Health and Social Care in the Community (2013) 21(3), 283–292
12015
Urban adolescents with intellectual disability and challenging behaviour: costs
and characteristics during transition to adult services
Diana A. Barron MBBS MRCPsych MSc1, Iris Molosankwe
and Angela Hassiotis MD FRCPsych PhD1
1
Research Department of Mental Health Sciences, University College London Medical School, London, UK and 2Health
Service and Population Research, Centre for the Economics of Mental Health, Institute of Psychiatry at King’s College
London, London, UK
Accepted for publication 31 October 2012
Correspondence
Diana A. Barron
Research Department of Mental
Health Sciences
University College London Medical
School
67-73 Riding House Street
London W1W 7EY, UK
E-mail: rejudra@ucl.ac.uk
What is known about this topic
• Children with intellectual disabili-
ties and challenging behaviour
incur costly care packages.
• There is limited evidence on the
outcomes relating to the transition
of service users from child orien-
tated to adult specialist services and
associated costs for young people
with complex needs, challenging
behaviour and intellectual
disabilities.
What this paper adds
• It provides a detailed account of the
high cost to services and informal
carers incurred by young people
with intellectual disabilities and
challenging behaviour.
• It adds impetus to the need to
evaluate care quality and outcomes
to aid commissioners, service users
and carers in choosing best value
provisions.
ª 2013 Blackwell Publishing Ltd
doi: 10.1111/hsc.
MSc
2
, Renee Romeo PhD
2
Abstract
Young persons with intellectual disabilities and challenging behaviour in
transition usually have complex needs, which may not be served well
within existing resources. In this article, we present a survey of all the
young people, between 16 and 18 years of age with intellectual disabilities
and challenging behaviour identified in one inner London borough. They
were in transition to adult services at the time of the study (between 2006
and 2008). The objective was to examine their socio-demographic and
clinical characteristics, pattern of service use and associated costs of care.
An assessment toolkit was devised to measure the mental and physical
health, challenging behaviour and service use of the sample. Instruments
within the toolkit included the Strengths and Difficulties Questionnaire,
challenging behaviour scale, Client Service Receipt Inventory (CSRI) and
socio-demographic data form. Twenty-seven individuals in transition to
adult services had challenging behaviour, 23 of whom had mental health
diagnoses and 18 of whom had physical diagnoses. Severity of
challenging behaviour did not correlate with cost of care. Informal care
accounted for the highest proportion of the total cost of care (66%) with
education being the second largest contributor at 22%. Evidence on transi-
tion outcomes for young people with complex needs and intellectual dis-
abilities and associated costs is lacking. This article illustrates some of the
relevant issues in this area. Further research is required to investigate
these aspects and guide commissioning of appropriate services.
Keywords: care packages, challenging behaviour, costs, economics,
intellectual disabilities, mental health, transition to adulthood
Introduction
Challenging behaviour in young persons with intellectual disabilities
The prevalence of challenging behaviour in children and young persons with
intellectual disabilities is estimated as ranging from 10% to 15% (Kiernan &
Qureshi 1993), which has been replicated in subsequent studies (Emerson et al.
2001; Holden & Gitlesen, 2006; Lowe et al., 2007). Challenging behaviours also
appear to persist in adulthood in a high proportion of individuals as shown
by a longitudinal study of 58 participants over 11 years (Totsika et al. 2008).
Challenging behaviour in this context refers to the definition provided by
Emerson (1995):
…behaviour of such intensity, frequency or duration that the physical safety
of the person or others is placed in serious jeopardy or behaviour which
283
D. A. Barron et al.
is likely to seriously limit or deny access to the use of
ordinary community facilities.
There is significant comorbidity of challenging behav-
iour and mental disorders; the latter shows significant
increase compared to rates in children and young per-
sons of normal ability. Emerson & Hatton (2007) in their
secondary analysis of the 1999 and 2004 Office for
National Statistics surveys of the mental health of British
children and adolescents showed that 37% of children
identified as having intellectual disability also had a
mental health diagnosis. Some more recent estimations
of prevalence of mental disorders in children and young
people with intellectual disabilities suggest a prevalence
of 50.7% (Hassiotis & Andrea Barron 2007) to 64.1%
(Nachshen, 2009) with at least one mental health diagno-
sis in comparison to 35.9% in those without intellectual
disability.
Policy and current services
The transition from child to adult services continues to
receive the attention of policy makers, health and social
care service providers. A recent UK Department of
Health guideline on transition planning (Department of
Health, 2006) aims to provide an evidence base for the
planned and managed handover of young persons to
adult services. In this article, young people with intellec-
tual disabilities (and neurological disorders) are identi-
fied as the least well served group in terms of available
services (Emerson et al. 2005, Department of Health,
2006). Conversely, their care and in particular the care of
the subgroup of children who also show challenging
behaviour, often commands the more expensive care
packages (Allen et al. 2007). Families and informal carers
have been reported as dissatisfied with the support and
services that they receive (McGill et al. 2006) despite
longstanding government rhetoric relating to the impor-
tance of the contribution of informal care (Department of
Health, 1989).
A scoping project of 205 individuals with intellectual
disabilities and complex needs identified young people
with challenging behaviour as more likely to be placed
out of area and to be in receipt of high cost care packages
(Hassiotis et al. 2008). To appropriately and effectively
provide for service users locally, service providers need
to consider the characteristics, service requirements and
associated costs of the emerging population of young
people as they transit into adulthood. Difficulties along
the transition pathway are well documented and relate
to the planning and management of the transition pro-
cess, which often results in low satisfaction of the transfer
of care (Andrea Barron & Hassiotis 2008, Abbott &
Heslop 2009). However, these are not unique to young
persons with intellectual disabilities but also in young
284
persons with mental health problems (Singh et al. 2010)
and challenging behaviour. The authors reported on the
process, outcomes and user and carer experience of tran-
sition from children’s to adult mental health services,
and poor associated experiences. LeMesurier et al. (2007)
provide an overview of these processes, outcomes and
user and carer experiences in their transition guide.
Costs of care
The average cost of care for children living with any dis-
ability is estimated at £171 per week for children sup-
ported in families and £696 per week for ‘looked after
children’ (Curtis 2007). For those young people accessing
Child and Adolescent Mental Health Services (CAMHS),
Green et al. (2007) showed that the cost of inpatient psy-
chiatric treatment is high (£24 000 for an average treat-
ment period of 116 days or £1448 per week). Families
were shown to bear additional costs of £1470 per admis-
sion due to loss of employment time and travel costs.
This represented a large portion of annual earnings for
many of the families.
There are a few studies that have examined the cost
of services or interventions for children with intellectual
disabilities (Romeo & Molosankwe 2010). Romeo &
Molosankwe (2010) found only seven studies in their
review of economic evidence in intellectual disabilities
which examined economic aspects of care for people
with intellectual disabilities. In this article, we report on
the findings of a survey of all young people with intellec-
tual disabilities who were identified as having challeng-
ing behaviour and in transition to adult services between
2006 and 2008 in one inner London borough. The survey
was undertaken as part of the service transition project
group, which identified that the planning of health care
(delivery and review) was fragmented for young people
in transition between children’s and adult health
services. The group’s objective was to ensure an effective
and coherent assessment of level of needs and transition
planning process for young people with disability. The
project group included representatives from commis-
sioning, social services and people with intellectual
disabilities mental health services.
This study represents one part of the project group’s
objectives. The main aim was to examine the socio-
demographic and clinical characteristics of the group of
young persons with challenging behaviour, their pattern
of service use and the associated costs of care. It is impor-
tant here to comment on the position of the researchers
in relation to the research topic and the participants and
the possible influence that these additional roles may
play in the design collection and analysis of the data.
Transition is a priority area for commissioners of services
and over time there has been a lot of interest not only
ª 2013 Blackwell Publishing Ltd

locally but also elsewhere in the United Kingdom in pro-
moting good practice but also in planning for current
and future service demand to people with intellectual
disabilities. Furthermore, the service users included in
the study were new to the service and thus previously
not known to the clinicians of the adult intellectual dis-
abilities service but part of the cohort known to social
workers who are mandated to record all young persons
with statements of special needs within local authorities.
Several of the young persons were already undergoing
suitability assessments at the time of their participation
in the project to confirm their eligibility for specialist
adult intellectual disability services.
Methods
Setting
The study took place in an inner London borough with
significant deprivation. The local community intellectual
disabilities service employs a full-time transition worker
whose role is to identify young people within children’s
services who may be suitable to receive specialist ser-
vices. In the United Kingdom, all children with state-
ments of special educational needs are reviewed
annually by the local education authority. From the 10th
year of education (i.e. from age 14 years) the purpose of
the annual review is to devise and modify the young per-
son’s transition plan promoting joint work between adult
services and Connexions. Connexions is an agency that
was created following the Learning and Skills Act 2000
(United Kingdom, 2000) and has the responsibility of car-
rying out assessments of young people’s educational and
training needs from year 11 (i.e. age 15 years) onwards.
The transition plan aims to be person-centred and to
assist the fulfillment of the young persons’ potential, hopes and
dreams (Department of Health, 2004). Recently, the format
of the connexions service has changed significantly in
that while Connexions still aims to address the transition
needs of 13–25 year olds with intellectual disabilities the
main focus is young people aged 13–18 years of average
intelligence. Local authorities have adopted other means
of making the service accessible to young people, for
example freephone, text and web-chat services. For those
with intellectual disabilities a Connexions personal advi-
ser linked to each special school is available for advice.
Ethics
Ethical approval was gained from the North London
Research Ethics Committee. Written consent was sought
where possible from both service users and their carers
using accessible format documentation according to local
good practice guidelines.
ª 2013 Blackwell Publishing Ltd
Transition: characteristics & cost in challenging behaviour
Participants
The sampling frame included all individuals between
the age of 16 and 18 years, who had an intellectual dis-
ability and challenging behaviour.
Potential participants and their families who had
been identified by the transition social worker and
agreed to be part of this service-based project were sub-
sequently contacted directly by one of the researchers
(DAB) and interviewed at their convenience either in
their home or the service office.
The level of intellectual disability was determined by
local service criteria recorded in the clinical notes of the
service users. These are defined as follows: (i) mild intel-
lectual disability: in need of supportive environment and
encouragement to be independent rather than active
assistance; (ii) moderate intellectual disability: in need of
assistance with personal care and mealtimes, as well as
active involvement around training programme ⁄ coping
with emotional and ⁄ or behavioural difficulties; (iii)
severe intellectual disability: in need of frequent inter-
vention and active support in terms of activities of daily
living and personal care.
Measures
A steering group that consisted of professionals from
clinical psychology, psychiatry and social services was
formed to oversee the survey and agree on the informa-
tion to be collected. The steering group, which also
included the transition social worker, met monthly to
refine the assessment toolkit and identify the sample.
The service as a whole showed a great deal of interest in
the project and its progress and outcomes. The toolkit
measured mental status, challenging behaviour and ser-
vice use and informal support by unpaid carers in the
previous 6 months. The following instruments were
included in the toolkit:
Strengths and Difficulties Questionnaire (SDQ)
The SDQ is a behavioural screening questionnaire, which
can be administered among children between the ages of
3 and 16 years (Goodman 1997). Different versions are
available for completion by children, their parents and
teachers each with 25 items measuring common mental
disorders of childhood. In this study, we used the one-
sided informant-rated version for parents or teachers of
4–16-year-olds’ version. The SDQ can be used to make
specific predictions for ‘conduct disorders’, ‘hyperactiv-
ity disorders’ and ‘emotional disorders’ as well as an
overall prediction for ‘any disorder’. The instrument pro-
vides better coverage of inattention, peer relationships
and prosocial behaviours in addition to focusing on the
individual strengths of the child as well as their difficul-
ties. It has been validated for use among children with
285
D. A. Barron et al.
intellectual disabilities (Emerson 2005; personal commu-
nication between DAB and Professor Goodman, 2007).
Mini PAS-ADD
The Mini PAS-ADD is an assessment schedule for psychi-
atric disorders in people with an intellectual disability
(Prosser et al. 1998). It is designed to be used by psychia-
trists and psychologists and uses informant data from
carers and ⁄ or support staff. The whole instrument
comprises 86 psychiatric symptoms and generates a series
of sub scores on: depression, anxiety and phobias, mania,
obsessive-compulsive disorder, psychosis, unspecified
disorder (including dementia) and pervasive develop-
mental disorder (autism). In this survey, the authors used
the items to ascertain the presence of psychosis, and to
screen for autism spectrum disorder (ASD).
Client Service Receipt Inventory (CSRI)
The CSRI is a tool for collecting service-related informa-
tion about people across demographic groups in a variety
of contexts (Beecham & Knapp 2001). The version used
in this study was adapted for use in this population. It
collects data on the use of health and social care services,
accommodation and living situations, income, employ-
ment and benefits in addition to carer data, such as hours
a carer spends caring for the service user directly and
time taken off work to support the service user. The
questionnaire was completed with the interviewer and
the recall period was the 6 months prior to the interview.
The data are then combined with unit cost estimates to
derive a package of care costs, specific to each individual
in the sample. It has been used to estimate costs of care
in individuals with an intellectual disability (Felce et al.
1998; Romeo et al. 2009, Strydom et al. 2010).
Challenging Behaviour Checklist
The challenging behaviour scale (CBS) was based on an
adapted version of the Challenging Behaviour Checklist
(Harris 1993). It has been used previously in another ser-
vice-based survey (Hassiotis et al. 2008). The instrument
divides challenging behaviours into their different types
and quantifies each behaviours’ severity and frequency,
which yields a score of between zero and 36 (0 = no chal-
lenging behaviour).
Additional socio-demographic data collected
included information on schools attended, date since first
statement of Special Educational Needs and physical
health diagnoses.
Statistical analysis
Data were collected and analysed using SPSS 14 for Win-
dows (IBM, NY, USA). Many of our variables were either
ordinal or continuous, some with skewed distributions
for which reason non-parametric statistical tests were
286
used in the analyses. Further to this, the sample size was
small which affected the analysis of cost data. The Mann–
Whitney U test was used to examine the effect of autism
diagnosis or other mental health diagnoses on severity of
challenging behaviour. The relationships between costs,
the total score for challenging behaviour and SDQ total
difficulty score was investigated using Spearman’s rank
order correlation.
Service use
Data on the use of health services and other formal care
resources and informal care were collected using an
adapted CSRI (Beecham & Knapp 2001). Self-reports of
inpatient admissions were verified against hospital
records. To estimate school attendance for young people
in transition with intellectual disabilities, we applied
absence rates for special educational needs (Department
of Children, Schools & Families 2009) to national school
attendance rates.
Costs
All unit costs were based on (or inflated to) 2009 prices.
Unit costs were obtained from a variety of sources. Edu-
cation costs and absence rates were obtained from per-
sonal communication and reports from the Department
of Children, Schools and Families (Department of Chil-
dren, Schools & Families 2009), whereas costs for pri-
mary and health care services were obtained from NHS
reference costs (Department of Health 2009a,b); the costs
of other community, health, social and voluntary care
services were taken from an annual unit cost publication
(Curtis 2007). Although family carers are not normally
paid for their services, we applied the unit cost of a pro-
fessional homecare worker in valuing informal care, with
the assumption that they would be needed in case the
family carer was not available. Service use data were
then combined with unit cost estimates to derive a pack-
age of care costs specific to each individual in the sample
consistent with economic studies in the field (Felce et al.
1998, Romeo et al. 2009, Strydom et al. 2010). An average
total cost for the sample was then derived.
Results
Participants
Fifty-nine young people aged 16 to 18 years were found
to be suitable for adult Community Intellectual Disability
Services, 36 of whom were identified as having challeng-
ing behaviours and were therefore invited to participate
in the survey. Twenty-seven young people and their fam-
ily carers agreed to take part. Of the nine who did not take
part in the survey, three individuals were found not to
ª 2013 Blackwell Publishing Ltd
 Transition: characteristics & cost in challenging behaviour

59 young people
idenƟfied as eligible
for adult community
intellectual disability services

23 young people 36
without challenging young people with
behaviour challenging behaviour

Non-parƟcipants 27 included in study

2 did not meet 3 did not have

eligibility criteria for 4 declined to take history of
community intellectual part in the study challenging behaviour
disability service at Ɵme of interview

Figure 1 Flow diagram of young people considered for the study.

have challenging behaviour when first contacted by DAB, Table 1 Participant characteristics (n = 27)
two were deemed not suitable to receive services due to
respectively Asperger syndrome and complex needs No (%)
without intellectual disabilities and four individuals Age in years – mean (range) 17 (16–18)
refused to participate (please see Figure 1 for details). Gender
Male 14 (52)
Service users Female 13 (48)
Degree of intellectual disability
Mild 11 (41)
Socio-demographic profile Moderate 11 (41)
The mean age of service users in the survey was Severe 5 (18)
Ethnicity
17.0 years (range 16–18) and 14 were men. Two thirds of White people 9 (33)
the sample had severe intellectual disability and the larg- Mixed race 7 (26)
est ethnic group were white people (n = 9). At the time Afro Caribbean 6 (22)
of the study, 88% were living at home either with their Asian 4 (15)
parents or foster carer. Five (two of whom were in foster Not Disclosed 1 (4)
Accommodation
homes) were living out of area (Table 1). Parental home 19 (70)
A total of 24 of people were in full-time education. For Foster care 2 (7)
11, this was provided within the Borough whereas an Specialist residential services* 5 (19)
additional 13 individuals accessed educational placement Supported Accommodation 1 (4)
within another London borough and four attended edu-
*Out of borough of origin.
cational placements outside the Greater London area.

Clinical profile Challenging behaviour

Overall, 18 were found to have at least one physical
health diagnosis. A total of 23 screened positive for men-
tal health difficulties in the SDQ, (mean total score 19.81
SD 6.86). The most prevalent diagnosis was emotional
disorders (eight individuals); six screened positive for
hyperactivity disorder and four screened positive for
conduct disorder.
Nine individuals screened positive for ASD. Three of
the total sample screened positive for psychosis, two of
whom also had comorbid ASD. Of the 10 individuals
with both or either, nine showed additional comorbid
conditions based on the SDQ.
The severity of challenging behaviour derived from the
Challenging Behaviour Checklist, ranged from 0 to 36
(mean = 16.8; SD = 11.1) with 15 individuals scoring 17
and above. The types of behaviours recorded were self-
injury, harm to others and destruction to property. Three
individuals scored zero on the CBS.
Eighteen of the 24 individuals showed two or more
types of challenging behaviours. Five individuals
included in the study reported no challenging behaviour
at the time of interview. In two of these cases, the chal-
lenging behaviour had resolved in recent months, in the
three remaining cases there was no evidence of any

ª 2013 Blackwell Publishing Ltd 287

D. A. Barron et al.

Table 2 Clinical diagnoses (n = 27) out-patient services, such as neurology, gynaecology,

urology, dental and psychotherapy. Seven visited acci-
No (%)
dent and emergency.
Physical health diagnosis
Any 18 (67) Community-based services
Epilepsy 10 (37) More than three quarters (n = 23) of the young people
Bowel disease 6 (22) had contact with a social worker. Almost two-thirds saw
Urogenital 6 (22) a dentist (n = 18), and 17 saw a speech and language
Vision 3 (11)
Hearing 2 (7)
therapist. Less than half of the sample received art,
Mobility 23 (85) drama or music therapy. Eleven were seen by a general
Mental health practitioner and 11 by ‘other’ community nurses. Ten
Any 23 (85) individuals had received care from physiotherapists,
Strengths and Difficulties Questionnaire hydro-therapists, community support workers and pae-
Emotional disorders 8 (30)
Hyperactivity disorder 6 (22)
diatrics. Services less frequently used included commu-
Conduct disorder 4 (14) nity psychiatric nurse, intellectual disability nurse and
Mini-PAS-ADD chiropodist.
Autistic disorder 9 (33) Seven service users were allocated home-care support
Psychosis 3 (11) ranging from an hour to 90 hours per week. This service
Challenging behaviour
Any 24 (89)
constituted the highest average weekly costs (£107) com-
>2 Challenging behaviours 18 (67) pared to other community-based services.
Self-injury 17 (63) All individuals accessed an average of five commu-
Harm to others 16 (59) nity services (2–12 professionals). There was no signifi-
Destruction to property 12 (44) cant correlation between challenging behaviour scores
and number of professionals involved nor was there any
correlation with case complexity as indicated by the total
history of challenging behaviour limiting access to the
of coexistent mental health and physical health diagno-
community. These two cases had severe and complex
ses. However, we found a significant correlation between
needs including severe Intellectual Disability and
number of community services accessed and severity of
required total nursing support (Table 2).
intellectual disability (Spearman’s r = 0.42, P = 0.05).
Almost all (n = 26) of the young people were
Link between challenging behaviour and mental health
involved in at least one type of daytime activity such as
A significant correlation was found between the total
social clubs (most frequently n = 13), followed by adult
scores on the SDQ and the CBS (Spearman r = 0.53,
education services (n = 5), with four young people
P = 0.001). This replicates the findings of other studies
accessing drop-in centres. Children also took part in
that young people with intellectual disability are likely to
other activities such as swimming, scouts, cinema, bowl-
experience increased number of mental health diagnoses
ing, cycling and horse riding. The costs associated with
(Einfeld et al. 2011). In their literature review of nine stud-
these activities are not reported.
ies, the authors found that the prevalence of mental health
Over two thirds (23) of the young people in the sam-
diagnoses in young people with intellectual disabilities
ple went to specialist schools. These ranged from main-
was between 30% and 50%; in this sample, the prevalence
stream secondary schools with special provision for the
appears higher with 85% screening positive for mental
performing and visual arts to those specialising in teach-
health diagnoses. We found a significant positive associa-
ing learners with a variety of intellectual difficulties and
tion between the presence of ASD and challenging behav-
those with profound and multiple needs. Four people
iour scores (Mann–Whitney U = 14.50, Z = 3.43, P =
were enrolled in residential and a further four in main-
0.001). The mean challenging behaviour score for those
stream schools. More young people in the sample
who screened positive for ASD was 27.3 (SD = 5.8) com-
attended a special needs day school rather than a resi-
pared with 11.6 (SD = 9.2) for those screening negative.
dential school. The average cost per week of educating
this sample in a residential school was higher (£1487)
Service use and cost
when compared to the average weekly cost of providing
education services in a specialist school (£456). None of
Hospital-based services the respondents received any inputs from employment
Over a 6-month period, six young people used at least services.
one hospital service, and one person had an inpatient We noted that only two young people had contact
stay of at least one night; six used a wide range of with the police for a prank call and for assistance

288 ª 2013 Blackwell Publishing Ltd

 Transition: characteristics & cost in challenging behaviour

required from the police following an outburst on a pub-
lic bus.
Those individuals with more severe challenging
behaviour scores were not shown to be in receipt of
higher cost care packages (Spearman’s r = )0.24,
P = 0.233) nor were those with more complex cases as
indicated by the total number of coexisting mental and
physical health diagnoses (Spearman’s r = 0.24,
P = 0.244). Level of intellectual disability was the only
clinical parameter linked to the cost of care (Spearman’s
r = 0.46, P = 0.018).
Table 3 shows total hospital and community care
costs in addition to weekly cost of daytime activities and
respite care, school attendance and educational place-
ment according to type and forensic contact and weekly
cost.
Informal ⁄ family care costs
The majority of main carers responding to the survey
were women (n = 24). Eleven carers described them-
selves as married or living with a partner. The majority
of carers were mothers (n = 19). Other carers included
fathers (n = 2) foster carer ⁄ legal guardians (n = 3), one
grandmother, and two were sisters of the service users.
Almost all young people in the sample (n = 26) had
an unpaid carer, who could potentially cost local authori-
ties on average £1554 per week to provide the same level
of care. The main carer spent on average 86 hours per
week caring for the service user. Three of the young peo-
ple had access to an average of 6 hours per week of addi-
tional care provided by friends and family.
The mean total cost of all services per week was
£2543 (or £10 172 per month). Sixty-six per cent of the

Table 3 Service costs (n = 27)

No. using (%) Mean weekly cost (£) (SD)

Daytime activities
Day centre 4 (15) 29.65 (94.23)
Social club 13 (48) 26.49 (40.89)
Drop-in centre 2 (7) 0.37 (1.44)
Adult education 5 (19) 30.84 (97.57)
Total daytime activity costs per week 87.35 (124.10)
Education*
Special needs day school 19 (70) 456.33 (0)
Residential schools 4 (15) 1486.33 (0)
Mainstream day school 4 (15) 129.00 (0)
Average total school costs per week 560.48 (410.54)
Hospital-based services
Inpatient services 1 (4) 9.74 (50.63)
Outpatient services 6 (22) 1.11 (2.68)
Accident and emergency 2 (7) 0.12 (0.42)
Total hospital-based services 10.97 (50.47)
Community-based services
General practitioner 11 (41) 2.04 (2.80)
Psychiatrist 8 (30) 9.34 (24.41)
Clinical psychologist 7 (26) 4.06 (10.47)
Community psychiatric nurse 1 (4) 0.45 (2.34)
Intellectual disability nurse 1 (4) 0.08 (0.39)
Other Community nurse 11 (41) 4.78 (10.31)
Speech and language therapist 17 (63) 32.68 (47.93)
Chiropodist 1 (4) 0.03 (0.17)
Occupational therapist 4 (15) 7.38 (19.27)
Alternative therapist 5 (19) 5.40 (12.97)
Art ⁄ drama ⁄ music therapist 12 (44) 7.62 (11.51)
Social worker 23 (85) 21.22 (48.09)
Advocate counsellor 6 (22) 1.79 (3.62)
Dentist 18 (67) 0.85 (0.70)
Optician 6 (22) 0.62 (1.26)
Home help ⁄ home care worker 7 (26) 107.01 (373.02)
Other community services 10 (37) 16.24 (53.60)
Average weekly cost of community-based services 221.14 (452.77)
Average weekly total service-based costs (hospital and community-based service) 232.10 (453.53)
Police 2 (7) 0.30 (1.14)

*The standard deviation is 0 for Schools as average cost estimates were used for the types of schools attended by the sample, thus
there would not be any variation around the cost estimates.

ª 2013 Blackwell Publishing Ltd 289

D. A. Barron et al.
costs were for informal care, whereas education accrued
almost a quarter (22%) of the total weekly cost.
Work
Seven of the carers were in any employment; the rest
were either housewives or unemployed. Twelve carers
reported that they had given up work in order to pro-
vide care for the young person.
Caring responsibilities
Twenty-two carers had additional caring roles either for
other children (n = 15), or elderly relatives (n = 5). Ten
carers reported that they obtained regular help in caring
for the young person from friends or relatives.
Discussion
Our results replicate the findings of other studies that
young people with intellectual disability and challenging
behaviour are at risk of increased mental health diagno-
ses. Further to this, specific diagnoses such as autism cor-
relate with higher challenging behaviour scores.
Those individuals with more severe challenging
behaviour scores were not shown to be in receipt of
higher cost care packages nor were those with more
complex cases as indicated by the total number of coexis-
ting mental and physical health diagnoses. Level of Intel-
lectual Disability was the only clinical parameter linked
to the cost of care, which supports the findings of Knapp
et al. (2005).
The majority of costs were for informal care which
claimed two thirds of cost followed by education, which
accounted for 22% of the weekly cost of care over all.
Individual’s access to services showed wide variation in
terms of number and type of services used. Of particular
note is the lack of access to community specialist nursing
and employment services.
Results in context
Education and employment
All our participants had access to education with 24 in
full-time education. This contrasts with national data for
16–18-year olds of whom almost 80% were accessing
education or adult learning during the study period of
2007 ⁄ 2008 (Statistical First Release, Participation in EET,
2009). The apparent increased access to education for our
study group is likely to be due to the enhanced transition
planning that young people with intellectual disabilities
receive which is further supported by UK legislation or
lesser opportunity for truancy in this group. Therefore, it
may be more informative to compare our group with
other vulnerable young people such as looked after
290
children. These are children who are cared for by the
state of whom 65% were accessing some form of educa-
tion or training in 2008.
Of particular note is the lack of access to employment
services. This is disappointing particularly given the gov-
ernment commitment to increasing access to employ-
ment for people with intellectual disabilities
(Department of Health 2009a,b). Only one participant
had been exposed to some form of work experience,
which had been organised by his carer. Post hoc discus-
sion of the cases with the transition worker indicated that
participants were accessing Connexions, but we cannot
explain why they did not identify the contact they had
had with this service as relating to employment. It is pos-
sible that many carers assumed that open market
employment was not an option for their children because
of the lack of available opportunities or because of their
child’s own difficulties. Moreover, employment may not
have been a personal priority during the study period
for some participants, who experienced acute exacerba-
tion or deterioration in challenging behaviour.
Service configuration
The range of community services accessed by the study
group is limited by the local service configuration. Of
particular note is the lack of access to specialist commu-
nity nurses trained in intellectual disabilities in our sam-
ple; only one individual reported such input. At the time
of the study, the local CAMHS-special needs did not
include a nurse thus qualified.
Challenging behaviour and its comorbidity with
other mental health disorders has been described previ-
ously. Clinicians must first identify possible physical
health and mental health issues that may precipitate
such behaviours and indeed consider wider environ-
mental and social factors that may contribute to the pre-
sentation of challenging behaviour. Clearly for such an
assessment to take place young service users must have
access to the full range of relevant professionals and spe-
cialist supports. However, there may be wide variation
in service provision across UK countries.
Cost of care
Our findings indicate, as anticipated, high care costs for
this group. The cost of informal care is double that of
other comparable groups such as those with dementia
where 33% of total estimated costs are attributable to
informal care (Wimo et al. 2010). As mentioned, there is
little data available to facilitate commissioners in the
process of providing for the group in transition into
adulthood. UK policy has recognised the burden borne
by close family in caring for a child with intellectual
disabilities by emphasising the need to support carers.
Moreover changes in the demographic of the caring
ª 2013 Blackwell Publishing Ltd

population may predict a decline in the availability of
the resource.
Strengths and limitations
To our knowledge, this is the first study to consider in
detail the cost of care for young people with intellectual
disability and challenging behaviour as they make their
transition into adulthood; as such, the article is an impor-
tant addition to the evidence base in this field where
there is increased emphasis placed on value for money
for service provision. The small study size is balanced by
a high response rate of 88% (32 of 36 of whom only 27
were eligible for the study). Further to this, data collec-
tion could have been effected by participant recall bias;
the research team therefore endeavoured to minimise
this, where possible, by comparing interview data with
clinical records. The sample was taken from an inner city
service and therefore can be seen to be limiting the gen-
eralisability of our findings to other settings.
The choice of clinical measures in this study was
influenced by a positive service view to use research-
based outcomes to find out how transition was being
managed and what could be learned. There is potential
for some criticism from service users and their carers
with regard to the relevance of our findings. For exam-
ple with regard to challenging behaviour measures, a
more meaningful approach to assessing severity may
have been to elaborate on the way that the challenging
behaviours restrict access to activities for the individual
both independently and with their family. Following
this study, further work was undertaken with service
users and carers to ascertain what aspects of transition
were thought by young people with intellectual dis-
abilities and their carers to be important for consider-
ation.
Conclusions and implications for practice, policy
and further research
Commissioners are increasingly likely to require value
for money of the transition pathways for young people
with intellectual disabilities in terms of measurable out-
comes. Traditional parameters such as educational
achievement show that young people in formal care set-
tings under-achieve in relation to their peers who remain
in their family homes (Department for Education 2010).
Other outcomes such as criminal activity, adverse life
events and substance misuse are more common among
those cared for outside their family environment. How-
ever, the benefits of informal care (Beyer et al. 2008), are
less well documented. Recent UK cross-government
strategy has encouraged the effort to increase the num-
bers of people with severe intellectual disabilities in
employment by 2025 (Department of Health, 2011).
ª 2013 Blackwell Publishing Ltd
Transition: characteristics & cost in challenging behaviour
Information on costs alone, although useful, does not
assist commissioners in best value or effective care deci-
sions. For that, they would require information on out-
comes associated with each type of care. The authors
hope that the increased policy emphasis on person-cen-
tred and responsible commissioning will lead to greater
focus in research on outcomes both for service users and
their carers.
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