Working with children, adolescents and young adults with a disability and their families

Family-centred, person-centred practice

A guide for everyday practice and organisational change

Published by Disability Services Division Victorian Government Department of Human Services ! "onsdale Street #elbourne Victoria Australia $une %!&% ' (opyright State of Victoria, Department of Human Services and Department of )ducation and )arly (hildhood Development, %!&%* +his publication is copyright* ,o part may be reproduced by any process e-cept in accordance .ith the provisions of the Copyright Act 1968. /S0, 123-!-24&&-5 %%-4 6online version7 Authorised and published by the Victorian Government
! "onsdale Street, #elbourne 6!%&!%&%7

/f you .ould li8e to receive this publication in another format, please phone &4!! 445 24&, using the ,ational 9elay Service &4 45 22 if re:uired* +his document is available as a .ord file and a PDF file on the /nternet at ...*dhs*vic*gov*au

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

Ac8no.ledgements
+he Department of Human Services and the Department of )ducation and )arly (hildhood Development .ish to ac8no.ledge the contribution of colleagues from around Victoria .ho provided information and feedbac8 during the development of the family-centred practice guides suite* +his pro>ect aimed to be family centred in its approach? grateful than8s to all the families and people .ith a disability .ho shared their stories and ideas for the pro>ect .ith generosity, courage and candour* +he pro>ect team .ere; from 9ed +ree (onsulting, consultants, researchers and .riters Sarah #arlo.e, )li@abeth Aheeler and (ara 0rough? from the Association for (hildren .ith a Disability, pro>ect manager and (hief )-ecutive Bfficer )li@abeth #cGarry, pro>ect .or8er $anice (han and other A(D staff and members? and researchers and critical readers (armel "aragy from the 9#/+ School of Global Studies and her colleagues #ary (ollins and )n@a Santangelo*

Suggested citation: Department of Human Services and Department of )ducation and )arly (hildhood Development %!&&, amily!centred, person!centred" a guide for e#eryday practice and organisational change, State Government of Victoria, #elbourne*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

(ontents
Families and young people quoted..............................................................................................7 1 Introduction................................................................................................................................. 9
About this guide***************************************************************************************************************************************** 1 +he suite of resources******************************************************************************************************************************** 1 An evolving approach******************************************************************************************************************************* &! /snCt it >ust good practiceD************************************************************************************************************************* &! Policy conte-t******************************************************************************************************************************************* &! Pull out 0o- - Principles*************************************************************************************************************************** &&

2Foundations................................................................................................................................ 13
Eey messages****************************************************************************************************************************************** &4 Defining family-centred practice*************************************************************************************************************** &4 Fnderpinning beliefs and values************************************************************************************************************** &4 Pull out 0o- - Personal perspective; Alison and #ar8 *****************************************************************************&G Findings from the literature*********************************************************************************************************************** &G Aho is HfamilyCD**************************************************************************************************************************************** &5 Family and person centred*********************************************************************************************************************** &2 Aor8ing .ith children and adolescents********************************************************************************************** &2 Pull out 0o- - Personal perspective; Paula, David, Samuel and family****************************************************&3 Aor8ing .ith young adults****************************************************************************************************************** &3 Pull out 0o- - Personal perspective; (aitlin ********************************************************************************************* &1 Family-centred, culturally responsive services***************************************************************************************** &1 Aor8ing .ith Aboriginal families and communities***********************************************************************************%! "earning to support cultural respect, responsiveness and safety*******************************************************%& Aor8ing .ith culturally and linguistically diverse families*************************************************************************%% "earning to support cultural responsiveness**************************************************************************************%% Pull out 0o- - Personal Perspectives; a family support group******************************************************************%4

3 Family-centred practice model.................................................................................................25

A model for everyday practice****************************************************************************************************************** % )lement &; Practices that build relationships ******************************************************************************************* % )lement %; Practices that support choice and participation**********************************************************************%5 )lement 4; +echnical :uality******************************************************************************************************************** %5

4 ractices t!at "uild relations!ips: #alues$ attitudes and "elie%s..................................................................................................27

Eey messages****************************************************************************************************************************************** %2 "oo8ing .ithin ***************************************************************************************************************************************** %2 +he importance of values************************************************************************************************************************* %3 Pull out 0o- - Personal perspective; (athy, 9ichard, (ameron, Angela and ,atasha*****************************%1 Discrimination, safety and trust**************************************************************************************************************** %1 Sharing po.er****************************************************************************************************************************************** 4! Pull out 0o- - Personal perspective; Amy, (olin, )mily, Anthony and "isa**********************************************4&

5 ractices t!at "uild relations!ips: interpersonal "e!a#iours and s&ills.....................................................................................32

Eey messages****************************************************************************************************************************************** 4% (ommunication**************************************************************************************************************************************** 4% "istening********************************************************************************************************************************************* 4% ,on-verbal communication***************************************************************************************************************** 44 (ommunicating directly and respectfully .ith children and young people******************************************44 Pull out 0o- - Personal perspective; #elissa, 9oland, #ichelle, Stefan and +ad*************************************4G (ommunicating across language, educational and other barriers******************************************************4G Gathering information ****************************************************************************************************************************** 4 Supporting informed choice********************************************************************************************************************** 45 Bffering information**************************************************************************************************************************** 45 #eeting peopleCs learning needs and supporting online research******************************************************42 (onnecting families .ith other families*********************************************************************************************** 42

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

)motional responsiveness*********************************************************************************************************************** 43 Pull out 0o- - Personal perspective; Daniela, $oe, 0en and Allegra********************************************************41 Affirming the importance of family****************************************************************************************************** 41 (ommunicating about medical and developmental issues ****************************************************************41 0uilding trust*************************************************************************************************************************************** G! Ahen resources donCt meet peopleCs needs******************************************************************************************** G! Pull out 0o- - Personal perspective; /ngrid, Dan, $ustin, )lla, 9ose and "u8a*****************************************G& /ngrid .as, ho.ever, frustrated .ith the level of support provided by other .or8ers, and .ith the relevance of the supports the family .as offered* HHo. does a ne. parent 8no. .hat they need, regardless of .hether their child has a disabilityD IService providersJ canCt .ait for us to say, KAe need thisL M /n the end / said, K/Cm not getting .hat / .ant hereL, and it .as the social .or8er .ho said,*******G& Bngoing communication************************************************************************************************************************** G& /nformation about service levels and provision***********************************************************************************G& Eeeping families in the picture************************************************************************************************************ G% 9especting young peopleCs privacy**************************************************************************************************** G%

' ractices t!at support c!oice and participation: decision ma&ing and action....................43
Eey messages****************************************************************************************************************************************** G4 Self-determination, inclusion and choice************************************************************************************************** G4 Supporting choice************************************************************************************************************************************ GG As8 and offer******************************************************************************************************************************************** GG (ollaborative goal setting************************************************************************************************************************* G (hoice in the conte-t of limited resources************************************************************************************************ G5 (hildren and young peopleCs role in decision ma8ing******************************************************************************G5 Supporting children and young peopleCs input************************************************************************************G2 Pull out 0o- - Personal perspective; Anthea******************************************************************************************** G2 /tCs also important that carers stay out of Hfamily mattersC, Anthea says* HBne carer recently, .hen / used to say, KBh #umCs been annoying me for this reasonL, sheCd say, KNeah, /Cve seen your mum do blah blahL* /tCs li8e, / have a right to say that, and you can agree to a certain point, but donCt get your bac8 up, donCt get too involved* /tCs butting in, cos itCs not your family, itCs mine* And you need to respect that >ust cos you .or8 .ith us, and you .or8 .ithin my house, .e still deserve privacyC*******G3 Ahen family-centred and person-centred practices come into tension**********************************************G3 Supporting action ************************************************************************************************************************************ G1 +ailoring support for action***************************************************************************************************************** ! H9eleasingC peopleCs capacity to ta8e action*************************************************************************************** & Ahen families are dissatisfied .ith the serviceCs approach**************************************************************** & Pull out 0o- - Personal perspective; Ainnie ******************************************************************************************** % /f you are concerned about peopleCs choices******************************************************************************************* %

7 ractices t!at support c!oice and participation: %le(i"le$ responsi#e ser#ices and supports.................................................................................................................................. 54
Eey messages****************************************************************************************************************************************** G Fitting in .ith family life**************************************************************************************************************************** G Family schedules and routines*********************************************************************************************************** G (hildcare needs********************************************************************************************************************************** +ransport******************************************************************************************************************************************** Service hours ************************************************************************************************************************************* 5 (ommunication preferences*************************************************************************************************************** 5 Pull out 0o- - Personal perspective; Eate, Greg, $amie, #elanie and (allum***************************************** 5 Service levels************************************************************************************************************************************* 5 9educing the demands on families********************************************************************************************************** 5 Bffering support .ith administration*************************************************************************************************** 2 #a-imising continuity of care************************************************************************************************************** 2 Sharing information**************************************************************************************************************************** 2 Follo.ing up and paying attention to detail***************************************************************************************** 2 /mproving service integration************************************************************************************************************** 2 +ailoring services and supports**************************************************************************************************************** 2 Pull out 0o- - Personal perspective; Donna, 0en, (asey and family******************************************************* 3 +a8ing a lead from families***************************************************************************************************************** 3 (ommon areas of difference************************************************************************************************************** 3 /dentifying appropriate locations and services, supporting inclusion *************************************************5! Supporting parents and caregivers***************************************************************************************************** 5&

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

Supporting siblings***************************************************************************************************************************** 5% "in8ing people into community*********************************************************************************************************** 54 +ailoring supports to peopleCs capacity*********************************************************************************************** 5 9esponding to change***************************************************************************************************************************** 5 Pull out bo- - Personal perspective; Anita, Peter, #ichael, 9yan and (laire*******************************************55

) *ec!nical quality....................................................................................................................... '7

Eey messages****************************************************************************************************************************************** 52 Family-centred practices as core professional s8ills********************************************************************************52 Fsing family-centred tools and methodologies **************************************************************************************** 53 Aor8ing to.ards service integration******************************************************************************************************** 51 9eferring and using secondary consultation******************************************************************************************** 2! Pull out 0o- - Personal perspective; $an, Sean, "achlan and "ouise******************************************************2! Self-care and maintaining appropriate boundaries***********************************************************************************2&

9 Family-centred organisations..................................................................................................72
Eey messages****************************************************************************************************************************************** 2% +he barriers to change***************************************************************************************************************************** 24 A frame.or8 for action***************************************************************************************************************************** 24 Supporting staff to be family centred ******************************************************************************************************* 2G Professional development and orientation****************************************************************************************** 2G Supervision **************************************************************************************************************************************** 2G 9eflective practice, team-based approaches and using .ritten materials******************************************2 Service development************************************************************************************************************************** 2 #anagement practices ********************************************************************************************************************** 25 Systems, policies and procedures****************************************************************************************************** 25 Family participation in organisations ******************************************************************************************************* 25 A family-centred service system ************************************************************************************************************** 22 (reating more family-centred professions************************************************************************************************ 23 Family-centred organisations as learning organisations**************************************************************************23

1+ ,aintaining and impro#ing practice......................................................................................79

Eey messages****************************************************************************************************************************************** 21 #onitoring and see8ing feedbac8************************************************************************************************************* 3! 9eflective practice************************************************************************************************************************************ 3! Fsing this suite of guides************************************************************************************************************************* 3& ,e-t steps************************************************************************************************************************************************ 3&

-ndnotes....................................................................................................................................... )3

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

Families and young people :uoted

+han8 you to the families and young people .ith a disability .ho generously shared their stories and ideas for these guides* Here .e list those people to ac8no.ledge them, and to convey a sense of the diversity of those .ho too8 part* ,ames and identifying details have been changed to protect anonymity*

Alison, mother of #ar8 6.ho has a genetic syndrome resulting in a mild physical and intellectual disability7 Amina, a parent from a support group for families from a #iddle )astern community Amy and (olin, parents of )mily 6.ho has comple- medical needs7, her older brother, Anthony, and her younger sister, "isa Anita and Peter, parents of #ichael 6.ho has Do.n syndrome7, his younger brother, 9yan, and his sister, (laire Anthea, an advocate and a young person .ith a disability 0etty, a parent from a support group for families from a ,orth Asian community (aitlin, a young person .ith a disability (ass, mother of Abel 6.ho has autism spectrum disorder and epilepsy and is visually impaired7, his younger sister, $ulie, and younger brother, $ac8 6.ho has a learning delay7 (athy and 9ichard, parents of (ameron 6.ho has AspergerCs syndrome7, Angela 6.ho has an intellectual disability and issues .ith mobility, hearing and sight7 and ,atasha Daniela and $oe, parents of 0en 6.ho has autism spectrum disorder7 and his younger sister, Allegra Deborah and Saul, parents of 9uth 6.ho has Do.n syndrome7, and her siblings, Aaron, "eah and ,ate Donna, mother of (asey 6.ho had an intellectual disability and comple- medical needs and passed a.ay aged &!7 and her older brother, 0en Fatima, a parent from a support group for families from a #iddle )astern community /ngrid and Dan, parents of )lla 6.ho has Do.n syndrome7, her older brother, $ustin, younger sister, 9ose, and younger brother, "u8a $an and Sean, parents of "ouise 6.ho has a mild intellectual disability7 and her younger brother, "achlan $ulia, a parent from a support group for families from a ,orth Asian community Eate and Greg, parents of $amie 6.ho has a pervasive developmental disorder7 and his younger siblings, #elanie and (allum 6.ho both have AspergerCs syndrome7 "illy, a parent from a support group for families from a South-)ast Asian community #ay, a parent from a support group for families from a ,orth Asian community #elissa and 9oland, parents of #ichelle 6.ho has Do.n syndrome7 and her younger brothers, Stefan and +ad #iriam, a parent from a support group for families from a #iddle )astern community ,atasha, a parent from a support group for families from a #iddle )astern community

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

Paula and David, parents of Samuel 6.ho has an intellectual and physical disability7 and several other children Sue, mother of ,ic8y 6.ho had atypical 9ett syndrome and passed a.ay aged &17? Sue is also the principal of a special school

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

& /ntroduction
About this guide
+his guide aims to support people .ho .or8 .ith children, adolescents and young adults .ith a disability or developmental delay to .or8 in more family-centred .ays* /t is for educators, respite .or8ers, allied health practitioners, early childhood intervention professionals, case managers and the myriad other professionals involved in the lives of children and young people and their families* Family-centred approaches .ill already inform the .or8 of many readers in different .ays* +his guide see8s to stri8e a balance bet.een orienting less e-perienced professionals to the approach and supporting their more e-perienced colleagues to reflect on and improve this aspect of their .or8* A fundamental premise of the guide is that there is al.ays more that any professional can do to strengthen and deepen their family-centred practice* +his is bac8ed up by research demonstrating that a gap can arise bet.een ho. family-centred professionals thin8 their practice is and the e-perience of those they .or8 .ith?&,% and that even professionals dedicated to family-centred practices can find them difficult to sustain fully over time*4 "eading family-centred practice researcher (arl Dunst, dra.ing on feedbac8 from service users over many years, suggests that many professionals e-cel in .hat he calls the HrelationalC elements of family-centred practice but find it challenging to maintain its HparticipatoryC elements < those that support family choice and participation, and potentially impact on the nature of services themselves* G /n consultations for this guide, many families, young people and professionals described e-amples of e-cellent practice* #any also described instances .hen families or young people felt let do.n, frustrated or not respected, heard or understood* +hese stories highlight the need for professionals, organisations and the system as a .hole to be more family centred* #ost children, young people and families are involved .ith a constellation of services* /mproved communication, coordination and integration bet.een them ma8e it more li8ely that a familyCs needs, preferences and priorities .ill shape the supports they receive* +his guide dra.s on the literature, the practice .isdom of many s8illed Victorian professionals, and the vie.s and e-periences of diverse families and young people .ith a disability* +he stories and voices of families and young people .ith a disability and practice e-amples from professionals feature e-tensively throughout, providing evidence, inspiration and many concrete ideas for good practice* +he guide begins .ith a discussion of some foundational concepts related to family-centred practice, including .hat the literature says and .hat the approach offers to .or8ing .ith adolescents and adults .ith a disability* An outline then follo.s of the practice model on .hich the guide is based* +he follo.ing five chapters e-plore various aspects of the model and their implications for practice* +he guide ends .ith discussion about ho. organisations can be more family centred, and ho. reflective practice and regular feedbac8 from service users can contribute to maintaining and improving practice*

+he suite of resources

+his is the foundation document in a suite of seven family-centred practice guides* /t provides the conte-t, conceptual frame.or8 and evidence for the approach, e-plores issues relevant to translating theory into everyday practice and organisational change, and offers many practical suggestions* Five of the shorter guides provide more tips and ideas for practice in specific settings; amily!centred, child!focused support in the early childhood years" a guide for early childhood inter#ention ser#ice professionals amily!centred, person!centred planning" a guide for professionals in intake, planning and case management roles

All subse:uent references .ill be to Hpeople .ith a disabilityC only

for ease of reading*

1

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+

amily!centred, person!centred allied health" a guide for practitioners in pri#ate practice, schools and clinical settings amily!centred, person!centred support; a guide for disability support workers Working with students with a disability and their families ; a guide for school staff with student support roles.

+he si-th shorter guide is amily!centred, person!centred organisations" a guide for managers and go#ernance bodies to support whole!of!organisation approaches to family!centred practice * /t provides support for management and boards to implement .hole-of-organisation approaches to strengthening familycentred practice*

An evolving approach
+he origins of family-centred practice as a term are in early childhood intervention 6)(/7* 0ut family-centred practice as a philosophy arose from the consumer movement, .hich also drove the development of personcentred practice* As this )(/ service manager ac8no.ledged; Ae li8e to claim family-centred practice no., .ith the literature and the research* Ahat .e have to remember is that it .as consumer driven* /t .as parents refusing to put their children in institutions M that made the change* Although family-centred practice has informed .or8 in some sectors for years, it remains a .or8 in progress, both as a field of research and a .ay of .or8ing .ith children, young people and families* Good practice and better understanding of the more comple- and challenging aspects of family-centred practice .ill continue to gro. as individuals and organisations in every sector reflect on and ad>ust their .ays of .or8ing, see8 feedbac8 from service users, change and reflect again* Australian families and the demographics of service catchments are also changing, as is understanding of the disabilities that affect children, adolescents and adults* 9esponsiveness is vital to family-centred practice, and all of these shifts contribute to the ongoing evolution of family-centred practice in theory and application*

/snCt it >ust good practiceD

Family-centred practice is a crucial component of high-:uality services and supports because it enables professionals in this field to do their >obs more effectively* Some elements of family-centred practice are the fundamentals of good human services practice, including s8illed communication and offering supports that meet peopleCs needs* Bthers < especially those related to decision ma8ing < ta8e it beyond those fundamentals* Family-centred practice re:uires a shift in po.er and authority a.ay from the professional as He-pertC and 8ey decision-ma8er 6as in Hmedical modelC approaches7 and to.ards the person .ith a disability and their family* /n fact, additional e-pertise is re:uired to empo.er people .ith a disability and their families* Some professionals .onder .hat this shift in po.er and authority means for their s8ills, 8no.ledge and e-perience* Family-centred practice does not undermine these assets but helps professionals use them more effectively, in partnership .ith the people they .or8 .ith* )vidence sho.s that this can help services ma8e a greater, more lasting difference to the lives of children and young people and their families*

Policy conte-t
+he policy conte-t for family-centred practice differs some.hat bet.een sectors but, broadly, change is to.ards greater emphasis on; evidence-based and reflective practice? inclusion and participation? choice, self-determination and self-directed support? service integration? and partnership .ith families* /n general, thin8ing around family-centred practice is most developed .ithin )(/, .here it has informed a reorientation of services in the past decade to.ards community-based supports and greater partnership .ith parents and caregivers* +his is reflected in the $arly childhood inter#ention practitioner competencies developed for the Victorian Government by the )arly (hildhood /ntervention Association 6Victorian chapter7*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ &!

+hese competencies inform this and the )(/ guide* +he %ictorian early years learning and de#elopment framework 6V)"DF75 and its associated practice principles also inform the guides and provide a conte-t for early years educators and )(/ professionals* Services for children and young people .ith a disability over the age of si- 6that is, post-)(/7 have also undergone a significant paradigm shift, .ith moves to.ards self-directed support and individualised funding* +he &ational disability strategy highlights gro.ing Australian and international support for Hperson-centred and self-directedC supports2 that ma-imise choice*3 (hoice is a 8ey Victorian Government principle underpinning these guides 6see bo-7 and is supported by both family-centred and person-centred practice* Person-centred practice is a critical element of disability services, yet the reality is that many adults .ith a disability live .ith or rely on continuing support from family 6although .ho those people are might change7* As children gro. to adolescence and adulthood, professionals .or8ing .ith them need to dra. on both family-centred and person-centred approaches* "egislative and policy frame.or8s also support the related principle of inclusion*1 +his recognises that the choices available to people .ith a disability and their families .ill al.ays be limited unless government, service providers and the community .or8 together to address barriers that prevent their full inclusion and participation in every aspect of community life* For educators and allied health practitioners .or8ing in schools .ith older children and young adults, a number of policy documents, standards and resources 6listed in the relevant guides7 provide support and conte-t for family-centred approaches* /n general, family-centred practice in these settings reflects a shift .ithin schoolsC perception of students from being passive recipients to active participants in their education* /t also reflects the .idening of the familyCs role from ensuring their child gets through the school gate to active partnership in the childCs learning and development* +hese guides are also informed by the principles of the Victorian GovernmentCs Cultural and linguistic di#ersity strategy relating to e:uality, dignity and self-determination, valuing diversity and non-discrimination, as .ell as those in $nabling choice for Aboriginal people li#ing with disability , relating to improving access, promoting least intrusive early intervention, supporting participation, and building cultural competence through partnership .ith Aboriginal organisations and communities* Family-centred practice has the potential to unite 8ey aspects of all these policy directions and philosophical strands in a coherent model of practice and an adaptable set of values, s8ills, behaviours and 8no.ledge that can strengthen the .or8 of professionals in each sector addressed in these guides*

Pull out 0o- - Principles

(hildren and young people .ith a disability or developmental delay and their families are best placed to 8no. .hat mi- of services and supports are li8ely to meet their needs* Services should be based on the priorities of children and young people and their families, responding to the particular stage of the child or young personCs development* A child- and family-centred approach based on a partnership bet.een parents and professionals should ma-imise the choices and opportunities available to children and young people .ith a disability or developmental delay and their families* Services provided to children, adolescents and young adults .ith a disability or developmental delay and their families should be guided by the follo.ing principles;

+he best interests of children and young people are paramount* Services and supports protect and promote human rights, including the rights of the child and young person .ith a disability or developmental delay* Services and supports adopt a child- and family-centred approach that promotes choice and opportunity* Services and supports are accessible and coordinated to intervene early and adopt a life-cycle approach to the planning and provision of services* Services and supports are integrated to meet the holistic needs of children and young people .ith a disability or developmental delay and their families*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ &&

Services and supports promote social inclusion* Services and supports are accessible and appropriate for children and young people from diverse cultures and their families*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ &%

% Foundations
Eey messages
Family-centred practice is underpinned by 8ey values about children, young people and families, including that children and young people are agents in their o.n life, and that families have significant e-pertise in relation to their childrenCs lives, and have the right to see8 the best possible services and supports for them* Family-centred practices have been .idely adopted in Australia and else.here in the past decade* +here is no. strong evidence for the approach, including that it improves child behaviour and .ellbeing, family functioning, levels of social support available to families and family satisfaction .ith services, and that it contributes to these primarily by increasing parental self-efficacy* +he approach is also supported in school settings by evidence of the benefits of family<school partnerships for all students* Professionals need to combine family-centred and person-centred approaches, especially in .or8 .ith young people* +his means respecting their choices and supporting the relationships that are important to their longterm .ellbeing* /t also includes responding to family membersC concerns and 8no.ledge about their child and offering information that might add to their understanding of their childCs needs or options in the future* (ulturally responsive practice is deeply lin8ed .ith family-centred practice because culture profoundly shapes human development and family structures* /t as8s that professionals address discrimination and ensure that culture informs all aspects of service provision* Family-centred practice can help services improve their relevance to diverse communities in the catchment because family is central to the lives of people in Aboriginal and many culturally and linguistically diverse 6(A"D7 communities* +he basic approaches to culturally responsive practice .ith Aboriginal and (A"D families are similar, but the practices and 8ey issues are very different*

Defining family-centred practice

Family-centred practice is a set of values, s8ills, behaviours and 8no.ledge that recognises the centrality of families in the lives of children and young people* /t is grounded in respect for the uni:ueness of every person and family, and a commitment to partnering .ith families and communities to support children and young people .ith a delay or disability to learn, gro. and thrive* /t puts family life < and the strengths, needs and choices of people .ith a disability and their families < at the centre of service planning, development, implementation and evaluation* Family-centred practice is not an end it itself, rather it enables professionals to do .hat they do more effectively* /t is no less important because of that* )vidence sho.s that the .ay supports are provided has an impact on families, as .ell as the supports themselves* &! +he centrality of Hfamily lifeC is crucial* /t goes beyond the child or young person and their family* /t is them and everything that ma8es up their .orld; their relationships, resources and daily lives? their culture, community and language? their stresses, needs and tensions? their preferences, interests and priorities? and their goals, hopes and aspirations*

Fnderpinning beliefs and values

+he s8ills and behaviours that family-centred practice re:uires are underpinned by certain beliefs and values, including that children, adolescents and young adults .ith a disability; are agents in their o.n life, and have their o.n strengths and assets do best gro.ing up in family settings, in safety, and .ith stable relationships, consistent support and opportunities for continuing connections .ith their parents, broader family and culture into adulthood

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ &4

are entitled to the support and opportunities they need to achieve their full potential? to create connections, ma8e contributions and feel a sense of belonging to their family, community and culture? and to participate in the social, economic, cultural, political and spiritual life of society have the right, as adults, to ma8e and act on their o.n choices, or to contribute to decision ma8ing according to their capacity, and are entitled, as they gro. to.ards adulthood, to support that helps them develop the s8ills and confidence to do so*

Family-centred practice is also grounded in the belief that; human development is best understood as an interaction bet.een the person as an active individual and their environment < that is, all the interactions and relationships that ma8e up their .orld, && .hich for children and young people primarily means their family every family is uni:ue, .ith its o.n strengths and assets, and is made up of those people .ho consider themselves family, .hether or not they live together or are related by blood or marriage families have significant e-pertise in relation to their childrenCs lives? are central to providing an environment in .hich their children gro., learn and thrive? and are best placed to advocate for and support them families care deeply about their childrenCs development and .ellbeing, and .ith the right support, most .ho are struggling can successfully adapt to the changes that their childCs developmental delay, disability or medical issue brings to their lives, and provide a safe, caring and stimulating environment families have the right to see8 the best possible services and supports for their child, and to not be >udged for doing so*

Pull out 0o- - Personal perspective; Alison and #ar8

Ahen AlisonCs son, #ar8, .as diagnosed .ith a rare genetic condition 6resulting in intellectual and physical disability7, his doctor gave the family the Hte-tboo8C prognosis* H/t .as the very .orst e-ample of .hat can happen,C Alison says* HHe said #ar8 .ould never be independent, never be able to do things for himself*C +his contradicted AlisonCs o.n understanding of her sonCs potential* H/ loo8ed at my gorgeous, smiling boy and thought, Who is right here' / had to ma8e some decisions about ho. to deal .ith this*C Part of that meant coming to terms .ith #ar8Cs disability* H/ felt /Cd lost my child,C Alison says* H/ had to re-learn .ho he .as*C Finding a paediatrician .ho focused on .or8ing .ith the family made a huge difference; HHe listened* He responded appropriately* He follo.ed up* He .as gorgeous .ith #ar8, and celebrated his milestones*C +hroughout their >ourney Alison has particularly valued professionals .ho recognised .hen she needed them to Hstep up, but not ta8e overC* Bne .as #ar8Cs occupational therapist 6B+7 at school < a great communicator, .ho also became #ar8Cs advocate; HShe .ould see him every .ee8, and see .hat .as happening* / didnCt, because / .as at .or8*C +ogether the B+ and Alison encouraged #ar8Cs school to meet his needs, and .hen it didnCt happen, the B+ helped Alison e-plore other options* #ar8 recently returned from an overseas trip, moved into supported accommodation and got a part-time >ob, .hich he loves* HeCs He-cited about life,C Alison says* H+his is .hat / .ant for both my children < to .ant to live their life to the fullest*C

Findings from the literature

)vidence for the efficacy of various elements of family-centred practice is cited throughout the guides* 0elo. is a summary of .hat 8ey investigations into the approach have revealed* Family-centred approaches have been .idely adopted in .or8 .ith young children .ith a disability and their families in the past decade in Australia, ,e. Pealand, (anada, the Fnited States and Fnited Eingdom* &%,&4 Family-centred practices are also informing .or8 .ith older children and young people, especially in allied health and other health service provision, &G planning and disability support*& 0oth family-centred practice and

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inclusion are 8ey practices .ithin Victorian early childhood education settings, &5 .hile family<school partnership is increasingly informing approaches .ithin Australian schools* &2 /n recent years even stronger evidence has begun to emerge about the efficacy and effects of family-centred practice in various settings* A %!! Australian literature revie. found that family-centred practice produces Hpositive parent and family benefits beyond those produced by structural intervention factors 6such as the form and fre:uency of services provided7 and non-intervention factors 6such as employment, housing and health care7C*&3 /n %!!2 a synthesis of G2 studies investigating the effects of family-centred practices reported; increased family satisfaction .ith the helpfulness of services increased parental self-efficacy 6see page !7 increased levels of social support improved child behaviour and .ellbeing improved family functioning*&1

/n %!!3 another Australian literature revie. concluded that theoretical evidence for the approach is strong but that Hthe relationship bet.een the provision of family-centred services and the achievement of positive outcomes for children and their parents is comple- and is yet to be fully understoodC* %! Significant progress .as made to.ards this in %!&!, .ith a further synthesis of % studies concluding that; family-centred approaches had both direct and indirect effects on parent, family and child behaviour and functioning? indirect effects .ere the strongest? and these occurred through strengthened parental self-efficacy* +hat is, parental .ellbeing and belief in their abilities 6such as to problem-solve and get the resources their family needs7 influenced parent<child interactions, .hich in turn had a positive effect on child development* %& A %!&! revie. of the evidence for family-centred practice in early childhood education settings concluded that family-centred practice; promotes parental involvement in education, .hich is associated .ith improved learning outcomes promotes continuity of care and more secure attachments for children enables professionals to develop responsive learning programs that build on childrenCs prior learning e-periences*%%

9esearch in educational settings beyond the early years also supports greater partnership bet.een schools and families, suggesting these are achieved .hen; early childhood services and schools engage .ith all families families have a say in and can directly contribute to programs, such as e-tracurricular activities there is a shared understanding of the importance of academic and personal development bet.een families, early childhood services and schools*%4

Further research demonstrates significant impacts for students of all ages, including; better learning and development outcomes in the early years and at school increased engagement in learning and development smoother transition to and from school higher retention rates increased confidence, social s8ills, emotional resilience, communication s8ills, classroom behaviour and general .ellbeing reduction in the effects of disadvantage among children from lo. socioeconomic bac8grounds* %G

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Aho is HfamilyCD
Family-centred practice re:uires that services recognise the diversity of Australian families, and .ho family is to the child, adolescent or young adult .ith a disability* For young children, family is .hoever the adults closest to them 6usually, but not al.ays, their parents at birth7 say it is* /n adolescence, this can become more fluid, and by early adulthood, HfamilyC includes anyone a young person identifies as such, including perhaps a partner, trusted caregiver or close friend* Bften .ho .e e-pect family to be is not the reality* +here are people .ho become terribly important to the HmanagementC of disability that you .ouldnCt e-pect < a neighbour, or .hoever* Aithin an hour of my daughter dying at age &1, her ta-i driver .as at my door, distraught* HeCd 8no.n her for &% months, the .hole of her post-school time* He pic8ed her up every morning and delivered her home in the evening* Anybody else .ho .anted a boo8ing at that time could go >ump* Periodically the t.o of them .ould turn up late, and heCd announce that theyCd been for a chocolate or a mil8sha8eQ HeCd already told us heCd be .earing a suit at her %&st birthday* He self-nominated to be someone in my daughterCs life < but .ithout him and his fle-ibility, our family .ould have been in trouble* < Sue, mother of ,ic8y and principal of a special education school Definitions of family are deeply cultural* /n many (A"D families, grandparents or other relatives often provide primary care, .hile Aboriginal definitions of family can encompass a broad community of care beyond biological relationships, and can include a special role for grandparents and )lders, all of .hich has implications for .hom the professional .ill .or8 .ith; / can go into a home and teach a boy to sign* Bne .ee8 /Cll have his mother and his siblings learning too, but then the ne-t .ee8 /Cll have his grandmother and his aunts and uncles, and then another .ee8 /Cll have a ne. set of cousins* / have to start at the beginning each time* Nou need to be fle-ible to engage the .hole family* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8 +hese guides use HfamilyC to include siblings and all consistent non-professional caregivers in a child or young personCs life 6including foster carers7 < in fact, those people .ho regard themselves as family, regardless of .hether they are biologically related or living .ith the child or young person* Family-centred practice also re:uires that professionals understand the comple-, reciprocal relationships bet.een all members of a family* /t comes do.n to communication* Families need to communicate the needs of each individual, their >oys as a .hole family, and the involvement that each person has* Services need to .or8 .ith the family as a .hole to be effective* < (ass 6see family listing on page 27 +o me, my relationship .ith my sister is completely normal* Have / missed out on things in lifeD Probably, but / have gained much more than / have lost M / thin8 by matter of circumstances that Isiblings of people .ith a disabilityJ gro. up a little bit :uic8er* Ae see .hat life is truly about, and .e .itness and are part of the unfairness of the .orld M Bur early insight into .hat life is all about gives us a good understanding of .ho .e are* /t is early maturation* /t is unchosen responsibility* /t is compassion and it is caring* And it is something people do not e-pect of children, teenagers and even young adults* 0ut .rong it is not* /t is love*% < Adult .ho gre. up .ith a sister .ith a disability /n practice, .or8ing .ith the family usually means engaging mothers, .ho are most often the primary caregiver by choice or circumstance*%5 Net support for the .hole family is critical* Families deeply appreciate services that .or8 to engage .ith other family members; +hey had a playgroup on Saturdays so dads could come .ith the children < siblings as .ell M my younger 8ids still attend and love the siblings group* /tCs a great time to chill out .ith other 8ids .ho understand .hat they go through* +hereCs also a lot of family nights < you might have dinner there, and some sort of entertainment, li8e a puppet sho.* /tCs ama@ing ho. much the 8ids love going* #y 8ids have been as8ing me all term about it* So they get support, and / get support* < #elissa 6see family listing on page 27

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Family and person centred

Professionals need to combine family-centred and person-centred approaches, especially .ith older children, adolescents and young adults* Person-centred and self-directed approaches increasingly inform disability service provision .ithin Australia and internationally* %2 +he &ational disability strategy recognises that HIpJeople .ith disability have lived e-perience of disability and must play a central role in shaping and implementing policies, programs and services that affect themC, and provides direction for HIaJ sustainable disability support system .hich is person centred and self directed, ma-imising opportunities for independence and participation in the economic, social and cultural life of the communityC* %3

.or&ing /it! c!ildren and adolescents

As mentioned, the term Hfamily-centred practiceC originated in )(/, .hich .or8s .ith children from birth to siyears* /n that conte-t, it is largely about responding to a familyCs .ishes, e-cept .here they conflict .ith a childCs best interests* +he child is the reason for a serviceCs involvement, ho.ever, and remains at the centre of the professionalCs relationship .ith the family* +herefore the intersection of family- and person-centred approaches in an )(/ conte-t is best characterised as Hfamily centred, child focusedC* Net almost all children, as they mature, .ant an increasing say in decisions that affect them, a right recognised by the Fnited ,ations (onvention on the 9ights of the (hild.%1 Professionals can support even young childrenCs input into decisions by recognising and responding to indications of their preferences* (hildren and young people .ho are non-verbal communicate these in many .ays, including through sound, posture, e-pression, ga@e and the use of communication aides* #any parents and caregivers .or8 hard to support their childrenCs gro.ing independence, to ma-imise their decision-ma8ing capacity and to ensure their preferences, goals and ambitions inform services and supports* Anita 6see page 537 has used her son #ichaelCs supports in different .ays as he has matured, to give him choices, foster his independence and support him to achieve his goals* AntheaCs mother, after years of nurturing her daughterCs s8ills and confidence, H.or8s in tandemC .ith Anthea 6no. &17 to support her to direct her o.n services* Paula 6see page &337 says of her no. %%-year-old son; Samuel is totally reliant on other people, so .eCve done our best to support him to be as self-assertive as possible* He does have speech, and he loves to tell people about .hat his rights are* /f someone says, H,o,C heCll tell them, H/t is my right to do < C .hatever it might be* AeCre very proud of him* Bther families might be less 8een to prioritise their childCs input into decision ma8ing, perhaps due to their family or cultural values, because they are not optimistic about their child gaining the necessary s8ills, or if their vie.s differ significantly from their childCs* /n a .orld .here adults often ma8e the decisions, it can be difficult for any child or young person to have their choices heard and respected consistently* /t can be even harder for those .ith a disability; Generally the people .ho are in po.er are people .ithout disabilities M Bften itCs too easy for the person .ith a disability not to be listened to* Fsually itCs the parents .ho complain* +he young person is the least li8ely to be vocal but the most li8ely to be affected by the decisions that are made* So you need to ma8e a lot of effort to not ignore the person .ho has got the most at sta8e* < George +aleporos, Nouth Disability Advocacy Service (oordinator Professionals need to respect and respond to family membersC vie.s, concerns and 8no.ledge of their child* Net sometimes it .ill also be appropriate to offer information that might add to the familyCs understanding of their childCs needs or options, especially as the child gro.s to.ards adulthood, including perhaps addressing the familyCs fears about their childCs future* /t can often be valuable to offer families an opportunity to learn from others facing the same challenges* 0oth person-centred and family-centred approaches can deepen everyoneCs 8no.ledge of the person .ith a disability, and lead planning and other .or8 in une-pected and fruitful directions* As one mother said;

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/ thought / 8ne. my son so .ell until .e started planning .ith $ohn* +his changed our .hole .ay of thin8ing about .hat $ohn .as capable of doing no. and in his future* 4!

Pull out 0o- - Personal perspective; Paula, David, Samuel and family
Paula and David have an adult son, Samuel 6.ho has a physical and intellectual disability7, and several other children* HSamuel had a really dedicated team of therapists in both primary and secondary school,C Paula says* H+hey 8ne. it .ould be really important to train his ne. team of support .or8ers so that he .ould be assisted properly and, at the same time, encouraged to do .hat he could for himself*C +he family also appreciated the fle-ibility of SamuelCs therapists* H+hey .ouldnCt say, KNour ne-t appointment .ill be ML and loo8 in their diary* +hey .ould say, KAhat are you doingD Ahen and .here can .e see you that best suits youDL Ahen the 8ids .ere little .eCd have to be in four places at once* So theyCd fit in therapy .ith us* Br theyCd use their 8no.ledge and resources to find e:uipment for us to trial < .hich is really time consuming < and sometimes theyCd even deliver it to our doorstep*C As Samuel matured, Paula e-pected professionals to consult directly .ith him* H,ot the high-level negotiating,C she says, Hbut .hat he .ants to do, or .ho he .ants to mi- .ith* / modelled .hat / .ould e-pect M AeCve al.ays encouraged him to as8 :uestions* /t blo.s me a.ay ho. he ma8es people accountable* /f they have a conversation that doesnCt include him, heCll say, KAhatCs an /SPDL or KAhen are .e going to do thatDL*C Paula and David continue to advocate both for and .ith Samuel, supporting him to develop an Hincreasing capacity to challenge systems and people himselfC*

.or&ing /it! young adults

Fnless under guardianship order, from the age of &3 young people are entitled to ma8e their o.n decisions* All young people need support to develop the s8ills and confidence to ma8e good choices, or to contribute to decision ma8ing according to their capacity* For those .ith a disability, this should include the freedom to learn by trial and error, li8e any other young person* /n this conte-t, itCs important that professionals respect young peopleCs privacy and confidentiality, e-cept if a duty of care issue arises* #any young people 6especially if their disability is primarily physical7 can become completely independent in advocating for themselves* Bthers .ill al.ays re:uire some assistance to identify their needs and perhaps ma8e some types of decisions* Bver time, this might come from their family of origin, from others .ho become family to them, from advocates or from other services* Sometimes young people ma8e choices that clash .ith the preferences of family members* /t can be difficult to determine .hat family-centred practice means in this conte-t* +he reality is that a lot of young people .ith a disability rely on their family of origin into adulthood* For many, these are their most lasting and supportive relationships* As (aitlin says 6see bo- belo.7, service providers should strive for Ha balanceC; being mindful of everyoneCs needs, the age of the person, and ho. each decision impacts on everyone involved* Ahen such issues arise, they often relate to autonomy, independence, identity, ris8 ta8ing and se-uality* /ssues to do .ith se-uality might include a young person .anting to have se-, enter a relationship, move in .ith a partner or e-plore their se-uality, including .hether they are 6li8e 3*5 per cent of men and & *& per cent of .omen in Australia4&7 same-se- attracted* Professionals need to respect young adultsC choices and support the relationships that are vital to their longterm .ellbeing* +he latter includes ensuring good communication .ith family, coordinating .ith the young personCs Hnatural supportsC 6in their family of origin and beyond7 and understanding the role of family and community in the young personCs life* Family and community can be especially important to the identity of young people .hose culture puts strong emphasis on relationship and family* +hose .or8ing .ith young adults .ith a disability need to hear and value family membersC concerns and 8no.ledge of their child* /t is often important, too, that they find .ays respectfully to e-tend family membersC sense of .hat might be possible 6and even necessary7 for their child in the future* +his might include, for e-ample, information about services available to support independent living, 4% or assistance .ith transitioning from school-based to adult disability services* (reative, inclusive planning approaches, incorporating net.or8s of support beyond immediate family, can help* 44 Professionals also need to validate the ongoing role of family members, and ac8no.ledge that it isnCt al.ays easy to Hstep a.ayC;

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/t helps if the parents are confident that their young person is having good outcomes, and that the service system is responding to their needs* I0ut ifJ a service is failing them, theyCre not going to let go of control* /tCs their instinct to ma8e sure that their child is supported* +he system isnCt very good at letting parents step a.ay because thereCs so much dependence on unpaid, informal support M IandJ .hen theyCre providing a lot of the care needs, it doesnCt feel very natural to s.itch off* < George +aleporos, Nouth Disability Advocacy Service Person-centred and family-centred approaches can loo8 very different in practice, but philosophically they are both grounded in the right to self-determination and appropriate support* Ahat happens if they come into tension depends on many factors, including the young personCs age and capacity, the decision in :uestion and its impacts on everyone involved, and the professionalCs role and relationship .ith all parties*

Pull out 0o- - Personal perspective; (aitlin

(aitlin 6a young .oman .ith a disability7 is Hin t.o mindsC about family-centred approaches* HBn the one hand / can see itCs very important, that having one person .ith a disability can impact on the .hole family* 0ut / 8no. from personal e-perience that it can be detrimental, .hen my parentsC opinions .ere given more .eight than mine*C An e-ample for (aitlin is .hen her school and family pressured her to do Near &% over t.o years* She thought she could do it in one, and felt strongly about graduating .ith her friends* She stood her ground, .ith support from the school counsellor, and did Near &% the .ay she .anted* HNou hope that as you mature, IprofessionalsJ .ill listen to .hat you .ant more,C (aitlin says* H/ guess itCs about establishing a balance, and being mindful of the needs of each person .ithin the family* 0ut also considering ho. much the decision impacts on each person* +he Near &% decision impacted more on me than on my parents* After all, itCs my life*C H/tCs also about the personCs age* / .as &2 < more than old enough to start ma8ing my o.n decisions* #aybe if / had been younger it .ould have been more appropriate to listen to my parents* Although / also thin8 children al.ays have an opinion about ho. things should be* /tCs >ust that .hen youCre younger, you donCt ta8e all factors into consideration*C A complicating factor for (aitlin .as that her mother also had a mental illness, .hich (aitlin .as un.illing to disclose because she already felt Ha bit stigmatisedC at school because of her disability* Her motherCs mental health services should themselves have been more family centred, (aitlin says* H,o one follo.ed up .ith her 8ids and Ias8edJ .here .ere .e* /t .as up to me to find my o.n support services* / .as luc8y the school counsellor .as :uite supportive*C

Family-centred, culturally responsive services

+he Victorian community is very diverse* Victorians come from more than %!! nations and &%! faiths, spea8 more than %!! languages and dialects, and include more than 4!,!!! Aboriginal people representing more than 4! distinct communities* Almost a :uarter of Victorians .ere born overseas, 2G per cent from non)nglish-spea8ing countries? one in five spea8 a language other than )nglish at home* 4G (ulturally responsive practice is .hen professionals and organisations have the capacity to respond respectfully and s8ilfully to the needs of diverse communities* /t can be seen as part of a broader concept of cultural competence, described as a set of Hcongruent behaviours, attitudes and policies that come together in a system or agency or among professionalsC that enable effective .or8 in cross-cultural situations* 4 (ulturally responsive practice and family-centred practice are deeply lin8ed because culture profoundly shapes both human development and family structures, .hatever a familyCs cultural bac8ground* Fnderstanding and responding s8ilfully to this is crucial to; M loo8ing at the .hole child and not >ust the presenting problem, loo8ing at the .hole e-tended family and not >ust the parents, and loo8ing at the .hole community and not >ust the family M culture is a 8ey mediator bet.een people and their social environments* 45 #any of the behaviours, s8ills and values needed for culturally responsive and family-centred practice are similar, including development of respectful partnerships .ith families, promoting self-efficacy, understanding and respecting a familyCs values and priorities, and .or8ing s8ilfully to adapt services to each familyCs needs* Family-centred practice can help services improve their relevance to diverse families and communities in

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their catchment42 because of the centrality of 6often e-tended7 family to the lives and identity of people in Aboriginal communities and in many (A"D communities* +he principles and basic approaches to cultural responsiveness .ith Aboriginal and (A"D families are similar, but the practices and 8ey issues are very different* +his is in part due to cultural differences, but also because of Aboriginal communitiesC e-periences of colonisation, institutional racism and e-clusion* #any (A"D families also e-perience racism,43 and some have e-perienced colonisation* Net their origins < li8e those of all non-Aboriginal or +orres Strait /slander people in Australia < are in migration, .hereas Aboriginal and +orres Strait /slander people are the First Peoples of this land and custodians of the .orldCs oldest continuing cultures* Aor8ing respectfully .ith Aboriginal families re:uires professionals to engage .ith the strengths and survival of Aboriginal people and the adverse impact of colonisation; the loss of land, life, resources, po.er, language, culture, community and family* (ulturally responsive practice is therefore about addressing discrimination and supporting diversity by recognising culture, and ensuring it informs all aspects of service provision; from inta8e, assessment and planning to implementation, monitoring and evaluation*

Aor8ing .ith Aboriginal families and communities

Aboriginal people e-perience &*G times the rate of disability of the non-/ndigenous population nationally 41 but are under-represented in disability and )(/ services* G! Aboriginal people .ith a disability are generally cared for .ithin communities and families,G& but they and their families also need opportunities to access high:uality, culturally respectful services and supports* /ncreasing engagement .ith Aboriginal families and communities re:uires that professionals learn about familiesC cultural needs and address the ongoing impacts of colonisation* For e-ample, Aboriginal peopleCs e-periences of dispossession, removal of children and ongoing discrimination 6including from services7 G% contribute to their self-e-clusion from services, and shape dynamics bet.een professionals and families* Partnership is crucial to increasing engagement and building capacity* #ainstream agencies and professionals must actively engage .ith Aboriginal families and communities, and learn from and partner .ith Aboriginal community-controlled organisations 6A((Bs7* +his .ill enable them to; build trust and connections .ith the community and .ith families over time provide more accessible information to families about support options offer Aboriginal families the choice of receiving support from Aboriginal or mainstream services, or from both, .or8ing in partnership 6choice, self-direction and self-determination are important for all families, but have an added dimension for Aboriginal people given the historical conte-t7 build Aboriginal familiesC s8ills and 8no.ledge, and provide culturally respectful services and supports*

Partnership can include formal agreements and protocols bet.een services* For professionals it can include net.or8ing, secondary consultation, referral relationships, co-case management and pro>ect .or8; +here might be an Aboriginal .or8er .ho .or8s .ell .ith community? heCs respected so much that everybody goes to him, and not to other .or8ers* /f he can .or8 together .ith another .or8er, and teach them, mentor them, and sho. them ho. to communicate properly, if that is a respectful process, then the other .or8er .ill get that 8no.ledge, and peer support* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8 +he Victorian Aboriginal (hild (are AgencyCs 6VA((ACs7 Aboriginal cultural competence frameworkG4 offers helpful strategies for professionals and services to build productive and respectful partnerships .ith A((Bs, Aboriginal .or8ers and Aboriginal communities, .hile the Department of Human ServicesC $nabling choiceGG boo8let also provides guidance* A holistic approach and broader partnerships are also important because, for Aboriginal families, disability is often combined .ith the impacts of chronic disease and other stressors* /n %!!5, for e-ample, 45 per cent of Aboriginal parents nation.ide caring for a child .ith a disability aged under &% had a chronic disease

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ %!

themselves*G #any families have e-perience of contact .ith many different 8inds of services but not necessarily of receiving support that meets their needs* +his ma8es good communication bet.een services 6.ith a familyCs permission7 and ta8ing a case history before .or8ing .ith a family very important*

0earning to support cultural respect$ responsi#eness and sa%ety

For some Aboriginal communities, there is no cultural concept or generic term for disability* For many it is not separated from health or other social concepts*G5 Bne study found that in some Aboriginal cultures people .ere not referred to as having a disability < disabilities .ere only discussed in relation to the tas8s that they prevented a person from doing* Disability .as not seen as affecting a personCs place in the community 8inship system or, necessarily, all of their roles and responsibilities* G2 Having some understanding of the specific cultural concepts related to disability, illness and care might influence the language that professionals use .hen relating to families, including discussion about .hat role services might play* Family-centred practice .ith Aboriginal families re:uires professionals to have some understanding of a familyCs 8inship net.or8, and often to engage at the community level, recognising the culturally specific role of e-tended families, )lders, grandparents and other relatives .ith responsibilities for culture and care; (aring is a shared responsibility* /f your duty is to care for a child and you canCt because of other responsibilities < for e-ample, a duty to country, a duty to )lders < then you as8 members of the family to care for the child* So, if a professional is .or8ing .ith a family, they should not assume that a mother is the only primary carer for a child* 0ecause of the dynamics in the family, if sheCs given permission for her sister or her aunty to loo8 after that child, then the child is in their care < they can ma8e the decisions .hile the mother or father are not there* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8 Professionals also need to understand the importance of cultural safety to children and young peopleCs .ellbeing*G3 Supporting cultural safety might include ensuring children 6for e-ample, those at special school or living in care7 have ongoing opportunities for connection .ith culture and community and other children from their bac8ground* /t might be especially important to support the cultural needs of children and young people .hose specific medical needs or disability affect their access to 8no.ledge, culture, community or country, or .ho re:uire specific supports to enable them to receive 8no.ledge 6such as communication aides7, travel to country, or participate in community festivals and other events* (ultural safety is also something that concerns families .hen receiving services or considering approaching a service for assistance*G1 For services, creating the space for people to feel culturally safe means ma8ing Aboriginal families feel .elcome* For professionals, it includes; sho.ing cultural respect 6including learning the specific appropriate .ays to address and sho. respect to )lders and others .ithin a particular community7 being .illing to learn and challenge their o.n assumptions and values being committed to ensuring their practice is culturally responsive engaging in regular reflection on ho. po.er .or8s in their relationships .ith Aboriginal families*

9eflective practice and feedbac8 from families are crucial to achieving family-centred practice, and can also support the building of culturally respectful practice* +here are many tools available for this purpose* VA((A, for e-ample, describes ho. its cultural competence frame.or8 can be measured in relation to government standards for community organisations, ! and offers a cultural competence continuum & that can help professionals reflect on the e-tent of their o.n and their agencyCs cultural competence* Ahen services and professionals are culturally sensitive, responsive, reflective and respectful, this creates space for Aboriginal families < including prospective clients < to feel culturally safe and to Hbe themselvesC* % +his ma8es it more li8ely that they .ill be open .ith service providers, giving professionals a fuller picture of their needs, and ma8ing it more li8ely that .or8 .ill achieve its intended outcomes;

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Aor8ers need to have an understanding of 8inship, and of cultural safety* 0ut even if they donCt understand the familyCs 8inship and history, an understanding of cultural safety .ill allo. them to actually .or8 .ith people, and learn as they go* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8

Aor8ing .ith culturally and linguistically diverse families

Partnership is also vital to culturally responsive practice .ith (A"D families, and to building relevant professional and organisational capacity* 4 +he most important partnerships .ill al.ays be .ith the families that the professional is .or8ing .ith* Bther important strategies for building cultural responsiveness include secondary consultation, referral and co-case management .ith staff in specialist services 6including migrant resource centres and others .ith cross-cultural e-pertise and net.or8s7* Ahere available, these organisations also provide a 8ey service option for (A"D families; People are more li8ely to access supports in the company of others of a similar cultural bac8ground* Further, people .ith a disability from (A"D bac8grounds usually identify more readily .ith people from similar cultural bac8grounds than they do .ith people .ith a similar disability* G (ulturally responsive practices .ith (A"D families include; communicating through accredited interpreters .hen a family re:uests one or .hen effective communication is not possible .ithout one, and using language services s8ilfully 6including receiving training on .or8ing .ith interpreters7 offering information to people about their service options in an appropriate language and format because lac8 of information is a 8ey barrier for (A"D families 6consultation might be needed to determine .hat information, language and format is most appropriate, as many refugees and other migrants have e-perienced disrupted education and have lo. literacy in their first language7 .or8ing in partnership .ith ethno-specific and multicultural agencies to increase 8no.ledge, s8ills and capacity to reach and .or8 .ith (A"D families and communities learning about specific aspects of a familyCs culture, including their cultural beliefs and practices in relation to disability, family and .ho is responsible for caring for people .ith a disability, .hich influences .hether the professional might suggest respite or other forms of support, and .ho in a family the professional should communicate .ith learning about diverse understandings of human development, raising children and the 8no.ledge and s8ills appropriate to children of differing ages? for e-ample, 8no.ing that in some communities all children are routinely hand-fed until age five might influence the selection of milestones for assessing a childCs development, or the design, delivery and revie. of services and supports shaping services and supports to address relevant aspects of cultural difference < for e-ample; a communityCs religious practices might influence the timing of service delivery? attitudes to gender might influence the allocation of staff to a particular family? and attitudes to leisure might influence activities*

As .ith Aboriginal families, culturally responsive practice .ith (A"D families re:uires organisational capacity and commitment < the tools, policies, systems and training < to support good practice* +his includes assessment tools that as8 about familiesC language, cultural and religious needs* Professional development is also important, for e-ample, in .or8ing .ith language services and around specific issues relevant to .or8ing .ith disability in the organisationCs catchment* +he ,ational #edical and Health 9esearch (ouncilCs 6,#H9(Cs7 Cultural competency in health document describes the need for action on cultural competency at multiple levels; in family<.or8er interactions, in professions 6.ithin pre-service education or professional standards7, in organisations and in the service system as a .hole*

0earning to support cultural responsi#eness

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(ulturally responsive practice .ith (A"D families re:uires that professionals learn about familiesC culture and conte-t* +he latter can vary for many reasons, not least their migration e-perience* For e-ample, e-tended family plays a richly supportive role in many cultures but is unavailable to many refugees and other migrants; ,ormally in families Ifrom my cultureJ, e-tended family lives together* ,ot here* Ae have no family here* < 0etty, member of a support group for families from a ,orth Asian community +he differences in 6or lac8 of7 services in the various countries of origin can also ma8e it difficult for migrants to 8no. .hat support is available, and .here they might find it; /n Imy countryJ .e donCt have these 8inds of services at all so people are often not a.are that the services e-ist* Fnless they have a friend .ho says, HNou can go there, you can go hereC, they donCt get services* +hey need some 8ind of handboo8* /t is particularly hard .hen you donCt spea8 the language* < $ulia, member of a support group for families from a ,orth Asian community Ahen learning about the culture of a family from a different bac8ground from their o.n, it is important that professionals remember that all cultures 6including the dominant Anglo (eltic culture7 are comple- and evolving, and every individual and family have their o.n relationship to cultural norms, as this case manager 6also from a (A"D bac8ground7 describes; 0ased on my personal and professional e-perience, / have come across situations .here it is very difficult to involve family members in some cultures because of loss of face* +hey are very afraid of see8ing help from other agencies because they are afraid that other people might become a.are of their problems* 0ut there are also subcultures .ithin the same cultures* So that sensitivity and understanding, and insight into that particular cultural situation are critical* /t can be a challenging area for anyone* )ach family is different? each individual is different* Some cultural beliefs and practices can have negative impacts* +his applies as much to mainstream beliefs and practices as to those of minority communities* Some are positive and protective* Ahen attempting to understand ho. a cultural practice impacts on children, young people or families, professionals should be .ary of the subtle po.er of stereotypes* #any cultural beliefs and practices are comple- and sometimes not .ell understood by professionals* Secondary consultation can be invaluable, but the most relevant source of information about a familyCs culture .ill be family members themselves*

Pull out 0o- - Personal Perspectives; a family support group

(onsultations for these guides included group intervie.s .ith parents in support groups for several (A"D communities* #embers of a group from one South-)ast Asian community discussed ho. a professionalCs interpersonal :ualities and s8ills could ma8e a big difference* H/f on the first day you have a good .or8er .ho 8no.s the right :uestions to as8 and is friendly and .arm, it can open up the person,C one parent said* H/f there is no friendliness there, then it bloc8s everything* /f someone understands me / feel released* /f they listen .ith no understanding it ma8es me heavy* +he interpreter needs to be good too* /f the interpreter sho.s arrogance .e canCt open up*C A number of parents tal8ed about the impact of beliefs about and attitudes to disability in their community* H+raditionally, .e believe that a child has a disability because the family did something .rong in a previous life, .hich is .hy .e feel shame,C said one* Another related an e-perience in her place of .orship of her daughter being laughed at by children she .anted to play .ith* H/ felt so much pain* / felt very angry* +hey .ere >ust 8ids, but maybe in their family their parents didnCt teach them that some people are different* After this, / didnCt .ant to ta8e her out for a fe. .ee8s*C S8illed, open, respectful :uestioning can Hopen your heart,C one parent said* Another said that she had not told friends or colleagues about her daughter .ith a disability until the daughter .as seven* H/ 8ept it inside and / felt very heavy* / didnCt 8no. ho. to tal8, ho. to start to tal8, ho. to open the story* After the first time of telling my story / felt released* /t became easier each time* Ahen / canCt tal8, / feel li8e a bloc8 is in my heart*C +he group also discussed the importance of professionals recognising that not all children or families in their community are the same* H+hey have to listen to us,C one said* H0ecause not all of us .ant to follo. the same care*C /t .as also important that professionals recognise parentsC lac8 of 8no.ledge of the system* HAhen the case manager comes to tal8 .ith the families, they should e-plain to the parents more clearly about the funding and

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ho. it can be used,C one parent said* HFsually they donCt e-plain things unless / as8 :uestions* +he problem is, Imy communityJ donCt 8no. the right :uestions to as8*C

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4 Family-centred practice model

A model for everyday practice
A practice model can help professionals to better understand and implement family-centred practice by brea8ing do.n 8ey concepts* +hese guides use a model developed by American researchers (arl Dunst and (arol +rivette, 5 and also dra. strongly on the .or8 of Australian researcher +im #oore and others 2* +he model divides family-centred practice into three 8ey elements 6see Figure &7 < practices that build relationships, practices that support choice and participation, and technical :uality < and associated aspects* Figure 1: *!e t!ree elements o% %amily-centred practice

Adapted from Dunst and +rivette, %!!2

+he follo.ing chapters e-plore each of these in turn, discussing 8ey practice issues dra.n from the e-periences of families, young people and professionals* +hey include practice e-amples, tips and ideas* #any more practice tips are contained in the sector-specific guides, alongside good practice scenarios colour-coded to the practice model elements for easy reference*

)lement &; Practices that build relationships

+hese are professionalsC values, behaviours and s8ills that help build positive relationships, especially .ith children, young people and families* +he model brea8s these elements into t.o aspects; the professionalCs beliefs, values and attitudes? and the professionalCs interpersonal behaviours and s8ills* A number of relationships are important to family-centred practice .ith children, young people and families* +hese include relationships bet.een; children and young people and their families children, young people, families and the professionals and agencies that .or8 .ith them professionals and their colleagues and supervisors organisations .ithin and beyond each sector organisations and government*

+im #oore and others 3 point to commonalities in positive, effective relationships bet.een managers and staff, and bet.een professionals and families* 1 +herefore, organisations that support staff to .or8 in familycentred .ays also create a culture of mutual respect and collaboration for staff and service users* #oore also suggests a HcascadeC effect, .hereby the relationships bet.een organisations and government influence

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those bet.een organisations, .hich influence those .ithin organisations and so on* (onsultations for these guides particularly highlighted the need to improve relationships 6including communication, coordination and integration7 bet.een the professionals and organisations involved in supporting children, young people and families*

)lement %; Practices that support choice and participation

Victorian policy imperatives in relation to family and individual choice strongly underpin this element of family-centred practice* +he literature suggests that this is the most effective element of family-centred practice for improving outcomes for children and young people* 5! 9esearch also sho.s that .hile many professionals understand the importance of active listening, empathy and sensitivity, fe.er e-cel in practices that help children, young people and families ma8e meaningful choices or ta8e action on their on behalf* 5& +he first aspect of this element is about empo.ering children, young people and families to ma8e informed choices about services, set goals, e-plore .hich resources might help meet them and ta8e action to get them* +he second aspect is about ensuring children, young people and families ha#e options that meet their needs* /t re:uires professionals and organisations to thin8 creatively to help shape support and services to peopleCs needs and preferences, and to recognise and respond .hen these change*

)lement 4; +echnical :uality

Families rely on professionals to have the 8no.ledge and s8ills re:uired to deliver high-:uality services and supports* Aithin family-centred practice, technical :uality is about professionals applying their 8no.ledge and s8ills < their e-pertise < in .ays that impact positively on families, children and young people* Professionals and services need to see the 8no.ledge, s8ills and behaviours re:uired for good familycentred practice as critical areas of e-pertise in themselves* Professionals ac:uire and build e-pertise through their pre-service education 6including vocational courses in disability services, teaching, social .or8, physiotherapy, speech pathology, occupational therapy and psychology7, on-the->ob e-perience, supervision, reflective practice, net.or8ing, secondary consultation, reading and professional development*

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G Practices that build relationships; values, attitudes and beliefs

Eey messages
9esearch sho.s that positive relationships bet.een children, young people and families and their service providers are critical, and that these should be open, mutually respectful, trusting and collaborative, based on shared decision ma8ing and partnership* +hese relationships are deeply affected by the professionalCs o.n values and >udgements, including about those they .or8 .ith* Professionals should understand ho. their values affect their interactions, challenge any negative HstoriesC that can arise about those they .or8 .ith, and practise engaging .ith people on their o.n terms* Professionals can build trust and engagement by respecting familiesC choices and values 6including .hen they differ from the professionalsC7, addressing discrimination, and .or8ing to transform traditional Hpo.er overC dynamics of professionals and clients to relationships of collaboration and collective empo.erment*

Positive relationships are critical to providing services that support children, young people and families to adapt to the changes that disability bring to their lives* 5% Australian and international studies have identified the characteristics of such relationships; they are open, mutually respectful, trusting and collaborative, based on shared decision ma8ing and partnership*54 9elationships are t.o-.ay, shaped as much by the e-periences, behaviours and values of children, young people and families as by those of professionals* PeopleCs prior e-periences of services are critical* /f they are less than positive, or not family centred, it .ill ta8e time to build trust, optimism and a sense of partnership; Validating the parentsC past >ourney is very important < the grief and the chaos that theyCve had to deal .ith* /Cve had clients say to me, HNouCre case manager number eightC* /Cd open at a blan8 page of my noteboo8 to say, H+his is our ne. beginning* +his is .here .e start together*C 0ut first / .ould give them time .ith the boo8 closed, to tell me .hat case managers one to seven did .rong* < (ase manager

"oo8ing .ithin
Ae all bring our o.n values, attitudes and beliefs to every relationship and interaction .e have* Ae rarely state them aloud, but they underpin everything .e say and do* Professionals need to understand .hat this means for their relationships .ith the children, young people and families they .or8 .ith* Family-centred practice as8s professionals to demonstrate certain values, including that families hold significant e-pertise about their childrenCs needs and can successfully adapt to challenges in their lives* /t isnCt al.ays easy to hold onto and demonstrate these beliefs* 9esources are limited, support systems comple- and some families are dealing .ith multiple stressors, not all related to their childCs disability* Professionals need to respect families for .ho they are and engage .ith them as they are* Families highly value professionals they donCt feel >udged by; A good respite .or8er is one / never feel >udged by if / havenCt cleaned my house, or ironed my top* Sometimes they come in, and the house .ill be an absolute mess* +hey never >udge .hatCs going on* #aybe /Cve been up all night .ith )mily, they donCt 8no.* < Amy Families can feel >udged even if thatCs not the professionalCs intention < sometimes .ith serious conse:uences* +he response (athy 6see bo-7 first encountered on see8ing services for her family stopped

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her doing so again for years* Bther families have felt >udged by professionals .hen they .ere unable to live up to their unrealistic e-pectations; Bne therapist gave me this .onderful sensory program / .as supposed to do .ith #elanie every t.o hours* Ahen / tried to e-plain to her that that .as really hard, she had no concept* / felt a real sense of >udgement, that / .as a bad mother because / .asnCt .illing to give something a try* / did try for about t.o .ee8s, but it didnCt ma8e a difference, and it >ust about 8illed me* < Eate #any professionals strive not to be >udgemental* Net everyone ma8es >udgements sometimes < itCs part of being human* Ahat matters most is .hat happens ne-t; ho. a.are professionals are of their values and >udgements, ho. they challenge them, and ho. this affects their interactions* /t can help if professionals; become more a.are of their o.n assumptions and values, and ho. these affect their interactions reflect on situations that ma8e them uncomfortable, and see8 support to deal .ith them better through reading, supervision or reflective practice .ith colleagues challenge any negative HstoriesC that can arise about children, young people and families in a sometimes deficit-focused system value the 8no.ledge and e-perience of children, young people and families, ho.ever e-pressed practise engaging .ith people on their o.n terms*

+his does not mean that professionals should not act on concerns about a child or young personCs safety < this is a critical responsibility 6see page G7* ,or does it mean they cannot respectfully challenge parents or caregivers if they have strong concerns about the impact of their choices* A critical factor in parents and caregivers feeling accepted is that professionals accept and value their son or daughter .ith a disability 6see (athyCs story, page %17, and perhaps even offer additional insights about them; Ae come from a strengths base and seeing peopleCs gifts* Bne man said to me, H/tCs so ama@ing to meet people .ho value my son in .ays that .e do < .ho care for him, but .ho also see ho. ama@ing he is in other .ays that .e donCt because .eCre so full up .ith the day to dayC* < Service coordinator

+he importance of values

)very personCs deepest values are shaped by a multitude of factors, including their culture, ethnicity, race, ability, health status, history, socioeconomic status, location, language, beliefs, education, lifestyle, personality, life e-periences, politics, family ma8e-up, gender, se-ual orientation and spirituality* #ost of the time our values are invisible to us* +hey are .hat .e gre. up .ith? they shape our daily lives* Bften .e ta8e them for granted* Sometimes .e also ta8e for granted that our values and .ays of doing things are HnormalC* 0ut everyone has their o.n values and .ays of doing things* 0eing sensitive to a familyCs values means finding out ho. things .or8 in that family, from big-picture :uestions around their support needs, to many aspects of ho. parents and caregivers .ant their child to be cared for* )ven .hen families desperately need assistance, it can sometimes be too stressful to deal .ith professionals .ho donCt respect their values and needs; #ost people find it really hard having strangers in their home* Bne family reduced the support they .ere getting from another organisation because it .as too hard M I+heir staffJ had the s8ills, but culturally or values-.ise they .erenCt on the same page, and that .as really stressful* Sometimes, in the moment, itCs easier not having another person around* +he family might 8no. that in the long term theyCll be e-hausted, but today, itCs >ust too hard* < Service coordinator Professionals should be especially careful to ensure they understand and respond to the values of people from minority communities, such as Aboriginal, (A"D and same-se- parented families, and others .hose life e-perience might be very different from their o.n* 9esponding meaningfully to the values of families can

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sometimes challenge not only the professionalCs o.n values but also those inherent in the systems and processes they .or8 .ith; Aor8ing .ith Aboriginal clients is interesting because they have different values* / .rote a plan recently for an Aboriginal client* All they .anted .as things outside the guidelines* Nou could see that they >ust had different cultural values* +he Aboriginal community really values their mob hanging out and spending time together* < Facilitator +ools such as general guidelines are important, of course* 0ut fle-ibility is also 8ey to family-centred practice 6see chapter 27* +his includes ensuring that processes and practices are culturally informed*

Pull out 0o- - Personal perspective; (athy, 9ichard, (ameron, Angela and ,atasha
Several families reported having felt >udged for see8ing support for their child or family, sometimes .ith profound conse:uences* (athy and 9ichardCs middle child, Angela, has an intellectual disability and issues .ith mobility, hearing and sight* +heir oldest, (ameron, .as recently diagnosed .ith AspergerCs syndrome* Ahen the family first sought services for Angela, says (athy, Hthe message .as, KNes, youCre entitled to support, but no, .e canCt provide it because your needs arenCt as high as other familiesL* / .as e-tremely angry and hurt by that* NouCve got your o.n huge emotional struggles, and that >ust compounded it enormously for me* / pulled my head bac8 in and didnCt as8 for anything for a fe. years*C )ventually a professional encouraged them to try again, and the family gained case management and other supports* AngelaCs after-school program has been a particularly positive e-perience* H+he coordinator is lovely,C (athy says* HShe said, K/ hope you donCt mind me saying this, but / >ust love AngelaL* /t .as really beautiful* / said, K/ donCt mind* / thin8 / prefer itL* She gave me little insights into Angela ItooJ* / could see she had a really good, intuitive understanding of her as a little human being, and that .as precious to me*C As .ith the familyCs initial e-periences, the message from (ameronCs high school has been, HNouCre as8ing too much,C (athy says* Ho.ever, this time, sheCs had great support to advocate for her sonCs needs from (ameronCs speech therapist* +he familyCs case manager has also helped by liaising .ith the year level coordinator, Hproviding strategies, and visiting (ameron, to see ho. he learns and to help him, in con>unction .ith strategies the speech therapist has given usC*

Discrimination, safety and trust

#any families need to feel some level of trust to openly e-press their needs and values to professionals* /n .or8 .ith Aboriginal and (A"D families, the concepts of cultural respect and safety 5G are critical* /f families do not feel culturally safe, they are less li8ely to be open .ith mainstream service providers about aspects of their lives they perceive as highlighting their differences from the Anglo (eltic mainstream* 5 According to a recent VicHealth report, the discrimination e-perienced by Aboriginal and (A"D communities 6including from services7 is rarely blatant* #ore often it ta8es the form of discomfort, underpinned by a belief in Hthe insurmountability of cultural differencesC, .hich sees some groups not as HinferiorC but different in .ays that threaten social cohesion*55 Professionals need to challenge such attitudes .ithin themselves and .hen they are e-pressed by others* Ahen they do so, and are open, responsive and non->udgemental about the many .ays that families differ, this counters peopleCs negative e-periences and helps to build a sense of safety and trust bet.een them and their service providers* Same-se- parents and lesbian, gay, bise-ual, transgender and interse- 6"G0+/7 individuals are also less li8ely to develop open, trusting relationships .ith health and other service providers .ho >udge or discriminate against them, or assume they are heterose-ual* /n one Australian study more than a :uarter of same-se- parents reported negative e-periences of their childrenCs health care related to their o.n se-ual orientation*52 Some researchers dra. a direct parallel bet.een Hcultural competenceC and the behaviours, 8no.ledge and s8ills needed to offer appropriate services to "G0+/ people* 53 )vidence sho.s that family-centred approaches are critical in supporting parents .ith an intellectual disability51 but that attitudes among service providers are too often characterised by disrespect, stereotypes and the presumption that they are incompetent parents* +his can transfer into systems and processes, even in specialist disability services* Bne Australian study found that although parental /R is a poor predictor of

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parenting competence,2! the classification Hintellectual disabilityC .as fre:uently used in assessments Hto imply a range of parenting deficits, including reduced capacity to learn appropriate parenting behavioursC* 2& As .ith other parents and caregivers, those .ith an intellectual 6or any other7 disability re:uire services and supports that meet their needs and preferences and enable them to ma8e meaningful choices for themselves and their children* Discriminatory attitudes to.ards parents .ith an intellectual disability are obstacles to family-centred practice, preventing professionals from Hobserving the familyCs strengths, from putting helpful supports in place, and from .or8ing to.ards promoting family connectionsC* 2%

Sharing po.er
Perhaps the most important value that family-centred practice re:uires practitioners to hold is that children, young people and families can 6and should be able to7 ma8e their o.n choices, direct their o.n supports and obtain the assistance they need to live the life they choose* Ahoever the professional is .or8ing .ith, enacting this re:uires insight into the po.er dynamics in the relationship and a commitment to partnership and sharing po.er* Family-centred practice researchers refer to the need to transform Hpo.er overC dynamics that characterise medical model approaches to Hpo.er .ithC relationships of collaboration, information and resource sharing*24 +his shift is happening in many sectors, .ith changes in approaches to funding, assessment, planning, delivery and revie. of services and supports* )ven simple service delivery changes can support the process, such as arranging appointments to fit .or8ing parentsC schedules* Professionals should be mindful of the po.er and authority they continue to hold by virtue of their status, e-pertise and access to information; )ven though .e donCt see ourselves as po.erful figures < it doesnCt matter ho. much .e aim at a partnership < .e are going in .ith e-pert 8no.ledge and are being paid as professionals* +hat does create an uneven relationship no matter .hat* /tCs about ho. you e-ercise that, .hether you see it as po.er or influence* < )(/ service manager #any professionals have the po.er to impact on a familyCs access to resources, .hether directly or indirectly 6for e-ample, by recognising a need and offering referral7* /ndividualised funding is changing this to an e-tent* ,evertheless, professionals need to be a.are of their po.er to recognise and respond to familiesC needs 6or not < see AmyCs story, page 4&7, including ho. they respond to peopleCs e-pressions of need; / said my son had all these needs and they said it is impossible to get funding for all these needs* / feel li8e a beggar as8ing for things* /t is embarrassing to beg* < Fatima, member of a support group for families from a #iddle )astern community Professionals also need to be conscious that some people find it more difficult than others 6for various reasons, cultural or other.ise7 to Hspea8 freelyC to people in authority* Ainnie 6a member of a support group for parents of a ,orth Asian community7 had a positive e-perience of planning for her childCs needs through student support group 6SSG7 meetings at primary school* 0ut at high school she found the meetings far too brief, and that the school had already set her childCs goals and .ritten her individual learning plan; +hey >ust say, HAre you happy .ith thisDC +hey say / can change it but / donCt feel comfortable* I/n my cultureJ people are often very reserved* +he relationship bet.een the parent and teacher needs to be good before you feel that you can comment* I/n my cultureJ .e need a good relationship before .e can spea8 freely* Perhaps / need to not be so gentle M not so polite* +he po.er dynamics in a professionalCs relationship .ith a child, young person or family are also affected by broader po.er structures and family stressors, including lac8 of access to information, education, financial resources and support net.or8s*2G Families on lo. incomes are li8ely to have less choice about .hich services they use* +hose .ithout informal supports can find it particularly difficult to access some services, for e-ample, if transport is difficult, or they cannot get childcare for the siblings of their child .ith a disability* Prior e-periences can also have a profound effect* #any Aboriginal families have negative e-periences of mainstream services and most have at least one member of the Stolen Generations in their close family* Some refugees or other migrants might have had very negative e-periences of authority in their countries of

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origin or on their >ourney to Australia, and might perceive government-funded services as more authoritarian than they intend to be* Fltimately, professionals need to move beyond Hpo.er .ithC dynamics, and .or8 to.ards .hat some researchers describe as Hpo.er throughC relationships, .hich promote Hcollective empo.erment, a process through .hich M all participants 6professionals and families7 increase their capacity and mastery over the resources needed to achieve mutually desired outcomesC, and .hich can also result in benefits for the .ider community*2 /n this process, says +im #oore; M po.er is no longer simply about controlling events and processes, but it is also about building the capacity of communities* All participants gain in competence, abilities, resource ac:uisition, and capabilities .ithout ta8ing po.er from others* +his results in increased satisfaction by all participants, parents and practitioners ali8e*25

Pull out 0o- - Personal perspective; Amy, (olin, )mily, Anthony and "isa
Amy and (olinCs middle child, )mily, has comple- medical needs and neurological issues, and their youngest, "isa, has a learning delay* +he family most appreciate services that recognise the .hole familyCs needs and donCt >udge or ma8e them Hbeg for helpC* HFor them to IrecogniseJ and >ustify a need ma8es such a difference,C Amy says* +his isnCt >ust about .hat support the family receives* /tCs also about ho. professionals respond to their needs* HA good case manager .ould say, K9ight, youCre having trouble getting )mily ready in the morning, do you thin8 it .ould be useful having someone helpDL,C Amy says* H9ather than me saying, KSheCs so heavy in the morning, do you thin8 it .ould be possible to have someone do an hour shiftDL and they say, KAell, / donCt 8no., .eCll see .hat .ould be possibleL* /tCs all in the .ay itCs delivered because the outcome probably isnCt any different*C Good .or8ers follo. the familyCs lead, Amy says, and then Hthey >ust blend in and get on .ith it, and help us all* Bur good respite .or8ers donCt >ust help .ith )mily* +hey interact .ell .ith Anthony and "isa* "isa begs to stay home .ith one of the .or8ers* She really loo8s for.ard to those times*C

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Practices that build relationships; interpersonal behaviours and s8ills

Eey messages
/nterpersonal :ualities and s8ills that support positive relationships include; listening .ell? being tuned into non-verbal signals? engaging respectfully .ith children and young people? communicating .ell across language, educational and other barriers? connecting families .ith other families? and s8ilful gathering of information, including by as8ing the right :uestions and empo.ering people to Htell their storyC if they .ish* Professionals need to be emotionally responsive to families, as appropriate to their role* +his includes e-pressing themselves .ith care, being sensitive to the stressors in peopleCs lives, affirming the importance of family in children and young peopleCs lives, building trust and referring appropriately* A critical issue is communicating medical and development issues to convey accurate information and a sense of hope* Strong interpersonal s8ills are needed to support people to ma8e informed choices by offering them information, addressing their concerns, helping them to ma8e sense of technical or conflicting information, and to .eigh the ris8s and benefits of different options* Professionals should not dismiss peopleCs online research, but rather offer high-:uality information, as8 people about their online researches, and offer to read and discuss any information they find that raises concerns for them* A 8ey challenge is .hen resources are inade:uate to meet peopleCs e-pressed needs* Professionals should recognise peopleCs needs 6even if they cannot all be met by specialist services7, ensure they understand them fully and .or8 .ith families to find other .ays to meet them if necessary, for e-ample, through a combination of informal, universal and specialist supports* 9egular communication is critical, including about the level of services available through specific funding, or remaining to the family in a given period* Families need to be 8ept informed of their childCs e-periences, progress and any issues that arise, especially if the family is not present .hen the professional is .ith the child or young person* Aith adolescents and young adults, this must be balanced .ith the young personCs right to privacy, e-cept .here a duty of care issue arises* Professionals must also inform families about any changes that might affect services* Professionals need strong interpersonal s8ills and behaviours to .or8 .ell .ith children, young people and families* Such s8ills are critical to building positive relationships, and are complemented by the personal strengths that tend to characterise professionals in this field, including empathy, .armth and sensitivity* Bne behaviour essential to family-centred practice is being available to families and young people* +his can be as simple as providing contact details 6especially if the family is usually not present .hen the professional sees their child7 or having an Hopen doorC policy, .hich #elissa 6see p*4&7 appreciated at her daughterCs 8indergarten and no. does at her mainstream school* Bther 8ey behaviours and s8ills include good communication, emotional responsiveness, supporting informed decision ma8ing, dra.ing out familiesC 8no.ledge, communicating sensitive information appropriately, responding appropriately .hen resources are inade:uate, engaging directly .ith children and young people and 8eeping people in the loop*

(ommunication
0istening
S8illed listening builds trust and is essential to enabling service providers to gather the information they need to plan effective supports .ith families* #any professionals are good listeners, and yet consultations for these guides revealed that too often families and young people still do not feel heard* Some families described professionals as sometimes too solution focused, and as less than sensitive to .here they .ere on their emotional >ourney;

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/tCs about being :uic8 to listen, and slo. to give advice until you really 8no. the family and understand M +he most positive interactions have been .here people ac8no.ledge the challenges but spea8 to me in an empo.ering .ay < ac8no.ledge and hear .hat /Cm saying, and try to .or8 .ith me* Sometimes people cut you off, donCt .ant to listen* /tCs also about understanding .here / am on the >ourney* At times /Cve been ready to hear things, and at times / need to tal8* +he people / connect .ith seem to understand those phases a little better* < Eate Professionals need to hear .hat a person says on that personCs terms, not as it relates to the professionalCs o.n life, role or ideas for Hfi-ing the problemC* Net the reality is that from time to time most professionals get distracted and stop listening .ell, for reasons ranging from tiredness to discomfort .ith some aspect of the situation* 9eflective practice might help professionals gain insight into .hen and .hy their listening s8ills falter 6see chapter &!7* +im #oore also refers to Hmindful practiceC, .here professionals cultivate greater selfa.areness and management of their o.n emotional responses in their interactions .ith families* 22

1on-#er"al communication
Professionals also need to be sensitive to .hat is not being said, .hich some Aboriginal people call Hdeep listeningC*23 For special education school principal Sue, her ability to do this .as strengthened by having had a daughter .ith a disability 6,ic8y had atypical 9ett syndrome and passed a.ay at &17; Sometimes itCs about hearing .hat isnCt said* Ae have a beautiful garden .ith a bench, and one mum .ith a severely autistic daughter sat do.n beside me and said, HDidnCt get much sleep last nightC* / said, HDonCt you >ust .ish they could sleep, even an hour at a time .ould ma8e such a differenceC* She >ust burst into tears and said, H#ost people thin8 that / mean / got up a fe. times in the nightC* 0ut of course her daughter hadnCt been to bed at all* For that mum, a bad night .as on a .hole other level* /f you havenCt had that e-perience, you can empathise, you can sympathise, but you canCt 8no. .hat itCs li8e* Sue also says that; Aith the best .ill in the .orld, .e often end up telling families .hat they should be doing* And families end up agreeing .ith us, to protect themselves* Families become very adept at HmanagingC professionals* +o avoid this itCs important that professionals tune into non-verbal cues, such as hesitation, pauses, tone and body language* ,on-verbal communication is largely unconscious but very significant in conveying underlying emotions or attitudes* 9emember also that non-verbal communication is not universal but has a diversity of cultural meanings* Professionals need to find out .hat cues to be a.are of .hen .or8ing .ith families .hose cultural bac8ground is different from their o.n* Professionals need to tune into non-verbal cues and to be a.are of .hat they themselves are signalling* 9esearch demonstrates that families often 8no. .hen a professionalCs attitude is not consistent .ith their .ords, for e-ample, .hen they e-press care they do not feel*21 /n such cases non-verbal cues are almost certainly the give-a.ay; Ae .or8 .ith families often in their most vulnerable time* Ae can un.ittingly have a huge influence by even a roll of the eyes* So .e have to be very careful* < )(/ service manager Professionals should be especially conscious of ho. their non-verbal communication conveys respect 6or other.ise7* Ahat this re:uires depends on cultural conte-t* For e-ample, grandparents and )lders in Aboriginal communities have particular authority and should be treated .ith deference* Sho.ing respect is also about 8no.ing .hat is appropriate to as8 during interactions .ith children, young people and families; +here .as one person .ho came as a replacement once, .ho started as8ing me :uestions about my disability, li8e .hat disability did / have and ho. did / ac:uire it* / didnCt really thin8 it .as appropriate to have to e-plain my medical history to someone .ho is >ust there to help me .ith my house.or8* < (aitlin

2ommunicating directly and respect%ully /it! c!ildren and young people

,on-verbal communication is particularly important in engaging children and young people* As8ing them .hat they thin8 sho.s respect for their opinion, but moving to their level, using appropriate communication

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methods and giving them time to respond, sho.s the depth of a professionalCs commitment to inclusion, and helps to build a relationship .ith young people and their family; Nou often .in the heart of a parent if you can engage .ith their child* / donCt go there consciously thin8ing that, itCs >ust something / do naturally* /Cll be on a home visit, sitting on the floor .ith 8ids cra.ling all over me* Sometimes /Cll do a visit .ith a young .or8er .ho doesnCt have children or young siblings or nieces or nephe.s* +hey .ill sit at the dining room table automatically* /f the carer is grandma, sheCll put coffee on the dining room table, so your cue is to sit there, but most of the time /Cll >ust sit on the floor .ith my bac8 against the couch* /Cll al.ays do it in front of young practitioners* Bn subse:uent visits .ith them /Cll find that theyCll do it too* < )(/ professional /n consultations for these guides, many parents and caregivers spo8e of ho. much they appreciated professionals .ho engaged directly and respectfully .ith their son or daughter .ith a disability; Bne of the assistants .as the most .onderful lady* She .as not only really bubbly and friendly to me, but she ac8no.ledged $amie, and tal8ed to him* At that point nobody really tal8ed to $amie or ac8no.ledged him .henever / too8 him any.here* +he fact / can remember it &G years do.n the trac8 < it made a huge impact* /t .as the sense of acceptance it gave to me that .as really significant* < Eate And of course, children and young people also appreciate such efforts; / li8e it .hen people arenCt patronising, and respect and tal8 to me li8e any other person* As a young person, sometimes your needs arenCt listened to as much, and parents can dictate .hat happens* / appreciate my opinions being heard and having as much say in the services / receive as possible* < (aitlin

Pull out 0o- - Personal perspective; #elissa, 9oland, #ichelle, Stefan and +ad
#elissa and 9oland tried out a number of educational environments for their daughter, #ichelle, .ho has Do.n syndrome* Her first 6mainstream7 8indergarten H.as not family centred,C #elissa says* H+he door opens at 1 oCcloc8, they loc8 the door, IthenJ you .ait till your child comes out*C +he Hopen doorC at #ichelleCs second 8indergarten .as much better, and #elissa felt Hincluded in everything that happenedC* +he disability service that ran it also ran a .ee8end playgroup, .here 9oland too8 #ichelle and her t.o brothers, and a siblings program that #ichelleCs brothers still en>oy* #ichelleCs first school .as safe for her in that she couldnCt HabscondC but gave no classroom support, #elissa says* H+o bring the teacher ne. strategies to help #ichelle .as a burden to her rather than a challenge M+here .as a table up the bac8 .here #ichelle could go if she didnCt .ant to do .or8C < a strategy the teacher persisted .ith despite #elissaCs protests* /t contributed, #elissa says, to #ichelle developing Ha lot of behaviour issuesC by yearCs end* +he schoolCs psychologist .as also reluctant to accept #elissaCs advice about her daughter 6see page 2&7, .hich led to an incorrect assessment of #ichelleCs /R that made her eligible only for a special development school 6SDS7, if the family shifted her from mainstream education* #elissa found the SDS similar to #ichelleCs first 8indergarten in that children .ere Hdropped at the gateC* Her concern that the SDS couldnCt meet #ichelleCs learning needs .as also >ustified* +he family had to move all three children to #ichelleCs current 6mainstream7 school, but itCs been the right choice* +he school is inclusive, .illing to support #ichelle and her brothers, and both the teachers and leadership are responsive if #elissa raises concerns*

2ommunicating across language$ educational and ot!er "arriers

Professionals should spea8 in plain language appropriate to peopleCs educational level 6.ithout patronising them7 and avoid >argon and technical terms* Ho.ever, they also need to help people gain the 8no.ledge they need to navigate the service system, including ho. to decode acronyms and technical language; / as8ed my case manager, H/n terms of money, .here does it come fromDC She said, HBh, you donCt need to .orry about thatC < but / was as8ing* She said, H/Cm trying to get you another /SP Iindividual service pac8ageJ for ne-t yearC* / didnCt even 8no. / already had oneQ So /Cm trying to use the right terminology to get that information* / still donCt feel li8e / have enough control* < (athy

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People .ith limited )nglish should be as8ed if they .ould prefer to communicate through a :ualified interpreter 6see chapter 17* /t isnCt al.ays practical to provide face-to-face interpreting in every encounter 6for e-ample, during every respite or attendant care session7, but service providers should offer an interpreter during assessment, planning and revie. sessions, and first visits by support .or8ers* +elephone interpreting is also a crucial support in emergencies or if information is needed 6by either party7 :uic8ly* Fsing a professional interpreter enables both parties to communicate much more comple- information, .ith greater accuracy, and ma8es it more li8ely that service users .ill feel confident to as8 :uestions* (ritically, using an interpreter enables professionals to get an accurate understanding of the situation, needs and choices of the person they are .or8ing .ith, ma8ing it more li8ely that supports .ill meet their needs* Professionals must al.ays use professional interpreters, never family or friends* +his helps ensure that; interpreting is accurate and of high :uality family members are not put under undue pressure or in inappropriate situations, and can concentrate on providing support for each other and information about their o.n and their childCs needs important principles of confidentiality and impartiality are not breached*

+hese all contribute to service :uality and also help protect the professionalCs organisation from legal ris8* Professionals need to reassure people about the rules of confidentiality for professional interpreters, and let them 8no. that they can as8 for a different interpreter if they donCt feel comfortable .ith the one provided* /t is good practice to record the name of a familyCs preferred interpreter and as8 for that person .hen boo8ing interpreting services for that family* Professionals should offer detailed, plain language information about their service 6and the service system generally7 to people .ho have no or limited e-perience of receiving services in Victoria 6for e-ample, because they are migrants or have been disenfranchised7* #any (A"D familiesC e-pectations are based on the service systems in their countries of origin* Professionals should as8 .hether it .ould be useful to e-plain ho. their service, profession or therapeutic modality .or8s, including its rationale and benefits*

Gathering information
As8ing the right :uestions, .hether open-ended or specific, helps professionals to elicit meaningful information* HAhat .ould you li8e to .or8 onDC can be daunting, especially early in a familyCs >ourney* Service providers can get parents and caregivers tal8ing in different .ays, for e-ample, by as8ing about an area of family life 6HHo. are you all sleepingDC or HAre any routines changingDC7, or respectfully observing their behaviour or mood* Some people find it easier to start .ith .hat hasnCt been .or8ing for them* Ae support families* Ae might have spent an hour .ith them, and then .eCll meet the case manager they have had for months, and /Cll thin8, HHo. can you not 8no. - and y about the familyDC /tCs about as8ing the right 8ind of :uestions* < Association for (hildren .ith a Disability family support .or8er Sometimes it is appropriate for a professional 6depending on their role and relationship .ith the family7 to move beyond :uestions that contribute to their understanding of a familyCs situation and needs, and to as8 challenging :uestions,3! especially if they are concerned about family membersC choices or feel there is additional information that the child, young person or family might benefit from* Professionals should be very a.are of ho. their o.n values and attitudes play out in such interactions* #any professionals e-perience a tension bet.een collecting the information designed to facilitate :uality service delivery 6such as that listed in inta8e forms or assessment templates7 and hearing the fullness and comple-ity of a familyCs story and needs* +he latter can ta8e much longer but can also build trust, and potentially vastly improve the :uality, relevance and appropriateness of services; A lot more comes out of that hour .ith the family than the Htic8 a bo-C* Nou need to do that, but you can often leave it until last, / thin8* < /nta8e .or8er Some families need the space to tell their .hole story, especially early on* 0eing as8ed the right :uestions can be very validating, especially if they address issues not previously recognised;

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/t is good .hen they as8 :uestions about the child but also about the family, .hen the :uestions openly address the issues a family might be facing* Ahen a .or8er as8s about the issues for the family it can open up your heart* < "illy, member of a support group for families from a South-)ast Asian community Bthers do not .ant to have to tell their stories or e-plain information repeatedly, in .hich case service providers can assist by sharing information 6.ith permission7* Professionals also need to see8 out tools and methodologies 6see chapter 17 < for e-ample, for assessment, planning or revie. < that help them dra. out the rich 8no.ledge that children, young people and families have of; each otherCs strengths, s8ills and needs? the familyCs and each memberCs dreams and goals? and ho. things .or8 in their family, including ho. family members .or8 around each otherCs needs*

Supporting informed choice

/nformed decision ma8ing re:uires families and young people to consider both their o.n needs and preferences and the relevant information, for .hich they often rely on professionals* #any people have limited information about supports and services, especially those .ho have limited )nglish or have recently arrived, have lo. literacy or are other.ise marginalised* ,atasha, a member of a support group for families from a #iddle )astern community says; Ae got some help but no one e-plained the basic things to me* Si- years later / found out / .as eligible for some (entrelin8 payments for all of those si- years* ,o one ever told me* Amina, another member of the group says; Aor8ers donCt tell you the basic things because they thin8 you already 8no.* 0ut .e donCt 8no.* Ahen / gave birth to my son, no one told me / .as able to get a disabled par8ing permit* For five years .e didnCt 8no. about this* Ae got many fines* Professionals should offer Aboriginal and (A"D families service options targeted to their cultural community, if any are available 6this might sometimes re:uire secondary consultation or other research7* /t is also important al.ays to offer them full information about mainstream services and supports*

3%%ering in%ormation
Some professionals see family-centred practice as simply Hdoing .hat families .antC, and are unsure if they can offer input* /f it is clear that a family or young person is una.are of information or ideas that might assist them, it is appropriate to as8 if, .hen and ho. they .ould li8e to hear about it* Depending on the conte-t, information might .ell be the familyCs most urgent need; / gave a presentation about self-care to a group for people still on the .aiting list* /t became evident very :uic8ly that unless those parents had information, and a fe. services sorted out, they .erenCt going to ta8e any time to loo8 after themselves* / .as the same* Bne of my 8ids had a brain tumour .hen they .ere little* / didnCt care about having a massage IbutJ / sure as hell .anted to 8no. ho. / got to the doctors, and about hospital .aiting lists* < )(/ professional Professionals need to offer information to people in a .ay that empo.ers them to ma8e their o.n decisions freely and in their o.n time* Any suggestions professionals offer should arise from a deep understanding of the familyCs needs, priorities and concerns, and be presented as possibilities and options* /t can be helpful to do the follo.ing; (hec8 .hat information the family and young person thin8 they might .ant, and .hen* /nformation overload is common* /f people donCt have a lot of information, it might be helpful to describe the 8inds of things you could tell them, and as8 .hich .ould be helpful* As8 families and young people about .hat they might already 8no.* +his helps the professional to; avoid patronising them? address any misconceptions or misinformation they might have? engage .ith any beliefs and values they might e-press? and use language they can relate to* (hec8 if the e-planation is clear enough, and .hether people .ant additional information*

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Fse plain language, avoid unnecessary >argon, and help people decode the terms and acronyms they need to navigate the system*

/t is also valuable to collect good-:uality, plain language information resources on important or common topics* Professionals might find these online, or develop them .ith input from service users* #any families 6not only from (A"D communities7 .ould also benefit from a plain language e-planation of the professionalCs o.n service and role, and ho. it fits into the service system* Bther useful information and supports to aid decision ma8ing include; accessible information about disabilities, developmental delays, health issues and the effectiveness of different approaches, including current research 6research summaries perhaps7 up-to-date information about services, supports, referral path.ays, inta8e criteria, funding and policies assistance to ma8e sense of conflicting information assistance .ith .eighing up the ris8s and benefits of different options and approaches* Sometimes families are loo8ing for an in-depth discussion of a professionalCs perspectives on an issue; IBne motherJ said sheCd been given :uite solid information from the early intervention service and case manager about the options* 0ut .hen she .anted to e-plore it in more depth, she got the message, H/tCs your decision, donCt as8 us to decide for youC* She said, H/ .asnCt as8ing you to decide for me, / .as as8ing for nuances, and perspectives on schoolsC performanceC* < Service manager

,eeting people4s learning needs and supporting online researc!

Professionals should as8 people ho. they prefer to receive information and tailor the information they offer 6as much as possible7 to peopleCs individual learning needs* Some people prefer .ritten resources such as information sheets, brochures and research papers* Sometimes these are available in languages other than )nglish* Professionals might sometimes be able to have resources translated, or offer to go through them .ith an interpreter present* #any people appreciate the opportunity to receive information via verbal e-planations, diagrams, role-plays, audio or video resources, discussion or problem solving* #any people appreciate online information and are li8ely to e-plore for themselves the .ealth of information available on the internet* +here are a lot of good-:uality, up-to-date resources online, but there is also a great deal of information that is not evidence based, and even misleading* Professionals should not be dismissive of peopleCs online research* ,e. information is al.ays being published online, some of it high :uality* Families .ill sometimes find credible information that professionals have not yet come across themselves* 9ather than dismissing information families find, it is helpful to; chec8 in .ith people regularly about .hat information they are encountering online if appropriate, offer to read online information that raises concerns for people and discuss it .ith them find and offer suggestions of appropriate, good-:uality and accessible .ebsites and do.nloadable resources 6such as information sheets7, evidence-based research papers and other online resources 6including support groups, moderated and other.ise7*

2onnecting %amilies /it! ot!er %amilies

Bne of the most effective .ays to help families become more informed is by connecting them .ith others .ho share their e-periences; Nou al.ays rely on other parents because theyCre at the coalface of .hatCs happening right no., .hereas the services arenCt al.ays up to date* /Cve been luc8y* Very early on / met someone .ith a similar son* / basically copied .hat she did in terms of early intervention and applications, and hoped* And it has .or8ed out .ell for us* < Daniela

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For people .ho are geographically isolated < or can only tap into community late at night .hen all other tas8s are done < online communities can be helpful* /t is important, ho.ever, to chec8 in regularly .ith families .ho use these sources of support, as Daniela cautions; / do access an online support group IbutJ itCs very confronting* +here are a lot of parents .ho are off the edge, .ith their frustration .ith schools in particular* Ahen my son .as three / got onto that .ebsite and read the stories in horror every day* So that probably .asnCt the best choice initially* /t can also be very valuable for professionals to share .hat they have learned from other families 6.hile respecting confidentiality7* Several families reported appreciating professionals giving them information about .hat might be ahead for them, and .hat choices might be possible in the future; Nears ago a speech therapist told us to boo8 into Ia private special schoolJ* At that stage itCs years in advance, you have no idea .hether thatCs an appropriate school, or a good fit for your child* 0ut she said that unless .e had her name do.n .eCd be unli8ely to have a chance of getting her in* And she .as right < bless her for telling us that* /t .as :uite confronting at that stage to thin8 maybe "ouise .ouldnCt be going to mainstream secondary school* +he therapist could have >ust ignored the issue, and not confronted me .ith it* 0ut she did, and she did the right thing* And because of that e-perience /Cve often as8ed professionals :uestions about the future* < $an

)motional responsiveness
(onsultations for these guides and the literature highlight some of the stressors that can affect families, including social isolation, financial pressures, the inaccessibility of services and facilities, discriminatory community attitudes, >uggling multiple service providers, inade:uate or poor-:uality services, e-haustion from care-giving .ith inade:uate support, particular stressors related to their childCs disability, 3& fears for their childCs health and concerns about ho. best to support their development* Ahen families e-press the strong emotions that arise as a result of such stressors, professionals need to listen* Sometimes they might also need to refer the family to other supports and services* 0eing sensitive to peopleCs emotional needs also re:uires that professionals e-press themselves .ith care; Aor8ers need to be sensitive to all the emotions and processes parents are going through, particularly around decision ma8ing* Nou have children and imagine theyCll gro. up and loo8 after themselves, and then you have a child .ith a disability* / never imagined / .ould have to ma8e these choices* +hereCs no guideboo8 that tells me the right or .rong thing to do* So rather than saying, HNou should be doing respiteC, for e-ample, you might as8, HHave you thought about respiteDC or HAhat might be the benefits of respite for (aseyDC and HAhat might be the benefits for youDC < Donna /t also sometimes re:uires professionals to listen to familiesC frustrations 6for e-ample, about the lac8 of respect or family centredness of some professionals7 .ith compassion, and to respond appropriately; For a very long time families have tal8ed .ith our organisation about the sadness and frustration they feel .hen the 8no.ledge they have about our child and .hat .or8s for their family is not recognised by professionals* #ost families have many .or8ers constantly coming in and out of their lives* /f they are not treated respectfully by them, over time the disempo.erment they feel can be soul-destroying* < )li@abeth #cGarry, Association for (hildren .ith a Disability +he emotional >ourneys that families e-perience are diverse and far from linear, and their lives can be stressful and chaotic, depending on their childCs condition and the supports available* +he impacts can re:uire patience, empathy and understanding from the professionals .or8ing .ith them; / thought, .hen / .as a professional, that the grieving process .as circular* 0ut / found out .ith ,ic8y that itCs a @ig-@ag* +eachers can get very frustrated* Nou can have a great SSG, youCll ma8e plans, but t.o days later the parents come in and say something different* +hatCs the grieving process, itCs not as irrational as it .ould appear* Some days families .ill be able to tal8 about it, some days they .onCt* / found it could creep up and hit me on the bac8 of the head for no apparent reason* +hereCs a .hole lot of

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deep understanding that most people donCt have < but it impacts enormously on ho. .e interact .ith families* < Sue, principal of a special school and mother of ,ic8y

Pull out 0o- - Personal perspective; Daniela, $oe, 0en and Allegra
Ahen Daniela and $oeCs son, 0en, .as diagnosed .ith autism spectrum disorder, it ans.ered some :uestions* HNouCve got this feeling,C Daniela says* H"i8e KsomethingCs .rong, /Cm not coping* / donCt really li8e going to the @oo .ith my 8id, and /Cm not sure .hy* 0ut / donCt thin8 /Cll bother .hen everyone else is going today*L Nou become very limited socially*C Net the ne.s .as initially devastating, partly because of DanielaCs e-perience of her brotherCs autism, and because of the paediatricianCs predictions about 0enCs future* HHe made out 0en .ould end up in a sheltered .or8shop < this is at age three* / thought, (aybe he will, but he)s going to ha#e the opportunity to do better if possible*C 0enCs diagnosis pushed Daniela Hright out of IherJ comfort @one,C she says* H/ had to force myself to ta8e some ris8s M Iand toJ become his advocate* /f you donCt do it, no one else .ill*C Daniela thre. herself into engaging .ith early intervention and understanding the Hma@eC of services* She found other parents a great source of information and inspiration* Good communication from 0enCs 8indergarten .as critical, especially before he could tal8* HAithout it / .ould have been flying blind to his behaviour, ho. he .as developing socially* (ommunication lets me set up and plan the year < .hat needs to be done communication-.ise and support-.ise* Autism can be :uite isolating, until you 8no. .hat youCre dealing .ith* Nou can feel li8e you donCt fit in* (ommunication IalsoJ made our family feel really .elcome*C /n the past year 0en has coped admirably .ith a five-.ee8 trip to visit relatives in )urope, and recently finished a great first prep term at his local school*

5%%irming t!e importance o% %amily

Family-centred practice is about professionals recognising the centrality of families in the lives, care and identity of children and young people* /t can help to affirm the familyCs significance, verbally and in other .ays, to the child or young person, and to their family and community; I+he schoolJ 8ne. about .hat the family did and .hat (asey li8ed to do at home* (asey adored .atching her brother play bas8etball < they 8ne. about that and tal8ed .ith (asey about it at school* +hey 8ne. that my mother, her grandmother, .as also very important to (asey* Sometimes my husband .ould drop (asey off to school, and they included him < he .asnCt >ust (aseyCs dad .ho no one 8ne.* And they .ould as8 :uestions about the family, and they put together family boo8s, including I(aseyCs brotherJ 0en* < Donna #ichelle did a huge poster for school about her grandparents* /tCs right up in the classroom .ith the other 8idsC posters* +hereCs t.o other 8ids .ith ethnic bac8grounds, and they .ere saying, HAhen you go to your yayaCs house, does she ma8e you eat this and thatDC +he 8ids accept that as part of .ho #ichelle is* < #elissa +his can be very important during times of transition, especially those involving a change in the familyCs role or a shift in .ho cares for a child or young person, for e-ample, a familyCs first e-perience of in-home or residential respite, a young personCs move to independent or supported accommodation, or .hen a family relin:uishes care of their child, a painful process for everyone involved, as this case manager says; / .or8ed .ith a young man .ho re:uires full support, .ho canCt move by himself* +he family came to us for long-term accommodation* +he father didnCt have any acceptance of his son* +he mum provided care* Ae loo8ed for respite, but itCs difficult to find the level of care he re:uires* I/n the endJ .e found alternative accommodation* He .as happy to move there, and the family .as very happy* +he 8ey .as family inclusiveness, even though the young man 8ne. he .as not going bac8* Ae included his mum in visiting the accommodation .ith him, .hich sho.ed that she .as still caring for him*

2ommunicating a"out medical and de#elopmental issues

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For many professionals a 8ey part of being emotionally responsive is supporting families to balance optimism and realism about their childCs development*3%+his is particularly critical at diagnosis and early in a familyCs >ourney, as both Alison 6see page &G7 and Daniela 6see page 417 describe* +he negative messages that some parents and caregivers receive from service providers are no doubt .ell intentioned? ho.ever, many prefer professionals .ith a strengths-based approach* /n consultations for these guides, families said they .ant both accurate information and a sense of hope* /t might be helpful for professionals to; use .ords that have less certainty and finality 6such as HprobablyC and Hli8elyC7 consider the range of possibilities for the child or young person, and not base speculation on a H.orst caseC or te-tboo8 scenario describe the range of possibilities and the factors that might influence a child or young personCs outcomes and discuss ho. these might apply in this familyCs situation provide opportunities for the family to as8 :uestions later 6at a return appointment or by phone7*

6uilding trust
+rust is built over time* /t re:uires professionals to listen to and value .hat people say, and to provide information and supports that meet their needs* For many people, it also re:uires some personal connection 6.hile bearing appropriate boundaries in mind7* As in any long-term relationship, there are li8ely to be occasions .hen communication falters, or .hen professionals ma8e mista8es* Sometimes this does irreparable harm to the relationship, but a sincere apology can go a long .ay; / find that really empo.ering these days, to be able to stand up and admit .hen youCre .rong, no matter ho. big or small the mista8e is* +hatCs really empo.ering and gratifying, and it builds trust for people to 8no. that .hen you mess up youCre going to ta8e responsibility* < Disability support .or8er Bne critical issue for parents and caregivers is that their children are safe and .ell supported .hen in the care of service providers* +his re:uires that professionals 8eep families informed 6see belo.7, and respond appropriately .hen they raise concerns*

Ahen resources donCt meet peopleCs needs

Bne of the challenges of family-centred practice is the tension that can arise from as8ing people .hat they .ant and then not having the resources to meet the needs they e-press* Some researchers have found that this can be an obstacle to practice change*34 FamiliesC e-periences of this include professionals avoiding families 6not ans.ering their calls7 or telling them there are others .ith more urgent needs 6see (athyCs story, page %17* /ngrid 6see page G&7 received an even balder response; At one stage .e .anted help to pay for )llaCs childcare* / felt it .as vital to her development to interact .ith typically developing children M /n front of a room full of other people / had a .or8er tell me / .as being greedy *** in the end .e actually got the funding because Ithe other serviceJ decided .e needed it* Families and young people understand that resources are limited and that guidelines and priorities for funding are necessary* Ho.ever, they have the right to see8 the best possible services and supports for their children or themselves* +hey should never be made to feel guilty for doing so or that they need to be in HcrisisC to receive assistance* Appropriate responses to this issue are partly about ac8no.ledging peopleCs needs; Bne case manager .as particularly good* She didnCt get us more IfundingJ than the others, but she .ould identify .hat .ould .or8 for us then see if she could get it* /f she couldnCt, .ell so be it* +hey donCt have endless amounts of money* Ahat you can have and .hat you need are probably very different things* #ost families understand that* 0ut some Icase managersJ .ould come in and almost HcontainC .hat you could say you needed* < Amy

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Appropriate responses are also about ho. professionals use their communication s8ills to gain a deeper understanding from families about a given need and its conte-t* Such e-plorations might reveal that the need can be met .ithin the available resources or guidelines* Ahen that is not the case, professionals need to .or8 collaboratively .ith families to help them find other .ays to meet the need, .hether through informal supports, different sources of funding or referral to another disability-specific or universal service* Professionals also need to ensure children, young people and families are offered all the financial and other support they are entitled to, and that they are informed about grievance and complaint mechanisms* /tCs also important to ensure people have an accurate understanding of the level and nature of support that a given service can provide or a funding pac8age can support* For a variety of reasons it sometimes becomes clear that a service is not able to meet a child, young person or familyCs needs* /n this case, professionals have an obligation to find other options and to offer support to help the family transition out of their service 6see /ngridCs story belo.7*

Pull out 0o- - Personal perspective; /ngrid, Dan, $ustin, )lla, 9ose and "u8a
/ngrid and Dan have had very mi-ed e-periences .ith supports for their daughter )lla 6.ho has Do.n syndrome7, even .ithin one service* "i8e many parents, /ngrid appreciated being connected .ith other parents* H/t .as ama@ing* / have the closest friends in the .orld from that initial support group,C she says* +he social .or8er .ho ran the group .as a great support to the family* HAe had a big drama .ith (entrelin8, nothing to do .ith )lla* +hey approved Austudy then too8 it a.ay* AeCd already moved Ito a house .ith higher rentJ* / rang up, hysterical, saying, KAhat am / going to doD /Cve got no money to pay the rentL* Straight a.ay Ithe social .or8erJ organised help to cover some of )llaCs childcare, she tal8ed me through it, .e got onto (entrelin8 and appealed*C /ngrid feels that this social .or8erCs life e-perience helped her to have a different level of empathy and responsiveness to her concerns* K/f you .ant to move on, letCs loo8 at other optionsL*C /ngrid .as, ho.ever, frustrated .ith the level of support provided by other .or8ers, and .ith the rele#ance of the supports the family was offered* HHo. does a ne. parent 8no. .hat they need, regardless of .hether their child has a disabilityD IService providersJ canCt .ait for us to say, KAe need thisL M /n the end / said, K/Cm not getting .hat / .ant hereL, and it .as the social .or8er .ho said,

Bngoing communication
In%ormation a"out ser#ice le#els and pro#ision
Bngoing communication .ith families and young people is a core responsibility of professionals and is part of the response to the issue of limited resources* Ahere support hours are limited 6.hether due to the serviceCs o.n funding or the level of a family or individualCs funding pac8age7, service providers must clearly e-plain the level and duration of support available at the outset, and 8eep families informed regularly about ho. much support remains to them in a given period* +his is essential to organisationsC accountability to service users and empo.ers families and young people to manage their supports 6for e-ample, saving respite hours to cover special occasions or school holidays7, or to see8 other options if service levels are unli8ely to meet their needs or ris8 creating other issues; +he funding Ifor a school-based speech therapistJ .ould only have covered a fe. appointments, so it .asnCt .orth doing because it .ould be more stress for my child to have to start .ith a ne. therapist and then change* < $an Bther issues that professionals should communicate about regularly include; ho. changes in circumstances 6such as the child or young personCs age, development stage or medical needs, or family income or employment status7 might affect the services available to them

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relevant changes in the professionalCs o.n role or availability 6including .hen they .ill be on leave and .ho .ill provide support during that time7, their organisation and sector, or in the services that the professional might be coordinating on the familyCs behalf ne. potential sources of support, including funding pac8ages, services and programs .hat the professional is learning or observing about the child or young person and their family, including their gro.ing capacity to meet their o.n needs* +his helps build self-efficacy 6see page )rror; 9eference source not found7 and calls for reflection rather than praise* Bbservation < .ithout positive or negative >udgement < is more li8ely to open up space for fruitful discussion* 3G

7eeping %amilies in t!e picture

Parents and caregivers rely on professionals to 8eep them informed about .hat happens for their son or daughter .hen they are not present, especially 6but not only7 if the child or young person is non-verbal* +his includes, for e-ample, telling parents and caregivers about children and young peopleCs e-periences, progress and any issues that arise at 8indergarten, school, in therapy or during in-home or residential respite* +ools for doing so include; communication boo8s? .ritten, email, message-te-t or verbal reports? regular meetings and informal Hchec8-insC 6at drop-off, pic8-up or other times7? service revie.s? special family events? an Hopen doorC policy? and invitations for family members to be present during appointments* Professionals must also respond openly and respectfully .hen family members raise fears or concerns* As discussed, families must feel able to trust the professionals caring for their children* During consultations for these guides, some families described some of their service providers as not being very forthcoming .ith information, and feeling un.elcome to access facilities .hen their children .ere there* Sometimes service providers might find it challenging to be upfront .ith families, but it is important that they be 8ept informed, for e-ample, if their child has had difficulties .ith another student at school, hasnCt eaten .hile in a serviceCs care, or has had disturbed sleep during respite* +his is about trust, but it also gives a family fore.arning of an issue that, if it continues, might mean the child or young person .ill need additional support, such as more assistance around social s8ills or attendant care overnight*

8especting young people4s pri#acy

Sometimes professionals must balance familiesC need to be informed .ith a young personCs right to privacy and confidentiality, especially in late adolescence and early adulthood* )ventually many young people .ill need the s8ills and confidence to direct their o.n supports and to form adult relationships, including .ith their support .or8ers* +hey need support to develop those s8ills, including from professionals* Ahen they reach &3, most 6unless they are under a guardianship order7 are legally entitled to ma8e their o.n decisions, and to have information about themselves 8ept confidential, including from family members, if they .ish* 9especting young peopleCs privacy also helps professionals build trust and positive relationships* #ost young people have the freedom to e-plore their identity, ma8e mista8es, have relationships and do HteenageC things* $ust because a young person needs assistance from a support .or8er to go out, for e-ample, does not mean they should not have the same freedom as their peers* +here are also times .hen most young people .ant to tal8 to someone .ho is not their parent or caregiver; /tCs good to be able to tal8 to a carer about anything, .ithin reason* /f /Cve had an issue .ith depression, and for some reason / canCt tal8 to my family, / tal8 to my carer* Some of them are good at understanding that they have to 8eep that private bet.een us, and some not so good* /f youCre going to put your trust in someone and tell them something private, they need to 8eep it private unless itCs an e-treme matter, in .hich case they need to tell my mum* < Anthea Ahat information is confidential and private and .hat may be shared .ith family members depends very much on the young personCs age and capacity* +he conte-t, including the professionalCs role and relationship .ith the child or young person and family, is also important* Professionals need to be clear about their legal and ethical responsibilities and see8 support from their manager if an issue they are unsure about arises*

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5 Practices that support choice and participation; decision ma8ing and action
Eey messages
9esearch sho.s that the family-centred practices that ma8e most difference to children, young people and families are those that support them to ma8e decisions and ta8e action for themselves* Professionals must collaborate .ith children, young people and families to determine their goals for services and supports* +hey often need to e-plain .hat they can offer before a family can name their needs but should be a.are of their po.er to shape e-pectations, especially early on* Family goals might include the childCs inclusion in a family activity, .hich can be Hbro8en do.nC into a series of short-term goals* Professionals can support peopleCs self-efficacy 6Hthe belief in oneCs capabilities to organise and e-ecute the courses of action re:uired to manage prospective situationsC3 7 by encouraging them to .or8 to.ards small achievable goals, putting them in touch .ith other families, being emotionally responsive, and helping people reflect on their e-periences of ta8ing action* Professionals need to understand that families have a different capacity to act at different times, e-plain the rationale for familiesC active involvement, and tailor their support for action to familiesC needs and capacity* #ost importantly, people are more li8ely to ma8e decisions and ta8e action if services respond positively .hen they do so? if not, they are less li8ely to ta8e action in future* (hildren 6even infants7 and young people can have input into decision ma8ing? professionals need to support this, and dra. on familiesC 8no.ledge of their children to learn about them and their preferences, and to include them in discussion* Great sensitivity is needed if the choices of a child or young person conflict .ith the preferences of their family* Depending on role, a professional might be able to assist directly, or refer young people and families to specialist services to help resolve conflict* /f professionals are concerned about peopleCs choices, they need to consider a range of :uestions, including; their role and responsibility in the situation? the level of ris8 or possible harm to the child or young person? .hether they have offered ade:uate information to ensure the familyCs choice is informed? .hether the familyCs thin8ing might change .ith other support? .hether they are simply feeling challenged by values different from their o.n? and .hether their o.n opinion is sufficiently informed*

Self-determination, inclusion and choice

+his aspect of family-centred practice arises from a commitment to self-determination and the dignity of choice; the idea that people .ith a disability are entitled to ma8e decisions for themselves and their families, and to live the life they choose* +he principle of self-determination underpins self-directed support, increasingly the basis for all Victorian disability services* +his first aspect of supporting choice in the family-centred practice model 6see page % 7 means supporting people to ma8e decisions and ta8e action on their o.n and their childrenCs behalf* +he second 6see chapter 27 is about ensuring the choices available to people are meaningful and can meet their needs* /nclusion is vital because many people .ant the choice of accessing mainstream services* /ndeed, disabilityspecific services .ill only ever be part of the picture for any child, young person or family, complementing the role of informal supports 6family and community7, universal and other specialist services* Net there are barriers to inclusion in many areas* A big part of supporting decision ma8ing and action is partnering .ith children, young people and families to help brea8 do.n barriers, .herever they might be* 35 )veryone has the right to self-determination, but family-centred practice also re:uires that professionals recognise and address the factors that affect some peopleCs po.er to ma8e choices in their lives* +hese include homelessness, unemployment, educational disadvantage, poverty, isolation, lac8 of access to

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essential services, chronic and mental illness, family violence and discrimination < including discrimination based on gender, ability, race, religion, se-ual orientation, family structure or circumstances* Family-centred practice therefore re:uires an understanding of the social determinants of health, defined by the Aorld Health Brgani@ation as Hthe conditions in .hich people are born, gro., live, .or8 and age, including the health system I.hichJ are shaped by the distribution of money, po.er and resources M IandJ .hich are mostly responsible for health ine:uitiesC*32 Self-determination has a particular meaning to Aboriginal families and communities, as recognised in the Victorian Children, *outh and amilies Act +,,- and the .ringing them home report into the Stolen Generations* As VA((A says, these 8ey documents discuss self-determination as; M the principle grounding a right for /ndigenous people to e-ercise control over matters directly affecting their children, families and communities* +he /ndigenous perspective on self-determination provides for the development of control over these areas of social life through processes .hich may involve some form of autonomy or self-government*33 +his understanding of self-determination informs the principle that Aboriginal people should al.ays be offered the choice of receiving supports from A((Bs, and points to the role of partnership bet.een mainstream and Aboriginal organisations and communities in building the capacity of all to provide culturally competent, appropriate, high-:uality services and supports to Aboriginal children, young people and families*31

Supporting choice
+here are many choices to be made during familiesC engagements .ith services* Depending on the conte-t, this might relate to choosing; .hich program or activity they .ill participate in? .hich professional they .ill .or8 .ith? .hat supports .ill be offered, .hen and .here 6for e-ample, at home or in other settings7? and .hat role there might be for family members* Family- and person-centred approaches as8 professionals to ensure, as far as possible, that these decisions are in the hands of those most affected by their outcomes*

As8 and offer

Professionals need to as8 .hat support is .anted and e-plain .hat they can offer* /f they propose an approach or action .ithout first clarifying .hat is .anted, they might end up doing things that are irrelevant or a lo. priority for the person or family* Bn the other hand, most people find it hard to articulate their needs .ithout 8no.ing the possibilities* Some families e-pressed frustration .ith professionals .ho felt they .ere being family centred by not offering supports unless they .ere re:uested; I+he serviceJ ran an art therapy group and / .anted )lla to be part of it* / .aited for them to say, HHereCs the art therapy group, )llaCs going to be part of it, thatCs the ne-t stepC* 0ut / heard nothing* Ae had a meeting and / said, HAhatCs happening .ith the art therapyD /tCs brilliant < speech, therapy, everything in one class*C +hey said, HBh no, .e canCt offer it to you, you need to tell us itCs .hat you .antC* +hey canCt tell us .hat they offerD Nou run this group but you arenCt going to tell me because youCre .aiting for me to tell you that my child needs art therapy, and then youCll say, HBh, .e have a groupCD < /ngrid Families also find it very validating .hen professionals recognise their support needs .ithout them Hhaving to begC, as Amy says 6see page 4&7* Bnce a relationship is established, people might appreciate professionals .ho offer further supports out of a deep understanding of them and their conte-t; / .or8 .ith a family .ho al.ays has a massive pile of .ashing < it doesnCt get folded, they donHt have time, they >ust pull clothes from it* /f the parents are there, the 8ids can have mum and dad time, so /Cll offer a hand .ith something li8e that, thatCs not connected .ith the children* /tCs about building a good rapport, ta8ing initiative* < Disability support .or8er (ase management have been :uite proactive* As our family got bigger, they identified .e .ould need more support and changed us from one pac8age to another* +hey initiated that? / didnCt have to* /tCs about thin8ing ahead, and 8eeping on trac8 .ith us as a family, .hat family changes are* < Paula

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Professionals should prioritise discussion of the familyCs desired goals early on, but it might first be helpful for professionals to outline their general role, approach and programs 6including entry criteria, if applicable7 and the potential benefits of their approach or modality, perhaps giving some concrete e-amples of supports that others have found helpful* /n so doing, ho.ever, professionals should bear in mind their po.er to shape peopleCs e-pectations, especially early in their >ourney or .hen they enter a ne. service or sector*

(ollaborative goal setting

+.o critical issues in decision ma8ing relate to .ho sets the goals for supports and services, and .hat information informs those goals* /n some settings goals .ere once more li8ely to have been informed by normative assessments?1! a child .ith a given diagnosis .as e-pected to reach a certain milestone or learning outcome 6perhaps related to motor s8ills, language or social s8ills7 and the HinterventionC .ould be designed to help achieve this* /n recent years assessment practices have become more functionally based, 1& .hich suggests itCs more effective to start .ith .hat the child or young person and their family .ants* People might e-press their desired outcome as the child or young person gains or strengthens an ability < to sit up or move unaided, to be independent in toileting, to socialise .ith peers or to concentrate on an activity* (hildren, young people and families need to 8no. that their goals and needs matter most, regardless of .hat they thin8 the e-pectations of the service or organisation might be; / al.ays tell teachers to as8 families .hat is the most useful thing they can be doing .ith the student* Sometimes they are surprised about the ans.ers* / remember sitting in SSGs myself as a parent, hearing ho. the school had been .or8ing .ith my daughter on her .riting her name* / said, HAhy are you doing thatDC and the teacher said, HAell, most parents .ant itC* Aell, she might have been getting some useful fine motor s8ills from that, but .ith her disability, she >ust .asnCt li8ely to need to .rite her name that often, it >ust .asnCt the highest priority* Given that some children learn slo.ly, .eCd better ma8e sure that .eCre teaching them s8ills that are useful to them and their families* As .e al.ays say, thereCs no point in teaching a student to tie their shoelaces .hen the family has decided that velcro and slip-on shoes are a perfectly acceptable solution for them* < Sue, principal of a special education school Sometimes the familyCs priority is for the child or young person to be able to ta8e part in an activity that is important to the .hole family* +hrough discussion this can be translated into actions that ma8e sense to everyone, and so are more li8ely to be supported by activities outside the professional setting; / .or8ed .ith a young boy .ho had a traumatic brain in>ury *** +he family said, HAe .ant him to be riding his bi8e at the summer holidays, thatCs really importantC* 9ather than saying, H0ut .e need to get him out of bed firstC, the team helped the family brea8 do.n those goals* +hey needed a fair bit of facilitation, but by the end the family .as saying, HAell, he needs to sit on the bi8e, so letCs .or8 on sittingC* He did end up riding a bi8e in the school holidays* /t .as a modified bi8e, and mostly he .as on the bac8 of mum or dadCs bi8e* /t .asnCt :uite .hat the family had originally intended* 0ut rather than telling them that straighta.ay < because they .ere over.helmed and didnCt see ho. it .ould all fit together < over time the family came to see ho. it .ould develop, and .hat the ne-t step could be* < )(/ professional Some people might hesitate to name certain issues or hopes because they fear they are trivial or unrealistic, because their childCs diagnosis .as delivered .ithout giving much cause for hope 6see belo.7, or because e-perience has taught them that itCs unli8ely their needs .ill be met* Supporting people to plan, implement and revie. approaches that help achieve short-term, realistic goals .ill support progress to.ards outcomes that might at first seem unattainable, as in this e-ample from an )(/ professional; / .or8 .ith a family .hose little boy has a neurological disease* Bne doctor said to the mother, HEids .ith this condition donCt do very .ell, so donCt e-pect very much from your childC* +his poor mum, she .as very young, and she .as so do.n* Ahen / met her initially and .e set some goals, she said to me, HAhatCs the pointD /Cve been told heCll never do anything any.ay*C /t too8 a couple of visits to hash out .hat she .ould li8e help .ith*

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/ completed her revie. the other .ee8* )very goal on it .as tic8ed off* At the beginning / as8ed, HHo. do you thin8 your son is going, .hatCs been happening in the last si- monthsDC #um said, H,othing* HeCs not doing anything, nothing has changed*C / said, HAell, letCs have a loo8* /n gross motor s8ills, you said youCd li8e him to sit by himself*C HBh,C she said, HheCs doing thatC* And so on* She .as li8e a different person* She said, H"oo8 at .hat my child can doC* /t .as the revie.ing of the plans, being able to pull out even tiny, short-term achievable things*

(hoice in the conte-t of limited resources

Family-centred practice means that choices < as far as possible < are in the hands of those most affected by them* Net these .ill al.ays be limited by the availability of resources* Ahat does being family centred mean in this conte-tD Some families recounted e-periences .here they felt their ability to even e-press needs .as HconstrainedC by professionals focused on .hat .as li8ely to be funded 6see AmyCs story on page 4&7* /f someone e-presses a need that seems to go beyond the professionalCs role, the available resources, or relevant guidelines or criteria, professionals should not ma8e HnoC their first or final ans.er* Depending on their role, this might be an opportunity to e-plore .hat the re:uest means to the person or family, .hat difficulty it might help resolve and .hat benefit it might have for the person .ith a disability* +hese e-plorations might .ell reveal that the re:uest does fit the role, guidelines or service criteria* For e-ample, an issue that at first seems unrelated to the needs of the child .ith a disability might turn out to be very relevant .hen loo8ed at in terms of the needs of the .hole family; Ae .anted to get the car .indo.s tinted because $ac8 hates bright light* He gets very upset .hen light is in his eyes in the car* He eventually recovers* Ho.ever, it triggers Abel to scream, shout and 8ic8* +his becomes dangerous and distressing for all* Professionals have to loo8 at situations in the conte-t of the .hole family* < (ass /f a need still cannot be met .ith the available resources, families and young people appreciate professionals .ho ma8e the effort to e-plore other options, .hether by referring them to another disability service or .or8ing .ith them to find other .ays 6for e-ample, through other sources of funding, informal supports and universal services7 to meet the need; Ahen / started / fought li8e bla@es to get everything possible for every family* / still advocate for families, often* 0ut there are only so many resources for the region, so part of our >ob is to say HnoC sometimes* /Cve never heard a not good reason for someone .anting more resources than their pac8age si@e* NouCve got to ac8no.ledge the concern, or the difficult situation people are in* Nou give a .ider conte-t on .hy Ithe ans.er is noJ and suggest, H"etCs try other thingsC, say ma8ing an application to the "ions (lub or 9otary (lub* Nou do as much as you can do to find options, to get the >ob done* < Facilitator +his is also an issue of communication .ith families 6see page G&7*

(hildren and young peopleCs role in decision ma8ing

Professionals need to dra. on both family- and person-centred approaches in relation to issues of choice, and self-determination for young children, older children, adolescents and young adults .ith a disability and their families* Ahy and ho. professionals balance the t.o approaches 6especially if they come into tension7 goes to the heart of .hat family-centred practice offers in .or8ing .ith adolescents and young people in particular, and is e-plored in some depth in chapter %, HFoundationsC* As discussed, most children, as they mature, have an increasing interest in 6and right to7 autonomy in relation to their everyday life and future* #ost 6unless under guardianship order7 .ill be entitled to ma8e choices for themselves at age &3* "i8e all young people, those .ith a disability need support to develop the s8ills and confidence they need to ma8e good choices and advocate for themselves, .hich includes practice in communicating their preferences; /Cm trying to encourage #ichael to have a say, to help him understand that .hen heCs .ith a carer heCs not actually being Hcared forC* +he carer is there to support him to do .hat he needs to do, not the other

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.ay around* /tCs not something being done to him, and if he isnCt comfortable he needs to say so* All children are told .hat to do by adults, but as he becomes a young man, #ichael has to realise he has a say in these things* < Anita

Supporting c!ildren and young people4s input

#any parents and caregivers, li8e Anita, Paula 6page &337 and AntheaCs mother 6see belo.7, .or8 hard to ensure their childCs goals and ambitions inform their services and supports, and to help them develop the s8ills and confidence to advocate for themselves* +hey are often 8een to ensure their child is present during discussions, and .ill also model to professionals .hat they e-pect from them in terms of consultation .ith their son or daughter* Professionals need to be responsive .hen this happens; #ichael is &2, and on the .hole / find that service providers donCt tal8 to him* +hey tal8 to me, and / turn to him and say, HAhat do you thin8 about thatDC /Cve made a concerted effort as he has gro.n to give him more of a voice* +here .ere some issues at school, and / said, H/Cll go and tal8 to the teacher about itC* And then / said, HAell, you go and tal8 to the teacher about it, and /Cll go .ith youC* Ae made an appointment, and the principal came in and said, HAhat are the issues, AnitaDC and / turned around and said, HAhat are the issues, #ichaelDC So he told them in his o.n .ords* +he principal .as really good, and .e .or8ed through it all* < Anita /f children and young people are not already present and included in discussions about them 6such as planning sessions and SSG meetings7, professionals might suggest to families that they could be* Direct communication .ith children and young people is also critical* /f they are verbal or use communication devices, professionals should as8 them about their preferences* /f not, professionals should ascertain their preferences by getting to 8no. them < their personality, strengths, li8es, disli8es and uni:ue .ays of communicating < through sound, e-pression, eye direction, posture and gesture* Ahen people recognise and respond to indications of their preferences, even very young children can be supported to have input* Families are s8illed in understanding .hat their child thin8s, feels and .ants, and can help professionals to become more s8illed in this .ay too* As (athy says about her daughter Angela 6page %17; SheCs non-verbal, although she can ma8e her point 8no.n very, very clearly* /tCs ama@ing ho. much you learn through the art of communication .ith someone .hoCs non-verbal because itCs so much about .hat you loo8 at, .hat you do, and the emotion thatCs emitting* / .ould li8e more than anything to be able to say to Angela, HAhat .ould you li8eDC, and for her to be able to tell me* 0ut she canCt do that* )ven if it .as something / had to say no to, / .ould love it* /t fills me .ith conflict sometimes to be ma8ing decisions for her* 0ut / 8no. my child* Bften parents and caregivers need to spea8 HforC their non-verbal child* Professionals need to remember to ac8no.ledge the great care many parents and caregivers ta8e to distinguish bet.een .hat they understand their child to be .anting or needing, and their o.n .ishes for their child; Nes, / .as (aseyCs primary carer and yes, / felt li8e .e came as a pac8age deal* 0ut over time / learnt that / might .ant one thing for (asey, but .hat .ould (asey .antD Nes, family is core, but right at the centre of that is the child, .ho is actually the one .ho is the recipient of the service M (asey couldnCt spea8, so she couldnCt ans.er :uestions* 0ut even as8ing me, HAhat do you thin8 (asey .ill needDC rather than HAhat do you .ant for (aseyDC is different* < Donna

Pull out 0o- - Personal perspective; Anthea

Anthea 6a young .oman .ith a disability7 appreciates the continuity that comes from employing her disability support .or8ers herself, rather than using a service* H/ li8e it if / have a rapport .ith them,C she says* H/t ta8es the hassle out M IbecauseJ they get to 8no. you, and ho. to do your transfers, or give you a sho.er, or ta8e you to the loo* Nou donCt have to panic about teaching a ne. person ho. to do something every time*C As Anthea approached adulthood, she and her mother began to H.or8 more in tandemC in managing her supports; H/f /Cm having a problem .ith a carer /Cll try to address it* Some are more accepting of me as their boss* 0ut if they see me more as their friend, /Cve had to say to #um, K"oo8, /Cm not getting any.here, can you help me outDLC

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Anthea appreciates carers she can tal8 to Habout anything, .ithin reasonC, including matters she might not .ant to discuss .ith her family* She needs to trust that the .or8er .ill respect her privacy* /tCs also important that carers stay out of Hfamily mattersC, Anthea says* HBne carer recently, .hen / used to say, KBh #umCs been annoying me for this reasonL, sheCd say, KNeah, /Cve seen your mum do blah blahL* /tCs li8e, / have a right to say that, and you can agree to a certain point, but donCt get your bac8 up, donCt get too involved* /tCs butting in, cos itCs not your family, itCs mine* And you need to respect that >ust cos you .or8 .ith us, and you .or8 .ithin my house, .e still deserve privacyC*

.!en %amily-centred and person-centred practices come into tension

Bften the .ishes and needs of a child or young person and family members .ill be in accord and professionals .ill find it fairly straightfor.ard to combine family- and person-centred practices in their approach* Ho.ever, most young people, sooner or later, .ill ma8e a choice, ta8e an action or e-press a preference that conflicts .ith the preferences of their family of origin* +he main difference for those .ith a disability is their level of reliance on their familiesC continued support* Another difference, of course, is that 6depending on their ability7 young people might also rely on service providers to enact many of their choices* /t is important to respond respectfully to familiesC vie.s about ho. much say children and young people should have at different ages, perhaps depending on ability* +hese vie.s are often the e-pression of deeply held values, perhaps connected to a familyCs religion or culture* And yet, as they mature, young people do have the right to a say in decisions that affect them, even .hen their vie.s conflict .ith those of their parents and caregivers* As (aitlin 6page &17 says, HAfter all, itCs my lifeC* (aitlin also says that professionals should be mindful of everyoneCs needs, and ho. each decision impacts on everyone involved* Professionals must address such issues .ith great sensitivity* )ven .ith the best of intentions it is easy to say or convey something unintended, potentially undermining the familyCs trust in the professional, organisation or sector; / said to Ia young .oman / .as .or8ing .ithJ, H/s that .hat you thin8, or .hat your mum thin8sDC / said it in front of her family* /t .as a really damaging thing to say, and a big learning for me* +he family .as really, really hurt* / apologised, but they .ithdre. from the organisation, although other people I.ithin the agencyJ have remained connected .ith them and built bridges* / had made a mista8e, but they .erenCt prepared to give us a second chance* So that young .oman has no services no.* < Service coordinator +he reality of the service system is that the lives of many parents and caregivers .ill remain focused on their son or daughter .ith a disability long after they reach adulthood, and sometimes for the rest of their lives* +hese are deep, comple-, usually reciprocal caring relationships 6especially as caregivers themselves age7, .hich professionals must ac8no.ledge and support* Sometimes that .ill involve respectfully assisting parents and caregivers to see ne. possibilities and options for their son or daughter, especially as they gro. to adulthood* Sometimes it .ill also be about sho.ing them there are other people .ho care about their son or daughterCs best interests* Bne professional tells this story; Ae .or8ed .ith a young .oman .ho .anted her partner to move in .ith her* Her mother .as very concerned* She .asnCt saying, H,o, itCs not going to happenC, but she .as concerned* +he mother and the daughter .ere refusing to spea8 to each other* Ae .ere in a very difficult situation because .e .ere .anting to support the young .oman and her partner, and .e had potentially the capacity to do so* 0ut .e also recognised that the mother<daughter relationship .as very significant, and .e really .anted to try and maintain it* And although she couldnCt see it at the time, .e recognised that the relationship .as also important to this young .oman* IBur staff memberJ did an enormous amount of .or8 .ith the couple themselves to ensure that both individuals .ere .anting this, and that one .asnCt perhaps coercing the other* She also did a lot of .or8 .ith the mother about her concerns* +here .as a lot of e-ploring of .hat the concerns .ere, debun8ing some of the myths Iaround se-uality and people .ith a disabilityJ, a bit of education for everybody involved, and ta8ing the motherCs concerns to the daughter < from an independent perspective, rather

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than .ithin the mother<daughter relationship* /t didnCt happen overnight, but the eventual outcome has been that the couple are no. together, and the mother is much more comfortable* /n many cases it .onCt be appropriate for the professional to play this 8ind of mediation role; if this is not .anted by either party? if the professional does not have the necessary s8ills, or appropriate role or relationship? or if there is an actual or perceived conflict of interest* Ahat role a professional might play in helping resolve conflict should be determined case by case, through discussion in supervision and .ith the family and the young person themselves* Secondary consultation can also be very useful* +here are many services that can assist in various capacities 6depending on the situation and .ishes of those involved7, including family counsellors, mediators and advocates* A coordinator of one youth advocacy service says it is most often a parent, social .or8er or other adult .ho ma8es the first call; Ae .ill say, H+han8s for identifying thatC, but then itCs our >ob to develop the communication .ith the young person, to find out .hat they .ant* Ae do have contact .ith parents after that first call because they are often concerned and .ant to 8no. ho. itCs all going* 0ut .e remind them .e are not their advocates* Ae maintain privacy, and respect that young people donCt necessarily .ant their parents to 8no. everything about them* +his becomes very important* Ae have lots of cases .here .e have parents ringing up saying, H$ohnnyCs dad doesnCt .ant him to do this, can you please advocate for him to have his rights respectedC* +hen .e tal8 to the dad, and the dad says, H$ohnnyCs mum blah blah blahC* +hatCs :uite common, that .eCre dealing .ith parents in conflict* Ae canCt side .ith any of the parents* +hatCs not going to help* Ae need to .or8 out .hat the young person .ants, and try to get to the bottom of it* < George +aleporos, Nouth Disability Advocacy Service coordinator

Supporting action
+his aspect of family-centred practice goes beyond issues of choice* /t is also about children, young people and families ta8ing action; to investigate options, research for themselves, act on their choices, meet their o.n needs, advocate for themselves and obtain the supports and services they re:uire* 9ecent .ide-ranging research indicates that the main .ay that family-centred practice contributes to improved outcomes for children, young people and families is by strengthening their self-efficacy* 1% Selfefficacy is defined as Hthe belief in oneCs capabilities to organise and e-ecute the courses of action re:uired to manage prospective situationsC,14 .hich affects ho. a person thin8s, behaves and feels* 1G As this )(/ professional says; /tCs not one of the tangible goals that .e .rite on a plan, but one of our 8ey goals is to get a family from that point of being over.helmed < H/ donCt 8no. .hat to doC < to coming to you and saying, HAhat do you thin8 about thisDC / li8e it .hen a family has done research on a standing frame, a chair or .hatever, and says, HAhat do you thin8 about thisDC rather than, HBh, .hat should / doDC For me, thatCs the transition from them being over.helmed, and you needing to help them to get there, to them being empo.ered, .here they say, HHo. can .e, as a family, use you for .hat we .antDC People .ith a strong sense of self-efficacy regard challenging problems as tas8s to be accomplished* +hey tend to develop a deeper interest in and commitment to the activities they ta8e part in, and they recover :uic8ly from disappointments* People .ith a .ea8er sense of self-efficacy tend to avoid challenging tas8s, believe that difficult situations are beyond their capabilities, tend to focus on the negative, and :uic8ly lose confidence in the face of setbac8s*1 Albert 0andura, the psychologist and researcher .ho first described self-efficacy, lists four factors that affect peopleCs sense of self-efficacy that are useful pointers for family-centred practice; H#asteryC e-periences; performing a tas8 successfully strengthens peopleCs sense of self-efficacy* +herefore, encouraging families to do .or8 to.ards an achievable goal strengthens their confidence to do more*

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Social modelling; seeing that other people li8e themselves have completed a tas8 successfully is a po.erful motivator* Peer support is helpful for many families, as are stories 6for e-ample, in the servicesC communication materials7 about .hat other families have achieved* /n the same .ay, e-amples of good practice 6such as those in this guide7 are a .ay to support professionals to improve their o.n practice* Social modelling is also an important .ay that parents and caregivers sho. their children the importance of ta8ing an active role in meeting their o.n needs and advocating for themselves* Psychological responses; everyone has their o.n set of emotional responses to lifeCs challenges* Stress and an-iety, for e-ample, can affect a personCs self-efficacy in a difficult situation, but the 8ey factor is how people interpret their emotional responses* #ost people can learn ho. to manage their stress and so improve their sense of self-efficacy*15 Social persuasion; 0andura says that people can be verbally encouraged to believe they have the s8ills and capabilities to succeed? ho.ever, encouragement alone is not enough to strengthen self-efficacy, especially in the face of challenges* /ndeed, he says itCs easier to 6unintentionally7 undermine peopleCs self-belief, .ith the conse:uence of undermining self-efficacy*

8e%lection$ not praise Some researchers suggest that ob>ective reflection, rather than positive encouragement or HpraiseC, might be a more effective .ay to help support stronger self-efficacy* 12 Ho.ever .ell intentioned, praise can feel li8e a >udgement from Hon highC* Praise is also less li8ely to create space for the person to discuss their ambivalences or difficulties, or reflect on ho. they might do things differently ne-t time* Simply ac8no.ledging the efforts of a parent or caregiver, for e-ample, gives them the space to tal8 about .hat the effort has cost, any doubts they might have about the value of that particular effort, or any ambivalence about similar future efforts*

*ailoring support %or action

#ost parents and carers of children and young people .ith a disability feel they are their childrenCs best advocates < and that they have had to be* #any ta8e on this role .ith gusto 6see DanielaCs story, page 417, others less so* #ost professionals have e-periences of .or8ing .ith people .ho .ant them to ma8e the decisions, implement the therapy 6or educational strategy, case plan and so on7 and H>ust fi- itC* +his doesnCt mean these families care or 8no. less about .hat .ill .or8 for their child and family, nor does it mean they have less potential to ta8e a more active role* /t does mean they are less li8ely to articulate their 8no.ledge, and might re:uire far more support and encouragement to become informed, set goals, and ma8e decisions and act on them, for instance by partnering .ith professionals to implement supports 6say in relation to early intervention7 in Hnatural environmentsC such as the familyCs home* "i8e most people, parents and caregivers of children or young people .ith a disability .ill have varying capacity to act at different times* #ost parents and caregivers also >uggle paid .or8, the needs of siblings and other issues* #any find their capacity to ta8e an active role increases as they >ourney through the system and adapt to the changes brought about by their childCs disability; /n the beginning / felt that the case manager .as coming in and managing me* / .asnCt capable of doing anything else* /Cm a much different person this many years on* +he case manager still manages our case, but / feel that / can advocate for our family much better than / could bac8 then* / have a good understanding of the system* < Amy Ahen professionals are struggling to engage a family in ma8ing decisions or becoming involved in an activity to support their childCs development, it might be helpful to consider .hether; the supports or activities in :uestion have been designed collaboratively in relation to the familyCs goals and priorities, daily life and long-term capacity the professional is offering sufficient support for the parent or caregiver to ta8e an active role, for e-ample, by offering the chance for them to practise doing a tas8 .ith the child or young person .hen the professional is present, to build confidence, give reassurance and ad>ust techni:ue

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the professional can .or8 .ith other services involved in the child or young personCs situation 6for e-ample, in relation to their therapeutic activities in the home7 to tailor their supports to family capacity, therefore developing an integrated support plan the rationale for the familyCs participation has been clearly communicated the family is unable to engage due to unavoidable circumstances, or if they might be able to do so .ith more or different support? for e-ample, parents and caregivers might be eligible for more financial assistance or help .ith other responsibilities, allo.ing them more time for their family, or some might benefit from referrals to meet other needs, including their o.n, those of their child .ith a disability or other siblings it .ould be helpful to invite 6.ith the parents or caregiversC permission7 other family members or people in their informal net.or8 into the process* Social support for families is a 8ey factor in children and young peopleCs long-term outcomes,13 and creative planning processes, for e-ample, can help some families to identify that there are many more informal supports available to them than they realised; / feel privileged to be part of a (ircle of Support for a young boy .ho .as previously in our service M At the first meeting there .ere % people IallJ considering ho. they could have a role in supporting this family and child* A number of their friends had .anted to help but didnCt really 8no. :uite .hat to do* Having the (ircle of Support validated their role* < Service manager

98eleasing4 people4s capacity to ta&e action

0ritish health researcher $ennie Popay says many professionals assume people do not engage because they lac8 s8ills and capacity* She suggests most people .ill act on issues that matter to them if they believe action is li8ely to be effective* 0ut if their e-perience is that their vie.s or e-periences .ere ignored in the past, or that ultimate control of resources lies .ith professionals, then they .ill be reluctant to engage again* She suggests that rather than trying to HbuildC peopleCs capacity to engage, professionals should HreleaseC their inbuilt capacity by addressing issues that lead to reluctance, 11 for e-ample, by ensuring decisions are in the hands of service users and that their 8no.ledge and preferences do meaningfully inform planning and other processes* Professionals need to tell families that itCs important to be involved to ensure supports and services are tailored to them, and to address any other needs that might prevent their engagement* +his includes ma8ing sure they receive a positive, respectful response .hen they do engage* /n the end, a family or young personCs level of involvement is up to them* Bf course, some parents, caregivers and young people .ith a disability go beyond advocacy for themselves and become po.erful advocates for others and for broader positive change* Professionals can encourage service users to get more involved in their organisation, let them 8no. about advisory groups or consultations that .ill give them an opportunity to contribute to service system development, or put them in touch .ith community-based advocacy groups and associations* #any of these provide both support and advocacy for families, and an opportunity for families to become involved in broader change; +he Association for (hildren .ith a Disability provides support and information, individual advocacy, community education and public policy responses to improve the availability and delivery of disabilityrelated services* A(D helps families build confidence to navigate comple- support systems and provides tools to successfully mediate .ith service providers to achieve better outcomes for their children* < )li@abeth #cGarry, (hief )-ecutive Bfficer, Association for (hildren .ith a Disability

.!en %amilies are dissatis%ied /it! t!e ser#ice4s approac!

Sometimes the approaches services ta8e donCt at the outset meet familiesC e-pectations, especially in terms of one-on-one therapeutic activities* All services benefit from feedbac8, reflection and improvement, but sometimes families feel very dissatisfied .ith services that re:uire them, as a fundamental part of their approach, to ta8e an active role* Ahen this happens, this )(/ service manager says;

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&

Ae try to meet them half.ay, if thatCs .hat .e need to do for a short period to engage the family* /f it means having a small .in* So if they .ant one-on-one physio for a .hile, .e could start that process, but .e .ould al.ays be .or8ing to.ards giving the po.er bac8 to the parent* +here are definitely families that .ant more of a passive role* /tCs about 8eeping that conversation going* +he issue is, a child can come in for an hourCs session, but thatCs >ust t.o per cent of the childCs time for the .ee8* AhatCs really going to be effective is if .e spend the time teaching the parent activities that they can incorporate into their daily routine < that .ill have a far greater effect than the one hour of dedicated time .ith a therapist* +here are families .here .e have to start that .ay, especially if theyCve been transitioned from other services li8e hospital-based therapy services, or they have been seeing private therapists* So there is a transition bet.een the t.o models* Sometimes, people .ill remain dissatisfied .ith the level or type of support a particular organisation or service provider offers* Professionals need to do everything they can to address such concerns* +hey need to ensure; families receive all the supports they are entitled to .ithin and outside the service familiesC and other service usersC suggestions and feedbac8 are sought and acted on families and young people are informed about complaints and grievance procedures, and supported to use them if necessary*

/n the end, if the family is still unhappy, the professional should offer to help them find alternative sources of support and offer assistance to transition out of their service 6see /ngridCs story, page G&7*

Pull out 0o- - Personal perspective; Ainnie

Anecdotally there is a perception among service providers that (A"D families are less li8ely to engage actively or to advocate for their child .ith a disability* /f this is so, reasons might include familiesC perceptions of their role or the role of services, or inade:uate s8ills in cultural competence among professionals* As $ennie Popay says 6see above7, peopleCs e-periences .hen they do ta8e action can also have a ma>or impact* (onsultations for these guides included group intervie.s .ith several support groups for (A"D communities* Ainnie, a member of a group for parents from a ,orth Asian community, .as a strong advocate for her son at secondary school, having had Hregular meetings and an individual planC .hen he .as in primary school* Ho.ever, she says secondary school staff HdonCt meet .ith me unless / re:uest it* / .ent to a meeting and told Ithe schoolJ strategies for .hat to do .ith my son, but they didnCt do any of them* / gave them the contact details of Autism Victoria and the number of an autism school .ho .ill do outreach and .ill give some advice to mainstream schools, but the school never spo8e .ith them*C AinnieCs sonCs five hours of classroom support per .ee8 havenCt helped him* +he aide Hsits near himC, she says* H#y son doesnCt li8e it* He .onCt as8 her for help* Ahen she tries to help he ignores her* He tells me he is annoyed by this lady M KShe follo.s me all the time,L he says* +he teacherCs aide says that if she is sitting in the classroom, he sits on the other side of the room* / said to the school, K#aybe you could use the funding to help him in another .ayDL +hey didnCt M IAlsoJ, my son is %! minutes late for every class* Ahen the bell rings, everyone goes to their loc8er* /t is very cro.ded* #y son doesnCt li8e this* He .aits until everyone has gone to class before he .ill go to his loc8er* / as8ed the integration aide to come up .ith a strategy for this, but she hasnCt*C

/f you are concerned about peopleCs choices

Some situations re:uire professionals to act 6.hether or not they are mandated7 in the best interests of the child* Professionals should consider ma8ing a report to (hild Protection .here a child or young person is in need of protection and has or is li8ely to suffer significant harm due to emotional abuse or neglect and the parents have not or are unli8ely to protect the child* A referral to (hild F/9S+ may be the best .ay of connecting families to the services they need .hen they are e-periencing difficulties that ma8e them more vulnerable and impacts on the childCs safety, stability and development* &!! See the (hild, Nouth and Families .ebsite for more information about ma8ing a report to (hild Protection or a referral to (hild F/9S+* &!&

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/n some situations professionals .ill be .or8ing .ith families .hose choices strongly concern them but .hich might not .arrant a report to (hild Protection or referral to (hild F/9S+* /n such cases professionals should consider 6.ith support from their supervisor7 their role and responsibility to the child or young person and family and .hether; the familyCs decision or action poses a high level of ris8 and possible harm to the child or young person < to be decided on a case-by-case basis .ith the professional consulting their supervisor and .ith social .or8ers or others in their team, and .ith (hild F/9S+ 6they are not obliged to ma8e a referral7 they have gathered enough information from the child, young person and family, as .ell as from other services, to have a sufficiently informed opinion the professional is simply feeling challenged by values and choices that are different from those they might ma8e themselves in the same situation the course of action the professional .ishes to suggest is sufficiently informed by the familyCs priorities, and able to be implemented in a .ay that fits into family life the professional has provided enough appropriate, accessible information to the family or young person to ensure their decision is .ell informed the familyCs thin8ing might change .ith additional support, such as a second opinion, advocacy support or counselling? for e-ample, some families have had negative e-periences of medical care for their child .ith a disability and might be very reluctant to consent to further treatment, even if this decision has significant conse:uences for their childCs long-term health and development*

ProfessionalsC duty of care obliges them to tal8 to families about any practices or choices 6or aspects of a childCs environment7 that have the potential to cause harm* &!% Sometimes a concern .ill arise because of inaction, for e-ample, if parents or caregivers are not carrying out basic care procedures 6such as putting on an8le-foot orthoses7, resulting in ris8s to the childCs long-term health or development* As discussed, the appropriate response is determined by the ris8 and level of potential harm* /f this is serious, long-term or irreversible, a report to (hild Protection is .arranted* +he reality is that many families are dealing .ith multiple stressors, including homelessness, unemployment, poverty, mental ill-health, chronic illness and family violence, and .ill not al.ays be able to prioritise their childCs needs* /n ma8ing decisions about the best interests of the child or young person consideration must be given to the cumulative patterns of harm on a childCs safety, stability and development* For e-ample, one )(/ professional described a family in .hich both parents e-perienced mental illness; +he biggest issue from my perspective at the moment is that the child is not sleeping* So they canCt ma8e appointments, they canCt turn up to playgroup, they canCt handle anything because theyCre not getting any sleep through the night M but .hen it comes to ta8ing any action to deal .ith that, they arenCt ready to* )ither itCs not as big an issue for them as it seems to me, or theyCre currently not in a position to ta8e action, probably because they havenCt slept for a long time, and there are a lot of other things going on* Professionals need to refer families to other supports and services as re:uired and tailor their o.n support to the familyCs needs and capacity* /n many such cases 6as in this family7, there are multiple service providers involved* +he professional needs to ensure good communication and coordination .ith the other services, as .ell as appropriate monitoring of any factors that might develop into ris8s for the child or young person* Sometimes professionals .ill .or8 .ith families .ho are engaged in dubious HtreatmentsC for their childCs disability* +hese can be very e-pensive, time consuming and give people false hope for a HcureC, for e-ample, for Do.n syndrome or cerebral palsy* Bften the harm is limited to the familyCs finances and emotions .hen the HcureC proves ineffective? sometimes there are associated health ris8s* Professionals should consider the issues listed above, in particular the level of ris8 or potential harm of the practice* /f there seems to be little or no ris8, professionals might simply as8 :uestions about the familyCs e-perience of the efficacy of the approach and offer information about the credible evidence for or against it, ta8ing care not to ma8e families feel >udged for their choices*

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2 Practices that support choice and participation; fle-ible, responsive services and supports
Eey messages
Services can tailor service delivery to family life by offering appointments to fit family routines, delivering support in the home or other accessible locations, providing fle-ible service hours or offering support through telephone, S8ype or S#S te-t messaging* +hey can reduce the demands on families by offering support .ith administration, ensuring continuity of care, and sharing information 6.ith permission7 .ith other services* Professionals should be a.are of the demands they put on families, and .or8 .ith the family and their other services to formulate an integrated support plan matched to their needs and capacity* Services and supports should be tailored to a familyCs needs, goals and priorities* Professionals can do this through collaborative goal setting, see8ing out and reading all relevant information, and responding to the many .ays in .hich families differ, including in its ma8e-up, attitudes to disability and care, understanding of development and child rearing, and attitudes to gender and privacy* Professionals should integrate supports into children and young peopleCs natural environments* Families are generally best placed to implement many activities in the conte-t < and at the fre:uency < needed for them to be effective* Bther natural environments include 8indergartens, childcare centres, schools and recreation facilities* #any families .ant their children in mainstream services? sometimes professionals need to support those services to meet childrenCs needs, or support families to advocate for inclusion* Parents and caregivers themselves need support, including perhaps respite or referrals for various needs* Professionals should support siblings of children .ith a disability, for e-ample, by integrating them into activities, or referring them to siblings groups or family activities* Professionals can validate siblingsC roles by encouraging their participation in helping their brother or sister .ith a disability* Professionals need to respond to developmental changes and changes in family circumstances* #ost families find transition bet.een different settings or sectors stressful? professionals can assist by sharing information 6.ith permission7 and engaging in collaborative planning .ith the family and other services* Professionals need to ensure children and young people .ith a disability and their families can choose from options that are appropriate and relevant to their needs* +his re:uires both fle-ibility and responsiveness* Fle-ibility is about professionals being .illing and able to tailor services and supports to peopleCs needs and preferences* 9esponsiveness is about being alert and responsive .hen these shift* +he ability of professionals to be fle-ible and responsive .ill depend to an e-tent on their role and their organisationCs capacity* Some professionals are :uite autonomous in managing their time and deciding ho. to carry out their role* Some are more restricted, .hether by their role or level of authority, their >ob description or conditions, or the pressures of time, resources or funding* +he reality for most is some.here in bet.een* (hapter 1 and the organisational guide discuss .ays that managers and organisations can support staff to be family centred, including through more family-centred policies and processes*

Fitting in .ith family life

Fnless young people .ith a disability live independently, their lives are shaped by their family membersC various needs, schedules and priorities* Depending on conte-t, services might be able to tailor various aspects of service delivery to fit in .ith family life, including those belo.*

Family sc!edules and routines

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#any services ma8e efforts to schedule meeting, appointment and respite times that fit in .ith family routines, rather than simply advising families of .hen the service .ill be delivered* Families also appreciate fle-ibility in .hen supports are delivered; Ae can utilise our respite ho. .e choose* So / could have someone here every day at school time so / can pic8 up the 8ids from school, and have )mily here* Br / can put it in a bloc8, so )mily can stay here on a Sunday and the rest of us can go out bi8e riding or something* < Amy Ahen .e go out as a family, one of us invariably ends up loo8ing after Angela .hile the other parent participates in the activities, then .e try to s.ap* /t .ould be great if .e could ring and say, HAre you available for four hoursD #eet us here*C So there are an e-tra pair of hands to help Angela participate, or to >ust spend a bit of time .ith her, rather than her being in respite or being left at home* < (athy Some families have regular routines and appreciate professionals .ho try to fit in .ith them* Some families are much less li8ely to have regular routines, and professionals need to stay in touch, and be fle-ible; / al.ays tell .or8ers to ring families* Nou could say, HAhenCs a good dayD B8ay, /Cll come ne-t +uesday, letCs put it on the calendar* 9ing me if you need to change it*C 0ut nine times out of ten they donCt, so you ring the day before and say, H/Cm calling in to see you tomorro.* Are you right to have a yarn and a catchupD /s there anything you needD /s there anything youCve got in the last .ee8 that you need help .ithDC Aor8ers also need to give families that courtesy, to let them 8no. if they canCt come themselves* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8

2!ildcare needs
Sometimes it .ill be appropriate for the professional to meet .ith parents or caregivers .ithout their child* /n such cases families might appreciate assistance .ith childcare, or the fle-ibility of meeting .hen others are caring for their child 6for e-ample, during school hours7* /f a family has more than one child it can be very difficult for them to access many services and supports, especially if they donCt have informal supports to care for the other children, such as grandmothers or other relatives, or financial resources to pay for childcare* Families appreciate services that cater for the needs of siblings, .hether by scheduling groups and appointments to avoid school drop-off or pic8-up times, providing childcare for siblings, providing support tailored to their needs 6see #elissaCs story, page 4G7, or including them in activities; Ahen Samuel .as in early intervention, they .ould have stuff there for the younger 8ids to do, or theyCd encourage them to be part of the e-ercise* +hey almost built them into the program* #ost of us .ould be loo8ing for opportunities for the other 8ids not to be there, so you could >ust concentrate on one* 0ut all my 8ids got dragged from pillar to post, especially my oldest* So youCd be loo8ing for services that .ould accommodate their needs* < Paula

*ransport
Difficulties .ith getting to services can be a ma>or barrier to some families accessing support* Services can provide support for transport 6such as ta-is7, or offer to deliver supports in the family home or at childcare, 8indergarten, school or other community settings* Ahen meetings are re:uired .ith a parent or caregiver .ho is in paid .or8, the professional might offer to meet them at a cafe near the parentCs .or8place* Sometimes transport difficulties are such that it might be appropriate to offer support to parents or caregivers via telephone or even S8ype such as the families of the many children and young people .ho travel great distances to access special education settings* /t can be very difficult for some parents to attend regular face-to-face SSG meetings 6including arranging childcare7 .ithin .or8ing hours* Phone or S8ype meetings might be more appropriate for Hchec8-insC than for 8ey planning meetings*

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Ser#ice !ours
Fle-ibility in service hours might ma8e it easier for families to attend a service and help engage different members of the family such as parents in full-time paid employment* Sometimes fle-ibility in service hours .ill suit staff, but it is also important that this doesnCt undermine their conditions of employment*

2ommunication pre%erences
+he .ay people communicate is changing rapidly* #any people are comfortable using S8ype 6see above7, .hile a lot of young people use S#S te-t messaging and email as common forms of communication* Fsing these tools has the potential to enhance service .ithout significantly increasing service time, although it is important for services to be a.are of any implications for staff .or8ing conditions; Family-centred practice is about ma8ing time for relationships* Bne thing thatCs changed in our service in recent years is ho. .e do that* +hese days thereCs probably an hour and a half per .ee8 of funded family intervention* 0ut .e no. have :uite a fe. families .ho, in addition to our contact hours, have fairly regular S#S contact* +hatCs given an opportunity for some people to have better relationships because theyCve got more fre:uent contact* +hereCs a .hole age group of parents for .hom thatCs a more natural .ay of relating IalthoughJ .e have to be mindful of boundaries* < Service manager

Pull out 0o- - Personal perspective; Eate, Greg, $amie, #elanie and (allum
Eate and GregCs oldest child, $amie, has a pervasive developmental disorder, and their younger t.o, #elanie and (allum, both have AspergerCs syndrome* +he family has had to >uggle the e-pectations of many service providers over the years* Eate says; HNou might have an )(/ staff member, youCve got the 8inder teacher, youCve got the 8inder aide, youCve got the paediatrician* /f youCve got any medical issues youCve also got all those people M Nou get .or8ers .ho tal8 as if they 8no. everything, telling me .hat / should be prioritising* /Cm thin8ing, /)#e got fi#e specialistsM /tCs li8e they can see one entrance, but not the .hole house* /n the early days they .ould leave and /Cd >ust feel terrible about myself* /Cd thin8, /)m not doing that, but maybe if / was, 0amie would get better * H+hey >ust 8ept giving me tas8s to do or therapies to run, and failing to ac8no.ledge that / needed to loo8 after myself, because in the long run / still need to be able to function* /Cve felt .or8ers push and push to implement strategy after strategy? they didnCt see that, as a mum, / have to still be doing it in &% months, t.o years, five years, &! years* ,o. / often say to service providers, K/ >ust need to .or8 on one thing per child at a time* +hatCs all / can doL* +he ones .ho accept that have been good* Sometimes / feel theyCre >ust focused on the child* Some donCt see .here /Cm at, and my capacity, and thatCs been hard*C

Ser#ice le#els
Sometimes the more intensive forms of support a service offers 6such as groups or appointments7 .ill not suit a familyCs needs* An alternative might be to offer the family less intensive < but still proactive < support, .hile leaving the door open to more intensive engagement if the need arises; IBne mother / .or8 .ithJ has four children, t.o .ith autism* +heir days are so busy .ith so many different things that Ithe group-based supports offeredJ didnCt .or8 for her* Ae tal8ed about the different options, and in the end .or8ed out that the best thing .as for me to ring her once or t.ice a term* +hatCs .hat she needed from our service, >ust to tal8 through any issues, and if anything .as coming up that .e could help her .ith, then .e .ould* She .ould basically use us as a sounding board* < )(/ professional

9educing the demands on families

For some families, managing their childCs services and supports 6as .ell as their care7 can amount to an almost full-time role* /t can ma8e a significant difference to families .hen professionals are a.are of the demands placed on families by their service and the other services the family uses, and do .hat they can to reduce those demands*

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3%%ering support /it! administration

Some people prefer to manage their o.n supports* Some do not, or donCt have the capacity* Families appreciate being offered options for assistance on this level* Professionals should ta8e care to e-plain the implications of increased administrative or case management support for respite or attendant care hours, such as .ithin a funding pac8age*

,a(imising continuity o% care

Al.ays seeing the same one or t.o professionals reduces the need for people to repeat information* #ore importantly, it supports the formation of positive, effective partnerships* (ontinuity of care is a particularly crucial issue for some; I+herapistsJ need to get to 8no. your child* And the reverse < the child Ineeds toJ get to 8no. and trust the therapist, .hich is e-tremely important* +ransition is really important for Angela* First she needs to see the place I.here the therapy .ill beJ, then come bac8 another day* +hen she can .al8 into the room, chec8 out the bed she has to lie on, tal8 to the therapist, then go a.ay* /t .ill ta8e :uite a .hile for her to be comfortable to have someone touch her* /t too8 until last year for her to .al8 in :uietly .ithout having a complete meltdo.n, and me having to physically restrain her* /tCs a really big problem .hen .e donCt have that continuity of care* < (athy

S!aring in%ormation
+here are many .ays in .hich services can improve ho. they collect and manage the information of those they .or8 .ith 6see chapter 1 and the organisational guide7* Professionals should ma8e detailed notes so that families and young people .ith a disability donCt have to repeat information* +hey could offer to fill out forms 6such as funding applications7 .ith families or young people, or transfer previously collected information onto ne. forms* Bften it .ill be helpful for professionals to share information .ithin their team or .ith other services 6.ith permission7* NouCve got to tell your story again and again, even .ith the same agency* People .onCt read in a file about your situation* +hey cite things li8e privacy and confidentiality* Ae .ant that, but often itCs used as a barrier to sharing information* +hereCs no legal reason .hy they couldnCt share that information if you give your permission* < Paula

Follo/ing up and paying attention to detail

"ac8 of follo.-through by busy professionals is a common complaint from families, as are basic problems such as lateness or inattention to detail* Ahen a family relies on service providers to get through their day, a seemingly small mista8e by a service provider can have significant implications; For instance, a big bo- of continence aids arrives, you open the bo- and itCs the .rong sort* Nou havenCt got more, you havenCt got money to go and buy any M +he 8noc8-on effect from that is you canCt ta8e the child out* And you have to find the energy to try to get another bo-, and get rid of this huge bo- you donCt need* < Association for (hildren .ith a Disability family support .or8er

Impro#ing ser#ice integration

Professionals need to improve both communication and coordination .ith the other services involved in the lives of children and young people .ith a disability and their families to ensure the family is at the centre of the .hole range of their services and supports 6see page 2& on team.or8 and service integration7*

+ailoring services and supports

Fle-ibility is not only about reducing the burden on families that are often already overstretched, although this is important* /t is also about ma-imising the effectiveness of services and supports* +he evidence sho.s that

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parents and caregivers are much less li8ely to participate in early intervention, for e-ample, if its design or delivery is inconsistent .ith their goals, priorities or routines* &!4 )ngaging children, young people and families in goal setting and planning can greatly enhance the effectiveness of supports, as in DonnaCs e-perience of her daughter (aseyCs special development school 6see bo-7* Professionals need to .or8 .ith children, young people and families to design, implement and revie. supports and services* +his is about everyone contributing their 8no.ledge, e-pertise and resources, and .or8ing together to determine and ma8e use of the best mi- of informal, disability-specific and universal supports and services to meet peopleCs needs* +his .ill mean different things in different conte-ts, as e-plored in the sector-specific guides that form part of this suite* Eey elements common to many settings are e-plored belo.*

Pull out 0o- - Personal perspective; Donna, 0en, (asey and family
H+he greatest source of support, .ithout :uestionC for (asey and her family 6in terms of service providers7 during the &! years of her life .as her special development school* 0ut although (asey had comple- medical needs and a severe intellectual disability, she and her family also had a very positive e-perience of a universal service, in the form of family day care* H/tCs funny,C says (aseyCs mother, Donna* H/ never thin8 of it as a support service because I(aseyCs older brotherJ 0en also .ent to family day care* I0utJ my family day carer too8 on an a.ful lot, and the council provided her .ith a lot of support so she could loo8 after (asey*C Some of the many positives about (aseyCs school .ere that Donna 8ne. her daughter .as safe at school and that the school partnered .ith Donna to ma-imise (aseyCs participation in learning* H+hey brought e-pertise to the table in education, and / brought my e-pertise to the table in terms of being (aseyCs mum,C Donna says* HBur goals .ere for her to become more independent in small .ays*C H+hey got to 8no. (asey as a person, and through 8no.ing her personality, they 8ne. .hen to push her and .hen to bac8 off* +hey 8ne. .ho .as .ho in the family* +hey 8ne. the right :uestions to as8 ImeJ, so they could tal8 about those things .ith (asey* +hey 8ne. about .hat the family did and .hat (asey li8ed to do at home* (asey adored .atching her brother play bas8etball < they 8ne. about that and tal8ed .ith (asey about it at school* +hey 8ne. that my mother, her grandmother, .as also very important to (asey*C

*a&ing a lead %rom %amilies

Professionals need to ta8e their lead from children and young people .ith a disability and their families in the planning, design and implementation of services and supports* +his means finding out ho. things are done in that family and tailoring supports accordingly* Ho. a family does things is often an e-pression of their values and priorities* +his can impact on many aspects of their supports and services, from their long-term goals to; M tiny things, li8e should )mily have her teeth brushed and face .ashed .hen she first .a8es up, or once sheCs in her chair and has .o8en up a bitD Ae have our o.n .ay, and / thin8 /Cd hate to be .o8en up .ith a free@ing cold face .asherQ < Amy +he easiest .ay to find out more from a child, young person or family about ho. things .or8 best for them is to as8* Ho.ever, families also appreciate professionals .ho ma8e the effort to read all the available information about their family, .ho can observe their needs, and .ho record information and share it .ith others in their team .ho might be involved in delivering support* Professionals need to gather 6.ith permission7 and read all information available about the child or young person and their family, including case files, communication boo8s and reports from other service providers*

2ommon areas o% di%%erence

Families are diverse in many .ays, but there are some common issues arising from such differences that impact on design and delivery of services and supports; Aho is part of the family and ho. are relationships definedD +his might impact on .ho is included in planning, decision ma8ing and communication, and .ho ta8es an active role in implementing supports*

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Aho ma8es .hich decisions, and .hat is the division of labour in the family and householdD Aith this in mind, .ho needs to be included in decision ma8ing and implementation of services and supportsD Ho. does the family manage everyday life, including meals, transport, leisure and cultural or religious observances and celebrationsD +his might impact on the nature and timing of supports and .hen appointments should be scheduled 6for e-ample, not during times or days of religious observance7* Attitudes to disability, including .ho is responsible for caring for people .ith a disability; these might impact on the .ay people understand disability 6.hat it is and ho. it comes about7, .hich might then influence the 8inds of services and supports they are interested in, including .hether they are open to respite or other support services* Attitudes to authority and self-advocacy; these might impact on ho. .illing people are to actively as8 for services or advocate for themselves, .ith implications for ho. professionals themselves interact .ith people and see8 their vie.s, as .ell as for ho. they might support people to advocate for themselves* Fnderstandings of development, 8no.ledge, abilities and social roles at different ages; these might impact, for e-ample, on .hat abilities children might be e-pected to develop at different ages* As mentioned, .hen .or8ing .ith a family from a culture .here children are routinely hand-fed until age five, it .ould ma8e no sense to include this as an assessment criteria or goal for a younger child* Attitudes to gender roles, relationships and separation of the se-es in different spaces; these might impact on the gender of the support provider or the nature of the supports and services suggested* For e-ample, many cultures re:uire separation of the se-es after a certain age, ma8ing single-se- groups, activities and facilities much more appropriate than mi-ed-se-* Ahich matters can be discussed openly, and .hich are private; this might impact on .hen, ho. and in .hose company professionals raise HsensitiveC issues .ith children, young people and family members* +he level of comfort .ith people other than family being in the home or involved in personal care* /nterpersonal communication style, including attitudes to touch, personal space, e-pressing disagreement, eye contact or pauses; these .ould impact on .hat non-verbal signals a professional should be cued into 6including un.illingness to verbally e-press disagreement or discomfort7 and ho. they might ensure the appropriateness of their o.n body language*

Professionals also need to respect and respond to the cultural needs of children and young people .ith a disability, as they are central to their identity and sense of self* +his might be especially important for those children .hose medical needs or disability have restricted their access to cultural 8no.ledge or events; Bf course there is a need to provide the child .ith a .heelchair or speech therapy or B+, but cultural needs are >ust as important to a childCs .ellbeing* /s the child able to attend festivalsD Ahat can be done to help them engage .ith other children from their cultural bac8ground .hen they are in a special schoolD < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8
:sing natural learning approac!es

/t is no. common practice .ithin )(/ and allied health practice to integrate supports into children and young peopleCs natural environments, including their care, play, household or family activities, schooling and recreation* Strategies embedded in family activities include; .ays of carrying children that build their strength? .ord and clapping games that support speech and social s8ills? climbing activities in the bac8yard or par8 that help .ith balance and gross motor s8ills? and toys or household tas8s that help .ith fine motor s8ills; Ae are .or8ing .ith a young mother .ith t.o boys .ho have autism* Bne thing she told us .ould really ma8e a difference .as if she could en>oy playing .ith her sons* +hatCs been our focus* "ast .ee8 .e spo8e on the phone, and / could hear her boys laughing, .hich /Cd never heard* She herself .as clearly happy* Her life had changed* +hat .as >ust a very simple program of &!-minute fun activities our speech

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pathologist had .or8ed out* +hey .ere ma8ing this huge difference to her* 0ut it needed us to affirm that having fun .ith her children is a good thing to focus on* < )(/ service manager Some activities .ill be most effectively performed by professionals, perhaps due to the s8ills re:uired or because children and young people respond differently to someone .ho isnCt their parent or caregiver; Parents 8no. our children best, .e advocate for our children, .e tal8 to them every day* / do reading and .ords .ith )lla* 0ut four months ago .e started .ith a ne. speech therapist* She sits .ith this child for half an hour, and they get more done than / could do in a month* / canCt teach her on my o.n, / donCt have the s8ills* Plus, sheCs my child and she 8no.s itQ Ahereas if a therapist sits .ith her for an hour she behaves very differently < as 8ids do for someone .ho is not their parent* < /ngrid Net as described by the )(/ service manager on page 4, most professionals are li8ely to be .ith a child or young person for only an hour a .ee8 or fortnight* Parents and caregivers are childrenCs first and best teachers, and are generally best placed to implement many activities in the conte-t < and at the fre:uency < needed for them to be effective* Professionals need to clearly e-plain the rationale and evidence for family involvement in therapeutic activities* /f the design of supports starts .ith activities the child, young person or family already do or are interested in doing, or the goals they .ant to achieve, they are more li8ely to do the activity regularly, ma8ing the goal more achievable*

Identi%ying appropriate locations and ser#ices$ supporting inclusion

Bften the most appropriate natural learning environment is the home, but other environments might be 8indergartens, childcare centres, schools, sports clubs, recreation facilities, libraries and community centres* Sometimes being in other environments can result in e-tremely fruitful partnerships and e-cellent supports for the child or young person .ith a disability, their family and the mainstream service provider 6see DeborahCs story, page 2%7* /n some cases, .or8 might be needed to build and continuously support the capacity of staff in these settings* A professionalCs capacity to do that .ill depend on factors li8e their role, their organisationCs policies, time, resources and the .illingness and capacity of staff involved* +he suggestion that staff might help facilitate natural learning should be discussed .ith the child or young person and the family* /n school settings, .hile educators and integration aides are not e-pected to be therapists, there might be activities important to a studentCs development that can be incorporated into their learning, in both mainstream and specialist settings; IAe collectJ information about ho. .e can support the family in their home if there are sensory issues or issues .ith sleeping* Ae could loo8 at doing a sensory profile .ith the B+? loo8 at .hat the parents could do and ho. .e could help at school* A number of children come in .ith very limited diets, so >unior primary teachers have been gro.ing vegies .ith the children, and doing a coo8ing program, .hich has encouraged some children to try different foods *** / sometimes find parents are at their .itsC end < .e can develop behaviour management techni:ues in the classroom that parents can do at home* < Special development school teacher Sometimes strategies might be specific to the child or young person .ith a disability, such as using a special chair or des8* Ho.ever, it is also important to promote inclusion by incorporating supports for students .ith disabilities into the .hole environment*&!G For e-ample; a physiotherapist might develop activities that can be used in a physical education class? a speech pathologist might offer .ord HgamesC that can be used in class? or a 8indergarten could create a H:uiet time areaC or sensory activities for use by all children* #any families .ant their children to be integrated into mainstream environments, educational and other.ise* /ndeed, disability-specific services .ill al.ays need to complement the support provided by informal net.or8s and universal services* Sometimes mainstream services .ill need support to meet the needs of children and young people .ith a disability 6see DeborahCs story, page 2%7? sometimes advocacy .ill be needed to bring them on board 6see AlisonCs and PaulaCs stories, pages &GG and &337* +his is about peopleCs right to inclusion* /t is also about valuing the diverse and uni:ue contributions that people .ith a disability ma8e to the community .hen their meaningful participation is supported;

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/ bumped into Ia mum from #ichelleCs classJ a couple of months ago and .e .ere chatting* She said to me, HAhen #ichelle started at the school, / didnCt 8no. .hat .as going to happen* / 8ne. nothing about disability and / .as 8ind of scared of her* 0ut by the end of the year / realised she .as >ust li8e any other 8id*C And / thought, 1ood on you (ichelle, you)#e taught someone something2 +hat sho.s .hy integration is so important* +he fact that this mother could admit it, that .as great* She .as open and positive, and learned from the e-perience* +hatCs .hy .e need support, so 8ids gro.ing up can realise that 8ids .ith disabilities are part of the diversity of life* < #elissa

Supporting parents and caregi#ers

Families very much appreciate professionals .ho sho. an understanding of the multiple pressures on families and the needs of other family members* #any parents and caregivers find the various stressors associated .ith caring for a child .ith disability 6especially .ith inade:uate support7 can put a considerable strain on their relationship, .ith negative conse:uences for their o.n emotional .ellbeing, and for their children; For the first t.o years .e .ere crying all the time* Ae didnCt go out* Ae .ere so isolated* #y husband and / .ere fighting and not sleeping together* Bn the inside he .as blaming me for the disability* Ae didnCt 8no. anything about the disability or services that could help us* +he first service to see people in these situations needs to give 8no.ledge about the disability and .hat .e can e-pect in the future* Ae had no idea* < #iriam, member of a support group from a #iddle )astern community Professionals al.ays need to offer families information about their support options* +his is especially so for families from marginalised communities* Professionals also need to help parents and caregivers understand ho. to navigate the service system, for e-ample, by providing information about services and government departments and assisting in meeting re:uirements li8e filling out forms* Bften families .ill have a letter from the hospital, or school, or (entrelin8, and theyCll as8, HAhat does it meanD Ahy does he have to go and have grommetsD Aho gets this informationD Ahy do / have to sign itD Ahere does this goDC +hat fear factor < itCs ingrained in us, unfortunately* HAho needs to 8no. all this stuffD AhyDC / try to get them to understand that M itCs the same form for everybody, IandJ .hilst paper.or8 is hard to fill out, itCs confronting, but itCs necessary to get the funds to do the .or8* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8 #any families have nobody in their net.or8s .ho can care for their children to give family members a brea8* Some families go for years giving around-the-cloc8 care* 9espite can provide .elcome relief for many, and give parents time to reconnect, especially .hen one parent has been providing more of the day-to-day care; / have respite from the council once a fortnight, so my husband and / can spend time together* Nou can become :uite resentful of your partner .hose life doesnCt seem to have changed that much* So it .as good for us to reconnect by >ust going to the pictures, having a night off* < Daniela Some families do not .ant other people to loo8 after their children, or do not .ant to be a.ay from them* Professionals should respect their choices and find other .ays of giving support such as; a disability support .or8er to assist .ith care .hile the parent is at home? support to enable the parent or caregiver and child to ta8e part in events or celebrations in their community? or referral to a playgroup or other community-based group to help reduce social isolation* -motional support and appropriate re%erral +he roles of many professionals involve a component of emotional support for parents and caregivers* )motional responsiveness is critical to family-centred support and building trusting relationships* Ho.ever, it is important that professionals recognise the limits of their role or s8ill set and refer appropriately to address emotional support needs .hen they are e-pressed* Say your relationship is brea8ing do.n* +he case manager has been focused on getting you incontinence products or a bi8e* /tCs an intimate thing to say, H#y husbandCs not coming home until 3 oCcloc8 at night and no. this is happening MC Nou need to be able to trust that person, and that you .ill

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get a result from saying that, li8e a referral to a family relationships service for carers, or more respite to .or8 through some of those issues* < Association for (hildren .ith a Disability family support .or8er Professionals might need to refer families to supports and services to help them deal .ith a range of stressors, including social or geographic isolation, poverty, homelessness, family violence, mental ill-health, drug and alcohol issues and chronic illness* 9eferrals might need to be supported 6that is, professionals might need to do more than provide information and a phone number7, and ongoing liaison might be needed .ith the other service provider*

Supporting si"lings
Addressing the needs of siblings is a crucial but sometimes neglected aspect of family-centred practice* /tCs important not to generalise about the e-periences of siblings of children and young people .ith a disability* +heir needs and choices vary .idely, and their feelings about having a sibling .ith a disability can also vary a lot over time* According to the Association for (hildren .ith a DisabilityCs 1rowing together boo8let,&! such e-periences and feelings can include; increased compassion, understanding and maturity compared .ith their peers isolation, if they are not in touch .ith other siblings of children .ith a disability embarrassment arising from the negative reactions of others in the community anger and resentment, perhaps because of the impact of their siblingCs disability on their family and the increased time and resources ta8en by that sibling responsibilities beyond those of their peers pride, love and >oy about their siblingCs achievements lac8 of information about their siblingCs condition and an-iety about it, including an-iety about their o.n future and that of their family and sibling grief and loss for the Hsibling they didnCt haveC, or if their sibling dies feelings of pressure to be perfect, to Hma8e upC for .hat their sibling cannot do frustration about limited opportunities to become independent of their family and caring role closeness .ith their sibling .ith a disability but sometimes difficulty .ith communicating or playing guilt, for e-ample, that they are not helping enough, or that they can do things their sibling cannot do protectiveness, and a role in advocating for their sibling or supporting them to advocate for themselves*

Sometimes addressing siblingsC needs involves helping parents and caregivers deal .ith the response of their child .ith a disability .hen a ne. baby arrives; Ahen my other daughter .as born .e had huge issues .ith )lla* )lla .as very violent to.ards her* /t .as a nightmare, the dar8est days / have ever e-perienced* / .ent to her teacher at school and said, HAhat do / doD / need helpQ / am not coping*C +ogether .e put together social stories* +he teacher sent stuff home for me to .or8 on .ith her and spo8e about it .ith )lla at school* < /ngrid Sometimes professionals can support siblings by validating their brother or sister .ith a disability; Ae .ere having issues at home .ith one of #ichelleCs brothers saying, HAhy did she have to be bornDC At that time #ichelle had been trying really .ell 6at school7* / .ent to the school and as8ed if she could have an a.ard or something in assembly, to sho. that sheCd been achieving* / said, H/Cm as8ing this for t.o reasons* Bne is for #ichelle* And the other is for her brother*C +he teachers said, HGreat ideaC, and they did it* And / thin8 itCs changed the tone a bit because #ichelleCs not al.ays >ust in trouble* / donCt thin8 StefanCs had an a.ard, but #ichelle hasQ < #elissa Sometimes professionals can assist by integrating siblings into activities 6see PaulaCs story on page &337, referring them to siblings groups or all-inclusive family activities 6see #elissaCs story on page 4 7 or providing

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care for them during respite* +hey can also validate siblingsC roles and support family relationships by suggesting or supporting creative .ays to include them in helping their brother or sister .ith a disability; / .as .or8ing .ith a family .ith a young son .ith autism and t.o other teenage boys* +he family .as struggling .ith the youngest brother thro.ing things, and his behaviour generally* +he teacher and / encouraged the family to implement a lot of early intervention strategies, and / as8ed if the older brothers could help* +he mother said that until they started doing this, the siblings had ignored their little brother* +hey used to go into their room, and had nothing to do .ith him* 0ut after that, it .as >ust ama@ing < the siblings helped this child come to a point .here he is no.* +he principal of the school he is transitioning into rang me to say she canCt believe ho. much his social s8ills have improved* His brothers .ere doing little videos of .hat you should do .hen you greet people, to say hello and goodbye* +he siblings got involved, and got him involved* < )(/ professional

0in&ing people into community

Social inclusion and community connectedness are .idely recognised as 8ey factors in peopleCs emotional .ellbeing*&!5 Strong informal net.or8s of support are a 8ey factor influencing improved outcomes for children, young people and families* /ndeed, evidence suggests that other aspects of family-centred practice are less effective .ithout such support*&!2 Ho.ever, consultations for these guides highlighted the common e-perience among families of increased social isolation 6see DanielaCs story, page 41 and loss of social supports* Ahen / .as thin8ing about mainstream or special school, a friend said to me, HAell if you as8 me, integration has never .or8edC, .hich shoc8ed me* Ahen / started #ichelle at Ia specialist integratedJ 8inder, another said, H/snCt it good theyCve got places li8e that for people li8e herDC Ae had a big circle of friends, but there .as this segregation, no understanding that #ichelle needs to mi- .ith mainstream 8ids* / got tired of fighting* )ven my in-la.s donCt 8no. ho. to handle her? they say, HShe .as so good todayC, li8e they e-pect her to run amo8* Nou get these attitudes every.here < it gets tiring* < #elissa Professionals should offer people options for lin8ing into the community* Some .ill gain most from lin8ing into their local community* #any service clubs have grants programs and discretionary funds that can be used for one-off purchases for members of their community .ith special needs* "i8e.ise, service clubs, places of .orship and other similar organisations can often assist .ith transport, day trips and social support for people .ho are socially isolated* ,eighbourhood houses often host support groups and provide lo.-cost classes* Aboriginal and (A"D families should be offered information about mainstream groups, but many .ill also appreciate information about groups and other supports targeted to their cultural community, especially if mainstream groups are based on a different approach to disability and care from their o.n* /n Ithe AboriginalJ community, itCs very rare that the person .ith a disability and their carer is separated because the carer feels a duty to care for the person .ith a disability and the person .ith a disability doesnCt .ant to be .ithout the carer* Bften people donCt engage .ith support groups because their carer is not invited, itCs for them* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8 For some families it .ill be important to ma8e lin8s .ith other people facing similar issues, such as parents and caregivers .hose children have similar diagnoses or .ho are at a similar developmental stage* Support groups, play groups and carer support services can be good options, .hile online groups are helpful to many 6some are moderated by professionals .ho offer support and referral, but others are not7* Professionals should also offer support to children, young people and families to engage in groups, especially if they donCt have a history of community participation* For e-ample, people might appreciate meeting the coach or another person from the local sporting club or the convenor of a support group before attending a session* Professionals can provide ongoing support by as8ing ho. it .ent, encouraging the family or young person to reflect on ho. the e-perience did or did not meet their needs, and 6in the latter case7 .hat other 8inds of groups or supports might .or8 better for them*

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#any people spea8 positively about their e-periences of groups, and many e-perience them as a lifeline* 0ut groups are not for everyone* /f someone says they are Hnot a group personC, professionals should respect that choice, .hile leaving open the possibility that they might change their mind later on*

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*ailoring supports to people4s capacity

Professionals must tailor services and support to the capacities of children and young people .ith a disability and their families* Doing this .ell is a fundamental s8ill* Ae had a fantastic young speechie, a real gem* She had come up .ith this .hole program of %! minutes a day that mum could do at home after her daughter got home from school* She laid it all out, and the mum said Hyes, yesC* +hen the speechie left, and / said, H9ight, letCs tal8 about .hat .eCll really doC* +he mum burst into tears, and tal8ed about ho. impossible it .ould be, ho.ever nice it sounded* Ae ended up arranging for the speechie to .rite do.n for mum e-actly .hat she .as doing .ith her daughter .hile at school, so that .hen she could, mum could also support that at home* 0ut the rest of the time, / encouraged her to >ust en>oy being .ith her child* < Sue, principal of a special education school A critical issue for many families is that although the e-pectations of one professional might be reasonable in isolation, in combination .ith everyday pressures and the e-pectations of all their other service providers, they can become unmanageable; Nou visit therapists or doctors and they say, HNou need to do this five times a day, you need to do this three times a day, you need to do this t.o times a day, or your child .ill not reach their potentialC* +hat pressure is e-traordinary* And youCre saying, H+hatCs all .ell and good, but in the meantime /Cm also caring for another child, trying to get to appointments, trying to manage a house, do the shopping, feed every three hours* /tCs >ust not a realistic goal* As a parent sometimes you need to say, H+hatCs >ust impossible, please suggest something achievableC* < (ass +ailoring supports includes chec8ing in regularly to see if an approach is still manageable and identifying any additional support needs that may have arisen*

9esponding to change
Professionals need to recognise and respond to a variety of changes that affect children and young people .ith disabilities and their families, including developmental change* Human development is a comple- and variable process, and change is usually incremental* Sometimes parents and caregivers recognise it easily* Sometimes a professional might be the first to observe it* +here should then be discussion about any impact the change might have on the goals and design of services and supports* Ahether the child or young person has increased capacity should also be discussed* /f they are able, they should have a say in any planning or implementation issues that arise* Professionals also need to be responsive to the many other changes that affect peopleCs lives* Families might manage their time and resources differently 6and perhaps need more or different support7 .hen a baby arrives or other challenges arise; the death of a grandparent? changes in housing or employment? parental separation? or illness 6including hospitalisation7 of a parent, caregiver, other family member or the child or young person .ith a disability themselves; Very early on .hen )mily .as spending a lot of time in hospital, / .as trying to >uggle the other t.o 8ids, and my >ob and my husbandCs >ob* Ae had a good amount of respite, but .hen she .as being cared for in the hospital .e .ould lose it all* / found that so hard* /f ever / needed someone to mind her, it .as then, .hile / .ent to pic8 Anthony up from 8inder, or .ent home to have a sho.er* )mily fractured her leg .hile she .as in there < it .as bro8en someho. .hile / .asnCt around* /Cm sure it .as an accident, but at the end of the day / felt that she had to be monitored :uite closely* < Amy Bur case managers have really assisted our family through some difficult times* /n our chaotic life they al.ays seemed so organised* +hey have al.ays been in tune .ith .hat .as happening in our family, especially during times .hen .e needed e-tra help, li8e .hen SamuelCs brothers .ere born* +hey spo8e to us beforehand, and .e discussed .hat additional help .e might need* /t .as reassuring to have a plan in place and 8no. that they .erenCt going to say, C+hereCs no more funding leftC* < Paula

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Some families and communities e-perience more change than others, for a variety of reasons, and re:uire a higher level of fle-ibility and responsiveness from professionals and services to meet their needs; A .or8er might come in and say, HNou can do this, and put this in placeC, and it might .or8 for a couple of .ee8s, and then thereCs a funeral, or thereCs been a family violence matter, or they all get up and go a.ay, or the routine changes* /tCs really hard for the community to understand routine for children .ith disabilities because theyCre >ust part of the mob* Aor8ers shouldnCt feel that this part of the .or8 is a failure, they need to be fle-ible M IAlso,J there are a lot of e-pectations on parents, but if they canCt do it, then they canCt* Aor8ers have got to be pretty fle-ible to say, HAeCll >ust give it a go, >ust 8eep going until you get .hat you needC < that the child gets after-school care, or a .heelchair, or the family gets a caption +V, or a fire alarm they can see* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8 +ransitions, especially bet.een different settings or sectors, can also be periods .hen families re:uire higher levels of support from professionals* +hese can be especially stressful times, and people sometimes struggle to find their feet and define their needs in the conte-t of practices and funding models that might differ greatly from those they have encountered before* Shifts bet.een practitioners, service providers and funding pac8ages can also have an impact* Professionals can support families during transitions by; offering to share information .ith other services 6.ith permission7, including medical and other personal information, effective 6and ineffective7 approaches to .or8ing .ith the child or young person and information about the needs and preferences of the child or young person and family offering to engage in collaborative planning .ith ne. services or advocating for the child or young personCs needs .ith the ne. service 6see PaulaCs story, page &337 engaging in processes to support transition 6such as transition statements for early childhood educators7 offering ne.ly engaged children, young people and families information about ho. their service .or8s 6including its family-centred approach, especially if it differs from those they have encountered before7 and ho. it fits into the .ider support system offering support for families transitioning into and out of the service*

Professionals should also consider their o.n and their serviceCs responsiveness to change, and in particular their processes for revie.ing the services offered to children, young people and families, to ensure they stay in touch .ith both developmental and environmental changes* +hey need to as8; ho. often revie.s occur, at .hat points, and .ho can initiate them .hat :uestions are as8ed in revie. processes, and of .hom ho. children, young people and families can communicate to the professional or service .hen their needs change at other times*

During transitions bet.een sectors, organisations or service types, families might be confused or find it difficult to define their needs in the conte-t of differing practices and funding models* /t is vital to discuss .ith families ho. changes for their child or family might impact on the supports they have*

Pull out bo- - Personal perspective; Anita, Peter, #ichael, 9yan and (laire
HAhen #ichael .as young,C says his mother, Anita, Hli8e for any other child, / made the decisions* As he got older, / started to realise he should have a say* / still manage overall, but he has choices .ithin that* For instance, .hen heCs doing reading and numeracy tas8s .ith a carer, #ichael chooses .hat to read, or .hat game to play*C Ahen her son .as a young teen, Anita realised that other boys his age .ere often out in the community* #ichaelCs regular carer then H.ent do.n the street every Saturday morning for t.o years .ith him, supporting and gro.ing his s8ills in finding his .ay, safely crossing roads, and using money* /tCs given #ichael a real measure of independence, a real self-esteem boost* He says to me no., K/Cm going do.n the street to get a DVDL* /tCs great, because li8e any young adult he has that freedom*CH#ichaelCs got ambitions,C Anita says* HHe .ants to drive a silver #a@da, to live in "ondon, he .ants a girlfriend, and to .or8 in a video shop* He is >ust li8e any other teenagerQ As much as anything, he .ants independence* He doesnCt .ant me to go .ith him because /Cm his mother*C

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+echnical :uality

Eey messages
Professionals need the e-pertise to deliver high-:uality services and supports to benefit children and young people .ith a disability and their families* 9esearch sho.s that a significant barrier to family-centred practice is .hen professionals are trained in models .here the service provider is seen as the e-pert* As evidence gro.s of the efficacy of family-centred practice, the s8ills it re:uires are li8ely to be more highly valued, and to be emphasised in pre-service and continuing professional education and professional standards* Professionals need to find or develop family-centred tools and methodologies in inta8e, assessment, planning, design, implementation, monitoring and evaluation of services and support, .hich .ill enable them to dra. upon the rich 8no.ledge that children, young people and families have of each other* #ost families have multiple service providers, and .ould benefit from increased service integration, from professionals sharing information 6.ith permission7 to coordination, collaborative planning, integrated support and highly developed partnerships* At a minimum, it includes professionals developing referral and secondary consultation relationships .ith other 8ey services* Self-care is important for occupational health and safety and professionalsC capacity to .or8 .ell .ith children, young people and families* /t includes clinical supervision, debriefing after difficult or critical incidents, regular debriefing and chec8-ins .ith a supervisor, peer support, brea8s and holidays, and professional development* Bne important aspect is the maintenance of appropriate personal<professional boundaries .ith families? these vary by culture and conte-t but are best set by organisations and should be clearly communicated to staff and families* (hildren and young people .ith a disability and their families rely on professionals to have the 8no.ledge, e-perience and s8ills < the e-pertise < re:uired to deliver high-:uality services and supports* Professionals gain and maintain e-pertise through their pre-service training, e-perience, supervision, net.or8ing, secondary consultation, reading and ongoing professional development* Aithin family-centred practice, technical :uality is about ho. service providers apply their e-pertise for the benefit of 6and in partnership .ith7 those they are .or8ing .ith* +his guide touches on some of the areas of technical e-pertise that are most applicable across all sectors, and most relevant to family-centred approaches* +he sector-specific guides drill do.n into other areas of e-pertise pertinent to each setting* Family-centred practice is, of course, only one element of high-:uality service delivery* (urrent thin8ing in best practice more broadly can be accessed through professional >ournals, training and further education* #any professionals also hold leadership positions, and their approach to management can influence staff membersC capacity to .or8 in family-centred .ays 6see chapter 1 and the organisational guide7* Professionals need a .ide range of technical 8no.ledge other than that specific to their discipline or training* +his includes 8no.ledge of; various conditions and disabilities? colleaguesC modalities? the services, processes and procedures of their and related services? funding and the policy environment? and the impact of privacy la.s, including on sharing information bet.een family members and services*

Family-centred practices as core professional s8ills

Professionals need to understand family-centred practice as an approach rather than an end in itself; Sometimes staff get mi-ed up bet.een family-centred practice as a vehicle to get to the outcome, or family-centred practice as the intervention* So they start to say, HNou donCt need my e-pertiseC* +he ans.er to that is, HNes .e do, but .e also need you to be able to .or8 in this .ayC* /tCs about not thro.ing the baby out .ith the bath.ater* < Service manager

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As discussed, family-centred practice re:uires a shift in po.er and authority from the professional to the family* Various researchers have identified challenges that family-centred practice poses for professionals, especially those .or8ing outside a family systems model, .hich considers the parent<child relationship as part of the HinterventionC*&!3 Some researchers have found that a significant barrier to family-centred practice in some sectors is that many professionals .ere Htrained in models, such as the medical model, in .hich the service provider .as seen as the e-pertC*&!1 Bne Australian study focused on professional issues for physiotherapists, finding that Hmoving to.ards a family-centred focus creates significant challenges for more traditionally trained physiotherapists in the .ay they gain and utilise information from patients and family membersC*&&! Some professionalsC pre-service training might not have emphasised 6or addressed7 familycentred approaches to core s8ills and competencies, or seen family-centred practice as a s8ill in itself* As evidence gro.s of the efficacy of family-centred practice in various settings, this is li8ely to change* /ndeed, changing approaches in )(/ led to the development, in %!!1, of a set of professional competencies that put family-centred approaches s:uarely at the centre of practice* &&& #ean.hile, many services continue to provide comprehensive orientations to the approach for ne. staff* (onsultations for these guides also highlighted some innovative approaches to practice change, including mentoring and reflective partnerships 6see the organisational guide7*

Fsing family-centred tools and methodologies

Professionals need to find, develop and use appropriate tools to dra. upon the 8no.ledge of children, young people and families in inta8e, assessment, planning, design, implementation, monitoring and evaluation of services and support* For e-ample, research indicates that most parents and carers have a very good understanding of their childCs development and disability* Bne study found that parents as8ed to estimate areas in .hich their child .as developmentally delayed .ere 3! per cent correct .hen their responses .ere compared .ith the 0ayley motor scale* Furthermore, it found that parents .ere correct 1& per cent of the time in estimating if their child .as on target in their development* &&% #any tools and methodologies are available to professionals in each sector and professional setting, each .ith their o.n strengths and .ea8nesses* Ahatever is used should go beyond the Htic8 a bo-C approach and allo. the professional to develop a Hrich, strengths-based account of the child Ior young personJ incorporating their and their familyCs perspectivesC*&&4 (onsultations for these guides revealed many e-amples of e-cellent practice, but also that this is not every familyCs e-perience; +he paper.or8 is ridiculous M Iit as8sJ the same :uestions every time, not getting to the ne-t layer M Nou 8no. my childCs diagnosis, ho. old she is, .hoCs in the family, .hat medication sheCs on, is she toilet trained, can she feed herself* 0ut does that tell you ho. (asey lives her lifeD And does that tell you .hatCs important to (asey and us, for (asey to be the best and happiest she can beD < Donna Professionals also need to dra. on parents and caregiversC 8no.ledge of their child in relation to ho. to conduct assessments? not doing so can have significant conse:uences; / 8ept saying, HAarn me .hen you do Ithe /R testJ because / need to e-plain to her .hatCs going to happen that day so sheCs in the right frame of mindC* #ichelle is one of these 8ids that li8es to muc8 around, li8es to get reactions out of people and ma8e people laugh* SheCs >ust a 8idQ +here came the day, / got this phone call at && oCcloc8; HAeCre doing the test todayC* And / said, HAell good luc8 because she hasnCt been prepared, sheCs got no idea .hat sheCs doingC* And sure enough thatCs .hat happened* She got into the room, and 8ept doing the .rong thing, trying to get a reaction* SheCs never seen this lady* So she 8ept mar8ing everything .rong and came bac8 .ith an assessment of /RG3, .hich meant if / put her in a special school, it .ould have to be a special development school* / 8ne. she didnCt belong in an SDS, but the psychologist refused to change it* Nou can as8 them to re-do it, but they only do it every t.o years because they feel that the child gets too familiar .ith the :uestions* So / .ent and had a different one done through a private psychologist and she came bac8 .ith a much higher score M #ichelleCs self-esteem had a real battering that year* She spent lots of time playing games on the computer, her behaviour .as really bad and her self-esteem .as so lo.* < #elissa

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/t is important that the methodologies used, and the language .ithin them, engage professionals in thin8ing about meaningful aspects of practice, including ho. their practice might be improved; Ae began using the language of Hfamily life at the centreC of intervention* Ae 8ept the term HinterventionC in there, and immediately staff .ere more engaged* +he discussions then became about family life and intervention, and .hat .ould an assessment loo8 li8e if family life < or the family < .ere at the centre of it* So you can still do fairly formal assessment, .ith :uestions that you as8 families before, during and after li8e, HHo. .ould .e see the best in your childDC, H/s this bringing out .hat your child can doDC, HAas that a good assessment of your childDC* +here are other :uestions < HAre .e not doing it right, .hat could .e do differentlyDC, .hich can be :uite challenging* < Service manager

Aor8ing to.ards service integration

#any families have more than one service provider, .hether from the same agency or different ones* (onsultations for these guides highlighted many familiesC e-periences of reduced service :uality, service gaps and contradictory information arising from a lac8 of service integration, including contradictory advice and unrealistic e-pectations from individual professionals; +herapists often say that itCs really .hat you do at home that matters, so there is usually Hhome.or8C to do .ith your child bet.een therapy sessions* +his means that sometimes there is speech therapy, physiotherapy and occupational therapy home.or8 to do* +he therapists are not necessarily a.are of everything else that you are dealing .ith at home < medications, bed-.etting, other appointments, let alone the needs of the rest of the family* And if youCre seeing them privately, then the speech therapist doesnCt 8no. .hat the physio has said < the only person .ho 8no.s it all is the parent* /t is usually the mother .ho has to process it all someho.* Sometimes you can do it .ell, and sometimes you >ust have a nervous brea8do.n* < Anita Professionals can significantly assist families by sharing information .ith each other, .ith the familyCs permission 6see $anCs story on page 2%7* (onsultations highlighted many e-amples of .here efforts to improve communication and coordination significantly improved service :uality and effectiveness* Ahen /Cve sat do.n .ith the team < the case.or8er, the parent, the other .or8ers < thatCs .here /Cve seen a little bit more progression .ith the child* /Cve seen strengths that .eCve been able to .or8 on because .eCre follo.ing up information thatCs not out of date* S.apping ideas .ith each other and the client* < Disability support .or8er /mproving service integration re:uires both s8ills and good processes* (hildren, young people, families and professionals all benefit .hen; everyone involved understands each otherCs roles, s8ills, area of e-pertise and practice approaches everyone 8no.s and is focused on the needs and priorities of the child, young person and family everyone 6including the family7 is 8ept up to date 6email, communication boo8s, case conferencing and regular telephone contact can all be helpful7 there are processes to resolve any problems*

/n some cases, coordination moves to the level of significant collaboration, especially .hen specialist disability or early childhood intervention services provide support to mainstream organisations to enhance service provision; 9uth goes a couple of days a .ee8 to a special school and a couple of days a .ee8 to a $e.ish school* +he coordination is brilliant* #eetings, emails, phone calls* Ahen 9uth first started at $e.ish school she .as a mess* She ran riot and the school had a hard time .ith her* +hen the teacher from 9uthCs special school came to the $e.ish school and tal8ed .ith the teacher about the issues and devised some strategies* / tell you .hat, they did this and they had a different child* +he $e.ish school .ill do anything* +hey really .ant 9uth* < Deborah Sometimes such partnerships develop even further, to.ards a high degree of service integration;

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A lot of parents .ant that choice of their child attending a mainstream educational setting, but you get a lot of resistance from schools .ho donCt feel that they can do it* Ae set up a classroom in a mainstream school* Ae put our staff into it, and our 8ids, and they .ould go there three days a .ee8* A lot of those 8ids have no. learned the s8ills for being in mainstream school < this is .hat you do .hen the bell goes, this is .here you put your bag < and have no. >umped off, into the mainstream setting, some at that school, some else.here* < Service manager #ost professionals are at times called to .or8 in collaboration .ith others .ho come from a very different perspective or discipline, including those that are less person or family centred* +his can be challenging for everyone, yet .hatever support family-centred professionals can offer to improve communication, coordination and integration .ith other services .ill be beneficial to children, young people and families* #y challenge is to .or8 .ith other agencies that donCt see family-centred practice as being central to their .or8* #any agencies .e .or8 .ith .or8 in isolation .ith the client, and donCt see the importance of .or8ing .ith the .hole family* +rying to educate them is a real challenge, .hether that is through a forum, or partnership and liaison, or case conferencing* /nvolving everyone and discussing the issues, delegating roles and responsibilities < time spent is the 8ey* < (ase manager

9eferring and using secondary consultation

Professionals need to 8no. ho. to refer appropriately to meet a variety of needs, including for ne. or different disability supports, or for information on diagnosis or medical treatment, including a second opinion* Practitioners also need to 8no. ho. to identify signs and ris8s of mental ill-health, suicide, drug and alcohol abuse, se-ual abuse and family violence, and ho. to refer in response to these and other needs, such as for diagnosis, counselling, family therapy, parenting programs or carers support, or for income, housing or legal support* +his re:uires an up-to-date 8no.ledge of the service sector andSor ready access to a good database of services and resources* /f a professional cannot meet a particular need, they need to offer alternatives .ithout ma8ing people feel Hfobbed offC* /t can be helpful if the professional can; be specific about the need they cannot meet and .hy discuss .hat services might meet the need, including the type of service, location and hours find and provide any information they have promised promptly 6lac8 of follo.-through by busy .or8ers is a common complaint from families7*

Professionals should also discuss .ith the family .hether the other agency is family centred, their e-pectations of support from the agency, and ho. they might engage .ith it* /f itCs possible for the professional to offer support, for e-ample, .ith referral, ongoing liaison, coordination or information sharing, discuss all these possibilities .ith the family, if necessary see8ing their formal permission* Professionals should establish ongoing relationships .ithin services they refer to, contact for secondary consultation or collaborate .ith for co-case management, planning or pro>ect .or8* +his might include (hild F/9S+ services, multicultural and Aboriginal organisations or those .ith e-pertise in "G0+/ issues*

Pull out 0o- - Personal perspective; $an, Sean, "achlan and "ouise
$an and Sean really appreciate it .hen the professionals in their daughter "ouiseCs life .or8 as a team, even if theyCre from different agencies* H,o one has really designed this team other than us,C $an says* H0ut if they can communicate .ith each other, thatCs good* So the paediatricianCs reports go to the psychologist and the GP and the speech therapist* +hat .ay theyCre all up to date .ith each other about .hatCs going on*C $an also values the capacity of professionals to thin8 about the familyCs future and H.hether they are copingC, and to 8no. the role of other services .ell enough to refer appropriately; HBur speech therapist, for e-ample, sent us to the psychologist for the /R tests and behavioural support, and also referred us to a paediatric neurologist* /tCs being able to loo8 at other needs, and 8no. .hat other service providers .ould do*C H+he best .or8ers .eCve ever had are those .ho can see the needs of the .hole family,C $an says* HIAhoJ can very much support the mother and father, and tal8 about issues that .ould be on their minds, and have empathy .ith

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the child, and the sibling* So the speech therapist, for e-ample, has helped .ith "ouiseCs speech and social s8ills but also tal8ed to us as parents about ho. to handle behavioural issues*C Another e-ample is the psychologist, .ho has helped "ouise 6.ho has an intellectual disability7 .or8 through her feelings about changing schools and supported the .hole family to .or8 through the issue together*

Self-care and maintaining appropriate boundaries

Self-care is a s8ill that many human service professionals pay too little attention to* Self-care practices are important for professionalsC occupational health and safety 6including their mental health7, as .ell as their capacity to .or8 .ell .ith children and young people .ith a disability and their families* Fseful self-care practices include; clinical supervision? debriefing after difficult or critical incidents? regular debriefing and chec8-ins .ith a supervisor? peer support? brea8s and holidays? and professional development* +here needs to be strong organisational support to enable staff to ta8e care of themselves, including appropriate agency policies, time and resources for debriefing and supervision 6.hich might include e-ternal clinical supervision7, strong management s8ills and a culture in .hich self-care is seen as an important contributor to occupational health and safety and service :uality* Bne important aspect of self-care is the establishment and maintenance of appropriate HboundariesC bet.een professionals and the children, young people and families they .or8 .ith* +his can be confusing for everyone involved, given that care and empathy are 8ey to building trusting, open and collaborative relationships* #any professionals .or8 in peopleCs homes and engage .ith intimate facets of their daily life; Sometimes / find it challenging to find my place .ith professional and personal boundaries* Nou .ant to give as much as you can personally, .ithout pulling do.n all your boundaries* Sometimes youCre .or8ing so closely in family-centred care, it can be difficult .hen the family has an issue youCve encountered in your personal life* +hrough debriefing /Cve discovered that itCs important not to let too much of yourself out* #aintaining my o.n personal and professional boundaries has helped me avoid burning out, and from getting too emotionally involved* < Disability support .or8er A caring professional can be an emotional lifeline in tough times, but they are not a friend or part of the family* Appropriate personal<professional boundaries are best set by organisations, and should be clearly communicated to staff and service users* Ahere those boundaries lie might vary bet.een organisations and communities* For e-ample, the reality for many rural and cultural communities is that people often 8no. or 8no. of each other; Ae have a lot of small communities in the area .e .or8, and / often have staff .ho live in those communities* /tCs for them to .or8 out that boundary, and maintain confidentiality, but / have an e-pectation, as their manager, that they .ill often find that tric8y* < Disability service manager /n Aboriginal organisations people are li8ely to be connected through diverse lines of 8inship, and different boundaries might apply* Personal<professional boundaries .ill also be influenced by cultural values around caring roles; Sometimes community sees a support .or8erCs role as blended* Nou become a friend? everything becomes intert.ined* Nou get invited to community events, parties* So the boundaries need to be very strong, and .ritten do.n* +here need to be guidelines for families to 8no. that the .or8er .or8s from nine to five, and this is the emergency contact person after five oCcloc8* < $ody Sa-ton-0arney, Victorian Aboriginal Disability ,et.or8 Ahatever boundaries suit a particular organisation and conte-t, if they appear to be shifting in an inappropriate direction in a particular professional<family relationship, the issue needs to be thoughtfully addressed in supervision*

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1 Family-centred organisations
Eey messages
Action on family-centred practice re:uires change at the level of the individual professional, .ithin the professions that feed into the sector, .ithin organisations, and .ithin the service system as a .hole* At every level this should be informed by consultation .ith and participation by people .ith a disability and families* Brganisations can support staff through professional development and orientation programs, in supervision, through reflective practice and other team-based learning approaches and through use of .ritten materials 6such as these guides7* Ho.ever agencies manage resource allocation and staffing, family-centred practice re:uires that staff have ade:uate time for meaningful partnerships .ith families, and .ith other services* 9ecruitment also offers the opportunity for building capacity in family-centred approaches* +here is a lin8 bet.een ho. organisations are operated and the :uality of partnerships bet.een family and staff using their services? this should reflect values li8e fle-ibility, openness, team.or8, respect, good communication and creation of a participatory, creative, collaborative and supportive culture* Agencies need to ensure their systems, policies and procedures are family centred, including staffing, record 8eeping, information sharing and complaints handling* +he approaches of reception, finance, communications and other staff should also be family centred, as should the physical environment* Brganisations should find .ays for families to direct their o.n supports, and for their vie.s to inform organisational and program development, and positive change at a broader level* Families can have input into organisations in many .ays, but these .ill only be effective if supported across the organisation* Services can increase service integration by encouraging staff to as8 families ho. they .ant their services to .or8 together, and .or8ing more collaboratively .ith their other service providers* Brganisations can come together to strengthen relationships, share learning, deepen 8no.ledge of each otherCs services and approaches, build each otherCs capacity, and .or8 to.ards more uniform, streamlined and coordinated approaches to service provision* #any Victorian professionals are committed to family-centred approaches in their .or8 .ith children and young people .ith a disability and their families* Net ho. effective any individual professional can be in increasing the family centredness of their practice .ill al.ays be limited .ithout support from their organisation and beyond* #a8ing the services and supports that children, young people and families receive more family centred re:uires managers and organisations to act on multiple levels; to nurture good practice among staff? to ma8e the organisation and its policies and procedures more family centred? to ensure agencies .or8 together to form an integrated service system from the perspective of families? and to contribute to thin8ing .ithin the relevant professions* At every level, action to strengthen family-centred practice should be informed by self-reflection, evidence and the diverse vie.s of children, young people and families themselves* As mentioned 6and discussed in chapter &!7, evidence indicates that participation by and feedbac8 from families is the touchstone for maintaining and improving practice*&&G Brganisations need to find meaningful .ays for families to direct their o.n supports, and for familiesC vie.s and needs to inform organisational and program development, as .ell as positive change at a broader level* #any agencies are finding innovative .ays to support change to.ards greater family centredness on all these levels, as is e-plored in some detail in the organisational guide in this suite* +hat guideCs 8ey messages are summarised belo.*

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+he barriers to change

9esearchers in )(/ and allied health have identified a number of barriers to increased family-centred practice&& including; lac8 of time, human and financial resources&&5 lac8 of support from the organisation to use family-centred approaches &&2 professionalsC lac8 of understanding and valuing of family-centred practices &&3 professionalsC lac8 of s8ills around collaboration and partnership .ith families &&1,&%! professionalsC un.illingness to reconcile .ith familiesC vie.s that differ from their o.n &%& pre-service training based on service models in .hich the professional is seen as e-pert &%% lac8 of information resources available to give families that account for social, cultural and language considerations and differing learning needs&%4 under-utilisation of families as a resource for sharing information, support and 8no.ledge &%G parents and caregiversC e-pectations 6perhaps based on advice from referring medical practitioners7 that support .ill be delivered e-clusively by therapists in therapeutic settings, rather than being integrated into their childCs natural environment and daily routines&% lac8 of s8ills in .or8ing cross-culturally, including deficit-based vie.s of (A"D families, cross-cultural misunderstandings related to the meanings of disability, and differing vie.s about the goals for people .ith a disability and the role of caregivers* &%5

Aithin early childhood education, a %!&! revie. of the literature cited challenges for practice, including; prior practices, attitudes and beliefs, especially among professionals .ho are Hnot used to considering families as e:ual partners in young childrenCs learning and developmentC that pre-service training needs to build 8no.ledge of the research and theory of family involvement in childrenCs education and include practical s8ills training for collaborating .ith families* &%2

/n a pro>ect to support increasing family centredness in childrenCs services in ,SA, Go.rie (hildrenCs Services identified barriers including; for staff; lac8 of training, inade:uate staff support, a youthful .or8force, staff turnover and attitudes for organisations; lac8 of time, lac8 of commitment from service operators, difficulties creating a familyfriendly environment and lac8 of childcare places*&%3

Aithin schools, research highlights the role of leadership as facilitating of 6or restricting7 family-centred practice, and the need for increased s8ills among both teachers and school leaders in .or8ing .ith parents 6the basics of family-centred practice7, and understanding parentsC roles in their childrenCs education* &%1

A frame.or8 for action

As .ith the family-centred practice model 6see page % 7, it is useful to have a frame.or8 for thin8ing about ho. to support action on family-centred practice beyond .hat individual professionals can do* +his guide uses one adapted from the ,#H9(Cs dimensions of cultural competency* &4! +he frame.or8 comprises four interrelated dimensions for action, informed by service-user participation at every level* Indi#idual < Eno.ledge, attitudes and behaviours defining family-centred practice are ma-imised and made more effective if they are .ithin a supportive organisation and .ider service system* /ndividual professionals feel supported to .or8 .ith children, young people and families to develop relevant, appropriate and sustainable services and supports 6see Figure %7* ro%ession < Family-centred practice is an important component in education and professional development* 9elevant sectors and professions develop standards and :uality frame.or8s that incorporate family-centred practice to guide professionalsC .or8ing lives*

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3rganisation < A culture is created .hen the s8ills and resources re:uired for family-centred practice are in place and are integral to core business* FamiliesC vie.s and needs inform development and planning and the design, implementation and revie. of programs* Ser#ice system < Policies and procedures for family-centred practice are effective .hen in place across all sectors and the .hole service system, and mechanisms and sufficient resources for fostering and monitoring family-centred practice are present at all other levels* Figure 2: Four interacti#e dimensions %or action on %amily-centred practice

Adapted from ,#H9( model

Supporting staff to be family centred

ro%essional de#elopment and orientation
Brganisations need to consider .hich aspects of family-centred practice can best be supported through professional development, considering both staff e-perience and prior training* Bne study found that professionals .ho had been in the .or8force for more than & years had most difficulty embedding familycentred principles into their practice*&4& #any professionals need support to better understand the relationship bet.een family-centred practice and their technical e-pertise* +his might be a particularly valuable focus in orientation programs for ne. staff, given the current lac8 of focus on family-centred approaches and related s8ills in many pre-service courses* Feedbac8 from service users should inform priorities for professional development* Brganisations should also consider ho. service users might directly inform or participate in professional development*

Super#ision
#anagers need to support family-centred practice through supervision* )specially in the conte-t of reorienting practice, supervision can be a useful forum for 8eeping staff focused on the basics and helping them better understand ho. to use their specialist s8ills .or8ing collaboratively .ith families; Family-centred practice is about understanding .hat is ma8ing the difference for that family* For some, that might be about respite, or being able to pay the bills and the rent* Nou have to 8eep having the conversations .ith .or8ers about that; loo8 at the feedbac8 that the family is giving < this is .hat is important to them right no.* /t is about understanding that there are many .ays .e can ma8e a difference that are much broader than >ust providing discipline-specific support* < +eam leader

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Family-centred practice re:uires support from managers if staff are to be fle-ible in their delivery of services and supports to families, .ithout going outside their role, service parameters or .or8ing conditions* /tCs important to ensure families donCt feel HcaughtC bet.een staff .anting to respond in one .ay to an e-pressed need and their supervisor .ho has a different vie.* Deeper engagement .ith families may mean that staff need to deal .ith a greater range of issues for families* Support for building their s8ills, resources and 8no.ledge to do so may come from supervision or colleagues* #any staff are also li8ely to value support .ithin supervision regarding maintaining appropriate personal<professional boundaries* +his, along .ith debriefing as needed about difficult or critical incidents 6sometimes re:uiring e-ternal supervision7, can assist .ith staff self-care and prevent burnout*

8e%lecti#e practice$ team-"ased approac!es and using /ritten materials

Some organisations maintain and improve family-centred practice using team-based learning* +his might be as simple as regular team meeting agenda items focused on H.hat / am doing that is family centredC, reflective practice or practice development sessions, Hshado.ingC e-perienced colleagues, or video-assisted reflection in .hich a professional revie.s a video recording of their interaction .ith a family, .hether alone or .ith their supervisor or team* A %!! >oint (anadian<0ritish study&4% investigated the impacts of a set of family-centred service fact sheets on professionals, students and families, confirming that such tools most effectively contributed to practice change .hen they provided support for ne. 8no.ledge through interactive and interpersonal strategies, including problem-based learning, interactive .or8shops and educational outreach visits 6for students7* &44 Brganisations might consider using the guides in this suite to support professional development, reflective practice, team discussion and practice-based learning* Ailson and DunstCs amily!centred practices checklist&4G .as developed for use primarily in supervision 6although it might also be used to support team discussion7 focusing on relational and participatory practices* #anagers might consider e-panding the tool to cover relevant technical s8ills and 8no.ledge in line .ith staff 8ey performance indicators*

Ahole-of-organisation approaches
A number of researchers ma8e a lin8 bet.een the .ay organisations operate and the :uality of partnerships bet.een staff and families using their services; /f program personnel truly believe in collaboration and .or8ing .ith families, their behaviours as administrators, individuals, and team members, and the manner in .hich their programs are organised and operated, .ill send a message that reflects these basic principles* +his belief .ill be translated in the characteristics of the personnel .ho are hired and in the support and respect that administrators give their staff, all of .hich affect the individual relationship established .ith each family* &4 #anagers and governance bodies .anting to strengthen family-centred approaches in their organisation must ensure the core values of family-centred practice inform their agencyCs values, including its mission or values statements* #ore broadly, they need to lead the creation of an organisational culture that; values, supports, resources and monitors family-centred practice? is open to ne. ideas and learning? and supports the meaningful participation of families at every level, from directing their o.n supports to having input into organisational planning, programs, evaluation, communications and pro>ect .or8* +he organisational guide contains more discussion about the role of leadership*

Ser#ice de#elopment
#anagers need to consider family-centred practice in resource allocation, although it .ill al.ays be one of many competing demands on e-isting resources* Family-centred approaches can sometimes re:uire staff to 8no. more, consult more, reflect more and do things differently* +his might have implications for the amount of time staff need to spend .ith families, .hat they do .hen they are .ith them, or even .ho they .or8 .ith .ithin the family 6for e-ample, respite .or8ers providing care for siblings7* +here are many approaches to structuring organisations and allocating resources to ensure there are the

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resources, s8ills, 8no.ledge and capacity in place to provide high-:uality services and encourage an integrated approach to their delivery* Ho.ever an agency resolves these :uestions, family-centred practice re:uires that staff have the time and capacity for meaningful partnerships .ith children and young people .ith a disability and their families in planning, delivering and revie.ing supports and services* Staff also need the time and capacity to build collaborative partnerships .ith other professionals and organisations* Bther 8ey resources include; a good-:uality database of services and resources? professional development? >ournals and other practice resources? and family-informed tools and methodologies* +raining and support for current staff are critical to improving practice, but recruitment also offers opportunities to build capacity in family-centred approaches and s8ills, as discussed in the organisational guide* Brganisations .ishing to build capacity in cultural responsiveness should also consider employing staff from diverse cultural bac8grounds, especially from communities in their catchment* Appropriately :ualified and trained bilingual staff can add to an organisationCs capacity to offer linguistically and culturally relevant services and support*

,anagement practices
As mentioned, +im #oore and others point to commonalities in positive, effective relationships bet.een managers and staff, as .ell as bet.een professionals and families, and suggest that one influences the other*&45 9elevant values and behaviours that underpin family-centred practice include fle-ibility, openness, team.or8, respect, good communication and creation of a participatory, creative, collaborative and supportive culture* Aor8ing conditions should also be family friendly? fle-ible .or8ing hours that accommodate staff family responsibilities can add to agency capacity to meet service usersC needs* &42 Bne manager in the Victorian sector has ta8en a systematic approach to deepening family-centred practice .ithin her organisation* A .or8ing group of interested staff has driven the pro>ect over a &%-month period, .hich incorporates a formal Hbuddy systemC* +hree-monthly report-bac8 sessions are held in small groups or .ith the larger team, depending on staff preferences* +he consultative, Hbottom-upC and evidence-based aspects of this approach have been 8ey to its success; /t .as really o.ned and driven by people on the team* /Cve seen the development of some fantastic tools* +hereCs a lot of conversation and debate, and / have definitely seen some shifts in thin8ing and practice* /tCs a big >ourney, and it ta8es time* 0ut itCs because itCs come from .ithin the group that .eCre going to get better traction, better ta8e-up* < Service manager

Systems$ policies and procedures

Families can sometimes e-perience frustration .ith organisational systems, policies and procedures that seem less than family centred* +he organisational guide lists some of the many positive approaches that Victorian services are ta8ing to improve systems, policies and procedures including; rostering and hand-over systems that facilitate continuity of care? transparent record 8eeping and tools for information sharing? strengths-focused assessment templates? organisational partnerships that facilitate collaboration and integrated support? and clear policies and procedures around responding to suggestions, concerns and complaints raised by service users* As discussed earlier, for the most part, families e-perience a service primarily through their relationships .ith one or more of the professionals from that service* Ho.ever, the s8ills and approaches of other staff 6reception, administration, finance, policy, communications and fundraising7 .ill also affect their e-perience of service provision, as .ill other aspects of organisational practice* 9esearch evidence supports the value of creating a family-centred culture across an organisation* &43 Positive approaches among Victorian services include; .aitlist management and offering of alternative supports; an Hopen doorC? a .elcoming and accessible physical environment? regular family events? and regular, high-:uality communication .ith service users*

Family participation in organisations

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9esearch confirms the value of service-user participation in helping services become more responsive to the needs of service users and the community*&41 +here are many .ays that both families and people .ith a disability can participate in organisations beyond directing their o.n supports* Bffering multiple .ays to get involved increases the li8elihood that more service users 6and more diverse service users7 .ill do so? the organisational guide discusses a .ide range of options for family participation* Service-user participation is only effective if .ell understood and supported at all levels of the organisation* +he follo.ing issues relating to effective participation are adapted from evidence-based summary guidelines in a 8ey Australian resource guide to improving services through consumer participation; &G! #eaningful participation by families means that organisations must be prepared to change* +he capacity of an organisation to increase family participation might need developing, .hich could re:uire both training and structural change* /nformation sharing is crucial at all levels of participation, from service users to board members* Participation means providing many .ays for families to Hspea8C to organisations and organisations listening actively to .hat families say* /ncreased family participation might mean that conflicts emerge* Ahen organisations recognise and manage these .ell, it can lead to better :uality service in the medium to long term* /ncreasing family participation is about relationships and the s8ills and behaviours that help build them* Partnership .ith families is based on dialogue and trust* +rust is built through openness and consistency* #ultiple strategies are essential for engaging diverse families and dealing .ith diverse issues* Families need to be engaged early, even in the process of deciding ho. best to engage them better* Brganisations should ta8e care not to promise .hat cannot be delivered, and be clear about their capacity to inform family involvement and respond to family concerns*

A family-centred service system

A number of studies identify the importance of providing coordinated and comprehensive care, &G&,&G% including coordination of service providers from different disciplines and different locations* &G4 As soon as you manage to get one form of help, everything else falls off underneath it* /tCs not one individualCs fault* /tCs the system* ,obody tal8s to each other* +hey all have their o.n teams, and nobody seems to understand .hat the others do, or the decisions they ma8e, or the impact they have* < Eate As discussed, professionals need to do .hat they can to improve communication and coordination .ith other services providing support to a child or young person .ith a disability and their family* Ho.ever, many aspects of improving service coordination lie in the hands of organisations* #any of the developments that enhance service integration and family centredness occur at the level of policy and funding, rather than .ithin or bet.een organisations* #anagers and governance bodies need to contribute to these as appropriate, for e-ample, by contributing to sector consultations and supporting their service users to contribute to community consultation processes* +here are many .ays that professionals and services can 6and do7 .or8 to increase service integration from the familyCs point of vie.* Systems, policies and procedures .ithin an agency can encourage staff to as8 families .hat services they are using, and ho. they .ant their service providers to .or8 together* (ommunication and coordination .ith a familyCs other service providers 6.ith the familyCs permission and participation7 can be formalised* Secondary consultation or partnerships in supported referral build relationships bet.een services and provide integrated support to a family* Brganisations can come together to strengthen relationships, share learning, deepen 8no.ledge of each otherCs services and approaches, build each otherCs capacity, and .or8 to.ards more uniform, streamlined and coordinated approaches to service provision < refer to the organisational guide for more discussion*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ 22

+he VicHealth partnership continuum&GG defines four levels of partnership based on increasing degrees of commitment, and on .illingness to change and share HturfC; net.or8ing, coordinating, cooperating and collaborating* #ost partnerships .ithin the service system for children and young people .ith a disability and their families < li8e partnerships in human services generally < are at the net.or8ing and sometimes coordinating end of the spectrum* /n many conte-ts this is appropriate* /n others families .ill very much benefit from .or8 by managers and governance bodies to establish or move partnerships further along the spectrum* As discussed in chapter %, partnerships are particularly important to increasing capacity in cultural responsiveness*

(reating more family-centred professions

As mentioned in chapter 3, a number of studies have identified that a significant barrier to family-centred practice in some sectors is that many professionals .ere Htrained in models, such as the medical model, in .hich the service provider .as seen as the e-pertC*&G Bne Australian study, focused on professional issues for physiotherapists, found that Hmoving to.ards a family-centred focus creates significant challenges for more traditionally trained physiotherapists in the .ay they gain and utilise information from patients and family membersC*&G5 +herefore, some professionalsC pre-service training might not have emphasised 6or perhaps even addressed7 family-centred approaches to core s8ills and competencies* As evidence gro.s of the efficacy of family-centred practice in various settings, this is li8ely to change* /ndeed, changes in approach to practice in )(/ led to the development, in %!!1, of a set of competencies for professionals in that sector that place family-centred approaches s:uarely at the centre of practice* &G2 #anagers need to contribute themselves, and support their staff to contribute, to development in thin8ing around family-centred practice .ithin their profession and sector*

Family-centred organisations as learning organisations

#anagers and governance bodies need to find .ays of conceptualising, planning and supporting learning around family-centred approaches at an organisational level* +he notion of the Hlearning organisationC is one idea that recognises the importance of both individual and collective learning* &G3 /t regards learning as Hvaluable, continuous, and most effective .hen shared Iand seesJ every e-perience IasJ an opportunity to learnC*&G1 Bther characteristics of learning organisations are that they; foster dialogue, ma8ing it safe for people to share openly and ta8e ris8s? value learning approaches based on continuous improvement, such as reflective practice or action research? :uestion predetermined beliefs and assumptions? continuously interact .ith their environment? and have a systems focus, loo8ing at the .hole organisation and the relationships .ithin it*& ! /n many .ays the idea of learning organisations connects strongly .ith the notions, values and behaviours that underpin family-centred practice* Some conceptualisations of a learning organisation see it as led by management .hile others regard it as necessarily more collaborative and democratic* +he support of the organisationCs leadership .ill al.ays be crucial to ma8ing any change sustainable* Ho.ever, in the conte-t of family-centred practice, more collaborative approaches seem appropriate, especially .hen collaboration is e-tended beyond the staff to encompass meaningful participation by families and people .ith a disability*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ 23

&! #aintaining and improving practice

Eey messages
9esearch sho.s it can be challenging to implement and maintain commitment to all aspects of familycentred practice, and that there is a tendency to.ards Hprofessional driftC bac8 to more traditional approaches* Professionals and services need to engage in reflective practice and see8 regular feedbac8 from service users to maintain and improve family-centred practice* Professionals should both see8 feedbac8 from children and young people .ith a disability and their families during the course of their .or8, and ensure they have the opportunity to give regular anonymous feedbac8* #any tools have been developed for this purpose, focused on the relational and participatory aspects of family-centred practice* Services could adapt these to their conte-t and e-pand them to cover technical areas in line .ith staff 8ey performance indicators* +here is strong evidence of the effectiveness of reflective practice for improving practice and achieving ma-imal outcomes for children, young people and families* Professionals can underta8e this on their o.n, .ith peers, in supervision and in their teams* 9eflective practice has been lin8ed to action research and the need for critical reflection, .here practitioners :uestion their assumptions and ho. their values inform practice* /t is therefore strongly lin8ed to some of the basic elements of family-centred practice* Family-centred practice has informed .or8 in some sectors for %! years or more, and many professionals and agencies regard it as fundamental to their approach* As a philosophy it has driven significant change .ithin many organisations, including the development of 8ey .or8er and family coordinator roles, and multidisciplinary and transdisciplinary approaches* Ho.ever, evidence sho.s it can be challenging to both implement family-centred approaches and maintain commitment to all aspects of the approach* 9esearch has sho.n that many organisations and practitioners begin .ith a .illingness to be family centred, but find it difficult to maintain all aspects of the approach over time? a phenomenon 8no.n as Hprofessional driftC*& & Bther research suggests that a mismatch can arise bet.een the degree to .hich professionals think they are .or8ing in family-centred .ays and the e-periences of children, young people and families* For e-ample, a (anadian study of 4!1 early childhood services found that professionals felt they .ere doing .ell at communicating .ith parents, treating them as e-perts, considering family strengths, and providing a positive vie. of the future and ho. parents could help*& % Ho.ever, parents and caregivers in the study felt that professionals fell short in a number of 8ey .ays important for family-centred practice; in providing information in a variety of .ays; in involving families in decision ma8ing? in assisting families to ma8e decisions or receive e:ual services? in considering familiesC practical constraints? and in ma8ing families feel comfortable as8ing :uestions or raising concerns* A later American study also sho.ed that professionals rated the service they provided as more family centred than families did*& 4 /n this case, the most significant factor for both groups .as e-perience < ho. long the professional had been in practice and ho. long the family had been in the service system* Ahile Australian evidence on the consistency bet.een professionalsC reported practice and familiesC e-periences is lac8ing, see8ing feedbac8 from families H.al8s the tal8C of family-centred practice, and as such is valuable in its o.n right* As +reloar notes; Vigilance is needed to ensure that services remain responsive to familiesC needs* At the heart is the need to listen to all that families say and to meet their e-pressed needs as far as possible* +his re:uires consistent and ongoing evaluation of professional practice* /n this, too, it is essential that families be seen as partners*& G Professionals and services therefore need to both engage in reflective practice and see8 regular feedbac8 from service users to maintain and improve family-centred practice*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ 21

#onitoring and see8ing feedbac8

Professionals should see8 feedbac8 from children and young people .ith a disability and their families during the course of their .or8 and ensure they have the opportunity to give regular anonymous feedbac8 .ithout fearing it .ill affect the ongoing support provided to them* /n more than t.o decades of research into family-centred practice, many tools have been created to measure the family centredness of various aspects of services and supports* Professionals and agencies might loo8 at ho. these could be used to inform e-isting service user feedbac8 tools or adapted to their organisation and conte-t* For e-ample, Dunst and AilsonCs amily!centred practices checklist& is a tool for use primarily in supervision, focusing on implementation of relational and participatory practices* Services might .ant to give thought to e-panding the tool to cover relevant technical s8ills and 8no.ledge, in line .ith staff 8ey performance indicators* (arl Dunst has also produced sample tools for use .ith families that professionals could use to develop a set of :uestions for children, young people and services during revie. periods or at other times 6see the organisational guide7*& 5 Brganisations might also adapt them as a tool 6or set of tools7 for see8ing regular feedbac8 from children, young people and families* +he organisational guide includes further discussion of issues related to see8ing feedbac8 from children, young people and families, including the design of tools, implementation of surveys or focus groups, analysis of findings, using findings to inform practice change and dissemination of results to service users*

9eflective practice
During consultations for these guides professionals often highlighted the need for reflection to ensure adherence to family-centred approaches; Family-centred practice is about ta8ing a lead from the family, developing a rapport, going bac8 to constantly revie. that family support plan, to ensure that you havenCt gone off on your o.n little tangent < that you donCt thin8 youCve .al8ed in as the familyCs hero* +hat can happen too* Ahen you do develop the rapport, if every time you go in, the family says HNouCre fantasticC, it can be very easy to get distracted from the game plan* < )(/ professional (onsultations .ere seen by many participants as an all-too-rare opportunity to stop, share ideas and reflect on their practice* Some managers described using innovative approaches to support family-centred practice in their teams and organisations, but many reflected on the difficulty of finding time to do so; +here arenCt enough opportunities for staff to feed bac8 ho. they are .or8ing in a family-centred .ay, and to share that .ith each other* +hatCs something .e could introduce to team meetings, even if itCs >ust &! minutes ans.ering the :uestion, HAhat are you doing that demonstrates a family-centred approachDC People can learn so much from each other >ust by hearing those stories* < Service manager +here is strong evidence that professionals .ho regularly reflect on .hat they do, .hy they do it and ho. this ne. 8no.ledge can be used to improve their practice, achieve the best outcomes for children and families* & 2 +his suggests the need for reflective practice, and indeed its usefulness has been .idely accepted in human services in recent years* Net research reveals a lac8 of clarity among professionals about .hat reflective practice actually involves*& 3 )arly .or8 in reflective practice introduced the concepts of Hreflection in actionC 6thin8ing on your feet, .hich could also be lin8ed .ith Australian researcher +im #ooreCs concept of Hmindful practiceC & 1 in family-centred conte-ts7 and Hreflection on actionC 6thin8ing after the event7* /t has been described as Hrepeated cycles of e-amining practice, ad>usting practice and reflecting on it, before you try againC* &5! Professionals can engage in reflective practice on their o.n, .ith peers, in supervision and in team meetings* Pollard identified the follo.ing seven characteristics of reflective practice for early childhood professionals; &* an active focus on goals, ho. they might be addressed and their potential conse:uences

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ 3!

%* a commitment to a continuous cycle of monitoring practice, evaluating and revisiting it 4* a focus on informed >udgements about practice, based on evidence G* open-minded, responsive and inclusive attitudes * the capacity to reframe oneCs o.n practice in light of reflections and insights based on research 5* dialogue .ith other colleagues, in-house and .ith e-ternal net.or8s 2* the capacity to mediate and adapt from e-ternally developed frame.or8s, ma8ing informed >udgements and defending or challenging e-isting practice* &5& 9eflective practice has also been lin8ed to action research &5% and the need for critical reflection, .here practitioners :uestion their assumptions and ho. their values inform practice*

Fsing this suite of guides

A %!! >oint (anadian<0ritish study, Family-centred Service; #oving /deas into Practice,&54 says that the barriers to family-centred practice identified in the literature suggest the need for educational materials targeted at service providers, decision-ma8ers and students about 8ey ideas and implementation strategies*&5G +he authors cite evidence that such materials are most effective in raising a.areness &5 and increasing 8no.ledge&55 6a necessary precursor to behaviour change7, &52 rather than producing change directly* +hey investigated the impacts of a set of family-centred service fact sheets on professionals, students and families, confirming that they contributed most effectively to practice change by providing support for ne. 8no.ledge communicated through more interactive and interpersonal strategies, including problem-based learning, interactive .or8shops and educational outreach visits 6for students7* &53 Professionals and services should therefore consider using these guides to support professional development, reflective practice, team discussion and practice-based learning* +his guide provides a conceptual frame.or8 and discussion, along .ith many practice e-amples and family stories* +he sectorspecific guides provide further concrete ideas for practice in specific settings and detailed good practice scenarios 6including .ith Aboriginal and (A"D families7, .ith accompanying Hpractice pointsC colour-coded to the elements of the family-centred practice model* +he organisational guide e-plores reflective practice and other strategies for supporting practice change in more detail* +here are also many other resources available to support reflective practice and critical reflection* Australian early childhood researcher Glenda #c,aughton dra.s on both social theory and action research to suggest si- :uestions that professionals might use to create positive change; Ho. have / come to do things this .ayD Ho. have / come to understand things this .ayD Aho benefits from ho. / do and understand thisD Aho is silenced in ho. / do and understand thisD Ho. many other .ays are there to do and understand thisD Ahich of those .ays might lead to more e:uitable and fair .ays of doing and understanding thingsD

,e-t steps
+here is a .ealth of e-pertise, e-perience and commitment to .or8ing in family-centred .ays among Victorian professionals and services* /t can be hard for professionals to find the time to reflect and learn from each other and the families they .or8 .ith, but the evidence sho.s that it is .ell .orth.hile; Ae need to invest significant time in staff, and give them permission to have the time around moving their practice, and thin8ing about .hat that means* So often theyCre out, doing and doing and doing* 0ut .ithout the time to have that reflection, and thin8 about .hat theyCre doing, and share their e-periences, .eCre not going to get any.here* < Service manager

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ 3&

For those .anting to read further, the sector-specific practice guides in this suite provide many concrete tips and ideas for practice, including detailed good practice scenarios dra.n from the e-perience of professionals, young people .ith a disability and their families* +he organisational guide .ill be of interest to those .anting to e-plore ho. organisations can better support family-centred practice and bring families into every aspect of their processes and practices*

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ 3%

)ndnotes

Family-centred, person-centred; a guide for everyday practice and organisational change < F/,A" +)=+ 34

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Eing, GA, "a., #, Eing, S# and 9osenbaum, P" &113, HParentsC and service providersC perceptions of the familycentredness of childrenCs rehabilitation servicesC, 3hysical and 4ccupational 5herapy in 3ediatrics, vol* &3, no* &, pp* &< %!* #cAilliam, 9A, Snyder, P, Harbin, G", Porter, P and #unn, D %!!!, HProfessionalsC and familiesC perceptions of family-centred practices in infant-toddler servicesC, $arly $ducation and 6e#elopment, vol* &&, no* G, pp* &1< 43* +rivette, ( 6unpublished7 cited by Dunst, ( and #oore, +, HFamily-centred practiceC presentations at )(/A 6Victoria7 Seminar, &4 August %!&!, referenced in #oore, +, Family-centred practice presentation handout, vie.ed ,ovember %!&&, T...*eciavic*org*auSeventsSprofessionaldevelopment*htmlU* Ailson, "" and Dunst, ($ %!! , Checklist for assessing adherence to family!centered practices, CA7$tools" instruments and procedures for implementing early childhood and family support practices, vol* &, (enter for the Advanced Study of )-cellence in )arly (hildhood and Family Support Practices, Family, /nfant and Preschool Program, $* /verson 9iddle Developmental (enter, #organton, ,orth (arolina, vie.ed ,ovember %!&&, 8http"99w.fippcase.org9casetools9casetools:#ol1:no1.pdf;* Hollo, A %!!1, $arly childhood inter#ention practitioner competencies, )(/A 6Vic7 and Department of )ducation and )arly (hildhood Development 6D))(D7, #elbourne* D))(D %!!1, %ictorian early years learning and de#elopment framework, vie.ed ,ovember %!&&, T...*education*vic*gov*auSearlylearningSeyldfSdefault*htmU House of 9epresentatives Standing (ommittee on Family, (ommunity, Housing and Nouth %!!1, Who cares<'"report on the in=uiry into better support for carers, (ommon.ealth of Australia, pp* &34<&35? ,ational People .ith Disabilities and (arer (ouncil, %!!1, p* %%? and (ommon.ealth Department of Families and Housing, (ommunity Services and /ndigenous Affairs %!&!, 4ccasional 3aper no. +9" $ffecti#eness of indi#idual funding approaches for disability support, prepared by Social Policy 9esearch (entre and Disability Studies and 9esearch (entre, Fniversity of ,e. South Aales, cited in (ouncil of Australian Governments %!&&, &ational disability strategy, vie.ed ,ovember %!&&, T...*facs*gov*auSsaSdisabilitySprogservSgovtintSPagesSnds*asp-; (ouncil of Australian Governments %!&&, &ational 6isability 7trategy 6isability Act +,,6 6Vic7* Summers, $A, #ar:uis, $, #annan, H, +urnbull, AP, Fleming, E, Poston, D$, Aang, # and Eup@c8, E %!!2, H9elationship of perceived ade:uacy of services, family-professional partnerships, and family :uality of life in early childhood service programmesC, /nternational 0ournal of 6isability, 6e#elopment and $ducation, vol* G, no* 4, pp* 4&1< 443* 0ronfenbrenner, F and #orris, P %!!2, H+he bioecological model of human developmentC, in A Damon and 9# "erner 6)ds7, >andbook of child psychology, 5th edn, Ailey, ,e. Nor8, pp* 214<3%3* Dempsey, /, Eeen, D, Pennell, D, BV9eilly, $ and ,eilands, $ %!!1, HParent stress, parenting competence and family-centered support to young children .ith an intellectual or developmental disabilityC, ?esearch in 6e#elopmental 6isabilities, vol* 4!, pp* 3< 55* 0ruder, #0 and Dunst, ($ %!! , HPersonnel preparation in recommended early intervention practices; Degree of emphasis across disciplinesC, 5opics for $arly Childhood 7pecial $ducation, vol* % , no* &, pp* % <44* Dunstan, ) and Griffiths, S %!!3, HSensory strategies; practical support to empo.er familiesC, &ew @ealand 0ournal of 4ccupational 5herapy, vol* , no* &, pp* <&4* Department of Human Services %!!2, 3lanning for indi#iduals A a resource kit and implementation guide for disability ser#ice pro#iders, State Government of Victoria, #elbourne* D))(D %!&!, %ictorian early years learning and de#elopment framework e#idence paper A practice principle 1" amily!centred practice, vie.ed ,ovember %!&&, T...*vcaa*vic*edu*auSearlyyearsSevidence*htmlU* Department of )ducation, )mployment and Aor8place 9elations %!!3, amily school partnerships framework, vie.ed ,ovember %!&&, T...*familyschool*org*auSpdfSframe.or8*pdfU* #oore, + and "ar8in, H %!! , H(ore than my child)s disability<)" a comprehensi#e literature re#iew about family! centred practice and family eBperiences of early childhood inter#ention ser#ices, Scope Victoria "td* Dunst, ($, +rivette, (# and Hamby, DA %!!2, H#eta-analysis of family-centered help-giving practices researchC, (ental ?etardation and 6e#elopmental 6isabilities, vol* &4, pp* 42!<43!* Dempsey, /, Eeen, D, Pennell, D, BC9eilly, $ and ,eilands, $ %!!1, HParent stress, parenting competence and family-centered support to young children .ith an intellectual or developmental disabilityC, ?esearch in 6e#elopmental 6isabilities, vol* 4!, no* 4, pp* 3< 55* +rivette, (, Dunst, ($ and Hamby, DA %!&!, H/nfluences of family-systems intervention practices on parent<child interactions and child developmentC, 5opics in $arly Childhood 7pecial $ducation, vol* 4!, no* &, pp* 4<&1* D))(D %!&!, %ictorian early years learning and de#elopment framework e#idence paper A practice principle 1" family!centred practice, vie.ed ,ovember %!&&, T...*vcaa*vic*edu*auSearlyyearsSevidence*htmlU* #acgregor, 9 %!! and (ronin, D %!!3, cited in D))(D, 5he importance of family partnerships A e#idence, vie.ed ,ovember %!&&, 8...*education*vic*gov*auSaboutSdirectionsSfamiliesaspartnersSimportanceSevidence*htmU* %G Nap, E and )no8i, D &11 ? )pstein, $ %!! ? "eadbeater, ( and Aong, A %!&!? /@@o, (V, Aeissberg, 9P, Easpro., A$ and Fendrich, # &111? and Henderson, A and #app, E %!!%7, all cited in D))(D, 5he importance of family partnerships A evidence, vie.ed $uly %!&&, T...*education*vic*gov*auSaboutSdirectionsSfamiliesaspartnersSimportanceSevidence*htmU.

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Association for (hildren .ith a Disability %!&&, 1rowing together" a parents) guide to supporting siblings of children with a disability, A(D, #elbourne* Dodd, $, Saggers, S and Aildy, H %!!1, H(onstructing the HidealC family in family-centred practice; challenges for deliveryC, 6isability and 7ociety, vol* %G, no* %, pp* &24<&34* (ouncil of Australian Governments %!&&* (ouncil of Australian Governments %!&&* Fnited ,ations Con#ention on the ?ights of the Child, vie.ed ,ovember %!&&, T...*unicef*orgScrcSU* Sanderson, H, Acraman, ( and Short, A %!! , Csing person centred planning and approaches with children and their families, vie.ed ,ovember %!&&, Thelensandersonassociated*co*u8U* Australian 9esearch (entre in Se-, Health and Society 6A9(SHS7 %!!1, 7ummary of the findings of seB in Australia" the Australian study of health and relationships, "a +robe Fniversity, #elbourne* Department of Human Services %!!2* Sanderson et al* %!! * Victorian Health Promotion Foundation 6VicHealth7, Bnemda VicHealth Eoori Health Fnit 6+he Fniversity of #elbourne7, #c(aughey (entre; VicHealth (entre for the Promotion of #ental Health and (ommunity Aellbeing 6+he Fniversity of #elbourne7 and the Victorian ):ual Bpportunity and Human 9ights (ommission %!!1, .uilding on our strengths" a framework to reduce race!based discrimination and support cultural di#ersity in %ictoria" summary report, VicHealth* ,ational #edical and Health 9esearch (ouncil %!! , Cultural competency in health" a guide for policy, partnerships and participation, vie.ed ,ovember %!&&, T...*nhmrc*gov*auSWfilesWnhmrcSpublicationsU* Victorian Aboriginal (hild (are Agency 6VA((A7 %!!3, Aboriginal cultural competence framework, Department of Human Services, #elbourne* VA((A %!!3* VicHealth et al* %!!1* Australian 0ureau of Statistics, +,,6 Census. Department of Human Services %!&&, $nabling choice for Aboriginal people li#ing with disability, vie.ed ,ovember %!&&, T...*dhs*vic*gov*auSabout-the-departmentSdocuments-and-resourcesSreports-publicationsU* Department of Human Services %!&&* VicHealth et al* %!!1* VA((A %!!3* Department of Human Services %!&&* Australian 0ureau of Statistics %!!5, +,,D!,- &ational Aboriginal and 5orres 7trait /slander >ealth 7ur#ey, A0S, (anberra* Department of Human Services %!&&* Stopher, E and DCAntoine, H %!!1, Aboriginal people with a disability" uni=ue approaches to uni=ue issues, prepared for the Aestern Australian government, vie.ed ,ovember %!&&, T...*disability*.a*gov*auU* VA((A %!!3* VA((A %!!3* VA((A %!!3* +ong, ( and (ross, +" %!&!, Cross!cultural partnerships for child abuse pre#ention with &ati#e American communities, ,orth.est /ndian (hild Aelfare /nstitute, Portland, Bregon, cited in VA((A %!!3* VA((A %!!3* See both ,#H9( %!! , Cultural competency in health" a guide for policy, partnerships and participation, vie.ed ,ovember %!&&, T...*nhmrc*gov*auSWfilesWnhmrcSpublicationsU and Department of Human Services %!!G, Culturally and linguistically di#erse strategy, State Government of Victoria, #elbourne* Department of Human Services %!&&* ,#H9( %!! * Dunst, ($, +rivette, (# and Hamby, DA &11 , H#easuring the help-giving practices of human services program practitionersC, >uman ?elations, vol* G1, no* 5, pp* 3& <34 * Dinnebeil, " and 9ule, S &11G, HVariables that influence collaboration bet.een parents and service coordinatorsC, 0ournal of $arly /nter#ention, vol* &3, pp* 4G1<45&? Hedges and Gibbs %!! * Dinnebeil, " and 9ule, S &11G, HVariables that influence collaboration bet.een parents and service coordinatorsC, 0ournal of $arly /nter#ention, vol* &3, pp* 4G1<45&? Hedges and Gibbs %!! * #oore, + %!!5, HParallel processes; common features of effective parenting, human services, management and governmentC, in )(/A 6Victoria7 Annual (onference, vie.ed ,ovember %!&&, T...*eciavic*org*auU* Dunst, ($, 0oyd, E, +rivette, (# and Hamby, DA %!!%, HFamily-oriented program models and professional helping practicesC, amily ?elations, vol* &, no* 4, pp* %%&<%%1* Ailson, "" and Dunst, ($ %!! , Checklist for assessing adherence to family!centered practices, CA7$tools" instruments and procedures for implementing early childhood and family support practices, vie.ed ,ovember %!&&, Thttp;SS.*fippcase*orgScasetoolsScasetoolsWvol&Wno&*pdfU*

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Dunst, ($, 0oyd, E, +rivette, (# and Hamby, DA %!!%, HFamily-oriented program models and professional helping practicesC, amily ?elations, vol* &, no* 4, pp* %%&<%%1* #oore and "ar8in %!! * VA((A %!!3* VA((A %!!3* VicHealth et al* %!!1* #i8hailovich, E, #artin, S and "a.ton, S %!!&, H"esbian and gay parents; their e-periences of childrenVs health care in AustraliaC, /nternational 0ournal of 7eB and 1ender 7tudies, vol* 5, pp* &3&<&1&* #c,air, 9 %!!4, H"esbian health ine:ualities; a cultural minority issue for health professionalsC, (edical 0ournal of Australia, vol* &23, no* &%, pp* 5G4<5G * Ea@din, A), Siegel, + and 0ass, D &11%, H(ognitive-problem solving s8ills training and parent management training in the treatment of antisocial behavior in childrenC 0ournal of Consulting and Clinical 3sychology, vol* 5!, no* , pp* 244< G2, cited in Aade, (, #ildon, 9" and #atthe.s, $# %!!2, HService delivery to parents .ith an intellectual disability; family-centred or professionally centredDC, 0ournal of Applied ?esearch in /ntellectual 6isabilities, vol* %!, pp* 32<13* +ymchu8, A*, "a8in, ( and "uc8asson, 9 &111 H"ife at the margins; intellectual, demographic, economic, and social circumstances of adults .ith mild cognitive limitations in an increasingly comple- societyC, in A +ymchu8, ( "a8in and 9 "uc8asson 6)ds7, A forgotten generation" the status and challenges of adults with mild cogniti#e impairments in American society, Paul H 0roo8es, 0altimore, cited in Aade et al* %!!2* #c(onnell, D, "le.ellyn, G and Ferronato, " %!!%, HDisability and decision-ma8ing in Australian care proceedingsC, /nternational 0ournal of Eaw, 3olicy and the amily, vol*&5, no* %, pp* %2!<%11, cited in Aade et al* %!!2* Aade et al* %!!2* +urnbull, AP and +urnbull, H9 %!!!, amilies, professionals and eBceptionality" collaborating for empowerment, Gth edn, #errillSPrentice Hall, Fpper Saddle 9iver, ,e. $ersey* Guralnic8, #$ %!!5, FFamily influences on early development; integrating the science of normative development, ris8 and disability, and interventionC, in E #c(artney and D Phillips 6)ds7, >andbook of $arly Childhood 6e#elopment, 0lac8.ell, B-ford, pp* GG<5&* +urnbull and +urnbull %!!!* #oore and "ar8in %!! * #oore, + %!!2, 5he nature and role of relationships in early childhood inter#ention ser#ices, Second (onference of the /nternational Society on )arly /ntervention, Pagreb, (roatia, $une &G-&5, %!!2, vie.ed ,ovember %!&&, Tnetsvic*org*auSemplibrarySccchS+#W/S)/(onf!2W,atureWroleWrships*pdfU* Department of Human Services %!&!, $#ery child e#ery chance" best interests case practice model summary guide, State Government of Victoria, #elbourne* #cAilliam, 9A, +occi, " and Harbin, G" &113, HFamily-centred services; service providersC discourse and behaviourC, 5opics in $arly Childhood 7pecial $ducation, vol* &3, no* G, p* %!5* #oore, + %!!5, 3arallel processes" common features of effecti#e parenting, human ser#ices, management and go#ernment, )(/A 6Vic7 Annual (onference, vie.ed ,ovember %!&&, T...*eciavic*org*auU* Guralnic8 %!!5* Hollo, A %!!1, $arly childhood inter#ention practitioner competencies, )(/A 6Vic7 and Department of )ducation and )arly (hildhood Development 6D))(D7* "itchfield, 9 and #acDougall, ( %!!%, HProfessional issues for physiotherapists in family-centred and communitybased settingsC, Australian 0ournal of 3hysiotherapy, vol* G3, pp* &! <&&%* Eohn, A &111, 3unished by rewards" the trouble with gold stars, incenti#e plans, AGs, praise, and other bribes, Houghton #ifflin Harcourt, 0oston* 0andura, A 6)d*7 &11 , 7elf!efficacy in changing societies, (ambridge Fniversity Press, (ambridge* Hollo %!!1* Aorld Health Brgani@ation, 5he social determinants of health, vie.ed ,ovember %!&&, 8...*.ho*intSsocialWdeterminantsSenSU* VA((A %!!3* VA((A %!!3* Hollo, A %!!1 and Viscardis, " &113, H+he family-centred approach to providing servicesC, 3hysical H 4ccupational 5herapy in 3ediatrics, vol* &3, no* &, pp* G&< 4* Hollo %!!1? Viscardis &113* +rivette, Dunst and Hamby %!&!* 0andura, A 6)d*7 &11 , 7elf!efficacy in changing societies, (ambridge Fniversity Press, (ambridge* 0andura &11 * 0andura, A &11G, 7elf!efficacy, cited in 9amachandran, VS 6)d*7, &11G, $ncyclopedia of human beha#ior, vol* G, Academic Press, ,e. Nor8* 69eprinted in H Friedman 6)d*7 &113, $ncyclopedia of mental health, Academic Press, San Diego7* 0andura &11G* Eohn, A &111, 3unished by rewards" the trouble with gold stars, incenti#e plans, AGs, praise, and other bribes, Houghton #ifflin Harcourt, 0oston*

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(entre for Population Health Seminar, vie.ed ,ovember %!&&, T...*gcph*co*u8SassetsS!!!!S!4 4S$ennieWPopayWSummary*pdfU. #iller, 9 %!!2, Cumulati#e harm" a conceptual o#er#iew, Department of Human Services, #elbourne* For guidance about ma8ing a report to (hild Protection or referral to (hild F/9S+ see the follo.ing, vie.ed ,ovember %!&&, T...*dhs*vic*gov*auSfor-individualsSchild,-youth-and-family-servicesSchild-protectionU* Hollo %!!1* Guralnic8 %!!5* Hollo %!!1* Association for (hildren .ith a Disability %!&&* VicHealth %!! , ?esearch summary + ! 7ocial inclusion as a determinant of mental health H wellbeing, vie.ed ,ovember %!&&, TS...*vichealth*vic*gov*auSPublicationsSSocial-connection*asp-DpageX%U* #oore, + and "ar8in, H %!! * Schul@-Erohn, A and (ara, ) %!!!, HBccupational therapy in early intervention; applying concepts from infant mental healthC, American 0ournal of 4ccupational 5herapy, vol* G, no* , pp* !< G* "a., #, +eplic8y, 9, Eing, S, Eing, G, Eertoy, #, #oning, +, 9osenbaum, P and 0ur8e-Gaffney, $ %!! , HFamilycentred service; moving ideas into practiceC, Child" Care, >ealth H 6e#elopment, vol* 4&, no* 5, pp* 544<5G%, citing "a.lor, #( and #attingly, (F &113, H+he comple-ities embedded in family-centred careC, American 0ournal of 4ccupational 5herapy, vol* %, no* G, pp* % 1<%52? 0ruce, 0, "etourneau, ,, 9itchie, $, "aro:ue, S, Dennis, ( and )lliott, # %!!%, HA multisite study of health professionalsC perceptions and practices of family-centred careC, 0ournal of amily &ursing, vol* 3, pp* G!3<G%1* "itchfield and #acDougall %!!%* Hollo %!!1* Harris, S9 &11G, HParents and caregiversC perceptions of their childrenCs developmentC, 6e#elopmental (edicine and Child &eurology, vol* 45, pp* 1&3<1%4* Hollo %!!1* +rivette, ( 6unpublished7, cited by Dunst, ( and #oore, +, HFamily centred practiceC presentations at )(/A 6Victoria7 Seminar, &4 August %!&!, referenced in #oore, +, Family centred practice presentation handout, vie.ed ,ovember %!&&, T...*eciavic*org*auSeventsSprofessionaldevelopment*htmlU* #in8e, E and Scott, # &11 , HParent<professional relationships in early intervention; a :ualitative studyC, 5opics in $arly Childhood 7pecial $ducation, vol* & , pp* 44 <4 %? vol* 2? p* &3&? #urray, ($ and #andell, ## %!!1, HAdministratorsC understanding and use of family centred practicesC, 0ournal of $arly /nter#ention, vol* 4%, p* &2? and +urnbull, AP and +urnbull, H9 %!!!, H amilies, professionals and eBceptionality" collaborating for empowerment, Gth edn, #errillSPrentice Hall, Fpper Saddle 9iver, ,e. $ersey* Eing, S, Eertoy, #, Eing, G, Hurley, P, 9osenbaum, P and "a., # %!!!, Children with disabilities in 4ntario" a profile of children)s ser#ices. 3art +" 3erceptions about family!centred ser#ice deli#ery for children with disabilities, (an(hild (entre for (hildhood Disability 9esearch, Hamilton, Bntario? "itchfield, 9 and #acDougall, ( %!!%, HProfessional issues for physiotherapists in family-centred and community-based settingsC, Australian 0ournal of 3hysiotherapy, vol* G3, pp* &! <&&%* Eing et al* %!!!* 0aum, A( and #c#urray-Sch.ar@, P %!!G, HPreservice teachersC beliefs about family involvement; /mplications for teacher educationC, $arly Childhood $ducation 0ournal, vol* 4%, no* &, pp* 2<5&? Garshalis, $ and #c(onnell, S &114, H(omparison of family needs assessed by mothers, individual professionals, and interdisciplinary teamsC, 0ournal of $arly /nter#ention, vol* &2, pp* 45<G1? #c0ride, S, 0rotherson, #$, $oanning, H, Ahiddon, D and Demmitt, A &114, H/mplementation of family-centered services; perceptions of families and professionalsC, 0ournal of $arly /nter#ention, vol* &2, pp* G&G<G4!? #cAilliam, 9A, #a-.ell, E" and Sloper, E# &111, H0eyond KinvolvementL; Are elementary schools ready to be family-centeredDC, 7chool 3sychology ?e#iew, vol* %3, pp* 423<41G* Eing et al* %!!!? /versen, #D, Shimmel, $P, (iacera, S" and Prabha8ar, # %!!4, H(reating a family-centered approach to early intervention services; perceptions of parents and professionalsC, 3ediatric 3hysical 5herapy, vol* & , no* &, pp* %4<4&* 0uysse, V, Aesley, P, Eeyes, " and 0ailey, D0 &115, HAssessing the comfort @one of childcare teachers in serving young children .ith disabilitiesC, 0ournal of $arly /nter#ention, vol* %!, pp* &31<%!4? Dinnebeil, " and 9ule, S &11G, HVariables that influence collaboration bet.een parents and service coordinatorsC, 0ournal of $arly /nter#ention, vol* &3, pp* 4G1<45&? Hedges, H and Gibbs, ( %!! , HPreparation for teacher-parent partnerships; a practical e-perience .ith a familyC, 0ournal of $arly Childhood 5eacher $ducation, vol* %5, pp* && <&%5? $udge, S &112, HParental perceptions of help-giving practices and control appraisals in early intervention programsC, 5opics in $arly Childhood 7pecial $ducation, vol* &2, pp* G 2<G25? Dunst, ($ and +rivette, (# %!! , (easuring and e#aluating family support program =uality, Ainterberry Press, Ashville, ,(? Erauss, # &112, H+.o generations of family research in early interventionC in #$ Guralnic8 6)d*7, 5he effecti#eness of early inter#ention, Paul H 0roo8es, 0altimore, pp* 5&&<5%G* #in8e and Scott &11 * "a.lor, #( and #attingly, (F &113, H+he comple-ities embedded in family-centred careC, American 0ournal of 4ccupational 5herapy, vol* %, no* G, pp* % 1<%52? 0ruce, 0, "etourneau, ,, 9itchie, $, "aro:ue, S, Dennis, ( and

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Hedges and Gibbs %!! * #oore, + %!!5* "itchfield and #acDougall %!!%* "a., #, Hanna, S, Eing, G, Hurley, P, Eing, S, Eertoy, # and 9osenbaum, P %!!4, HFactors affecting family-centred service delivery for children .ith disabilitiesC, Child" Care, >ealth and 6e#elopment, vol* %1, no* , pp* 4 2<455* South Australian (ommunity Health 9esearch Fnit, Flinders Fniversity of South Australia* Department of Public Health and the Australia* Department of Health and Aged (are%!!!, /mpro#ing health ser#ices through consumer participation" a resource guide for organisations, (ommon.ealth Department of Health and Aged (are* South Australian (ommunity Health 9esearch Fnit et al* %!!!* Piring, P9, 0ra@d@iunas, D, (ooley, A(, Eastner, +A, Eummer, #), Gon@Yle@ de Pi>em, ", Ruint, 9D, 9uppert, )S and Sandler, AD &111, H(are coordination; integrating health and related systems of care for children .ith special health care needsC, 3ediatrics, vol* &!G, pp* 123<13&* "inde8e, "", "eonard, 0$, Presler, 0 and Gar.ic8, A %!!%, Family-centered care coordination for children .ith special needs across multiple settingsC, 0ournal of 3ediatric >ealth Care, vol* &5, no* 5, pp* %1!<%12* Shelton, +" and Stepane8, $ &11G, amily!centered care for children needing specialiIed health and de#elopmental ser#ices, 4rd edn, Association for the (are of (hildrenCs Health, 0ethesda, #D* Victorian Health Promotion Foundation 6VicHealth7, 3artnerships analysis tool, vie.ed ,ovember %!&&, T...*vichealth*vic*gov*auSPublicationsSVicHealth-General-PublicationsSPartnerships-Analysis-+ool*asp-U* "a. et al* %!! , citing "a.lor and #attingly &113 and 0ruce et al* %!!%* "itchfield and #acDougall %!!%* Hollo %!!1* Finger, # and 0rand, S0 &111, H+he concept of the Klearning organisationL applied to the transformation of the public sectorC, in # )asterby-Smith, " Arau>o and $ 0urgoyne 6)ds7, 4rganisational Eearning and the Eearning 4rganisation, Sage, "ondon* Eer8a, S &11 , 5he learning organisation" myths and realities, )9/( (learinghouse* Senge, P#, Eleiner, A and 9oberts, (, 9oss, 90 and Smith, 0$ &11G, 5he fifth discipline fieldbook" strategies and tools for building a learning organisation, Double Day, ,e. Nor8? Eer8a, S &11 ? Finger, # and 0rand, S0 &111? Gadamer, H-G, &121, 5ruth and (ethod, Sheed and Aard, "ondon? and Argyris, ( and SchZn, D &123, 4rganisational learning" a theory of action perspecti#e, Addison Aesley, 9eading, #ass*; cited in /nfed, 5he Eearning 4rganisation, vie.ed ,ovember %!&& T...*infed*orgSbiblioSlearning-organi@ation*htmU* +rivette, ( 6unpublished7 cited by Dunst and #oore, HFamily-centred practiceC presentations at )(/A 6Victoria7 Seminar, &4 August %!&!, referenced in #oore, +, Family centred practice presentation handout, vie.ed ,ovember %!&&, T...*eciavic*org*auSeventsSprofessionaldevelopment*htmlU* Eing et al* &113* #cAilliam et al* %!!!*

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+reloar, 9 %!!4, ?ecommended practices in family!centred early childhood inter#ention, )arly (hildhood /ntervention (oordination Program, Department of Ageing, Disability and Home (are, Sydney* Ailson and Dunst %!! * Dunst, ( %!&!, amily!centred practice handout, )(/A Seminar, &4 August %!&!, vie.ed ,ovember %!&&, T...*eciavic*org*auSeventsSprofessionaldevelopment*htmlU #ac,aughton, G %!! ? Sylva, E et al* %!!G? Sira>0latchford, / et al* 6%!!37? and 9aban, 0 et al* %!!2, all cited in D))(D 6%!&!7, %ictorian early years learning and de#elopment framework e#idence paper A practice principle 8" reflecti#e practice, vie.ed ,ovember %!&&, T...*vcaa*vic*edu*auSearlyyearsSevidence*htmlU* Einsella, ) %!!1 and Ghaye, A and Ghaye, E &113, cited in D))(D %!&!* #oore, + %!!2, 5he nature and role of relationships in early childhood inter#ention ser#ices, Second (onference of the /nternational Society on )arly /ntervention, Pagreb, (roatia, $une &G<&5, %!!2, vie.ed ,ovember %!&&, Tnetsvic*org*auSemplibrarySccchS+#W/S)/(onf!2W,atureWroleWrships*pdfU* Grus8a, #c"eod and 9eynolds %!! , cited in D))(D %!&!* Pollard, A %!!%, cited in D))(D %!&!* #c#ahon, + &111, H/s reflective practice synonymous .ith action researchDC, $ducational Action ?esearch, vol* 2, no* &, pp* &54<&51* "a., #, +eplic8y, 9, Eing, S, Eing, G, Eertoy, #, #oning, +, 9osenbaum, P and 0ur8e-Gaffney, $ %!! , HFamilycentred service; moving ideas into practiceC, Child" Care, >ealth H 6e#elopment, vol* 4&, no* 5, pp* 544<5G%* "a. et al* %!! * Grimsha., $#, +homas, 9), #ac"ennan, G, Fraser, (, 9amsay, (9, Vale, ", Ahitty, P, )ccles, #P, #ato.e, ", Shirran, ", Aensing, #, Di>8stra, 9 and Donaldson, ( %!!G, H)ffectiveness and efficiency of guideline dissemination and implementation strategiesC, >ealth 5echnology Assessment, vol* 3, pp* &<2%* 9ogers, )# &11 , 6iffusion of inno#ations, Gth edn, +he Free Press, ,e. Nor8, cited in "a., # et al* %!! * "a. et al* %!! * "a. et al* %!! *

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