The magazine for families with disabled children

and all those who work with them

Autumn 2009

The road to victory

How one family has been fighting to get
mobility benefits for disabled toddlers

All round wellness Child Trust Fund New Every Disabled

Keeping you and Extra payments for Child Matters report
your family healthy disabled children Highlighting NHS failings

Incorporating The Lady Hoare Trust

 Contents
Contact a Family
209-211 City Road, London EC1V 1JN
Tel: 020 7608 8700, Fax: 020 7608 8701
e-mail: info@cafamily.org.uk
Contact a Family Northern Ireland
The Bridge Community Centre, Railway Street
Lisburn BT28 1XP
Tel/Fax 028 9262 7552
e-mail: nireland.office@cafamily.org.uk
Contact a Family Scotland
Craigmillar Social Enterprise & Arts Centre
11/9 Harewood Road, Edinburgh EH16 4NT
Tel: 0131 659 2930
e-mail: scotland.office@cafamily.org.uk
Contact a Family Cymru
33-35 Cathedral Road, Cardiff CF11 9HB
Tel: 029 2039 6624, Fax: 029 2039 6625
e-mail: wales.office@cafamily.org.uk
Contact a Family Cornwall
Tel: 01209 821 485
e-mail: cornwall@cafamily.org.uk
Contact a Family North East England Region
The Dene Centre, Castle Farm Road
Newcastle upon Tyne NE3 1PH
Tel/Fax: 0191 213 6300
e-mail: northeast.office@cafamily.org.uk
Contact a Family North West England Region
6th Floor, St. James House
Pendleton Way, Salford M6 5FW
Tel: 0161 743 0700, Fax: 0161 743 0711
e-mail: northwest.office@cafamily.org.uk
Contact a Family West Midlands Region
Prospect Hall, 12 College Walk
Selly Oak, Birmingham B29 6LE
Contact a Family Ealing
Room 3, 1st Floor, St. Andrews Church Centre
Mount Park Road, London W5 2RS
Tel: 020 8810 8151
e-mail: ealing.office@cafamily.org.uk
Contact a Family Lambeth
Lambeth Accord, 4th Floor,
336 Brixton Road SW9 7AA
Tel: 020 7326 5270
e-mail: lambeth.office@cafamily.org.uk
Contact a Family Lewisham
1 Forman House, Frendsbury Road
London SE4 2LB
Tel: 020 7635 6333
Fax: 020 7732 8494
e-mail: lewisham.office@cafamily.org.uk
Contact a Family Southall
St. Georges Community Centre
8-12 Lancaster Road, Southall UB1 1NW
Tel: 020 8571 6381
Fax: 020 8571 6400
e-mail: southall.office@cafamily.org.uk
Contact a Family Southwark
54 Camberwell Road, London SE5 0EN
Tel: 020 7277 4436
Fax: 020 7703 6449
e-mail: southwark.office@cafamily.org.uk
Contact a Family Sutton and Merton
Hill House, St Hellier Community Association
Bishopsford Road, Morden SM4 6BL
Tel: 020 8640 5525
Fax: 020 8640 7799
e-mail: suttonmerton.office@cafamily.org.uk
Contact a Family Wandsworth
1 Siward Road, London SW17 0LA
Tel: 020 8947 5260
Fax: 020 8947 9506
e-mail: wandsworth.office@cafamily.org.uk
www.cafamily.org.uk
Helpline: 0808 808 3555
 Connected Autumn 2009
From our Chief Executive
Helping to shape change
Srabani Sen, Chief Executive at Contact a
4 “Keep us in 9 Child Trust 15 Brainwave
Family gives an update on what the Centre
mind Tam” Fund money programme
for Excellence and Outcomes, and the
From our Chief Executive
Commissioning Support Programme are
3 Srabani Sen: Helping to shape change
Contact a Family
doing to support our families
4 30th anniversary celebrations: Get out and about for our big day out I hope you are having a very happy with and for disabled children and their • make a positive contribution
summer and have been able to make families. But PCTs, local authorities and • achieve economic well-being.
4 “Keep us in mind Tam”: Sending a message to new commissioner
the most of the sunshine – when we children’s trusts have to ask for their
5 Fighting fuel poverty: Support our campaign have had it! help. If you are involved in influencing Tailor-made support will be available
5 Getting your views across: Feeding in on future of nursing and midwifery local services in England, you may want to help commissioners do a better job.
If you are one of the many parents to check out the work of C4EO, which Again, you might want to remind any
6 News in brief: Round up of latest Contact a Family news involved in trying to influence people you can do at their website, commissioners that you come into
7 Fundraising feats: Raising money for our vital work across the UK who plan local authority and primary Web: http://www.c4eo.org.uk/disability contact with about this programme.
care trust services for disabled children in
Support groups England, there are two things you might If you think it is useful, why not point Campaigning news across the UK
want to know more about. out the work of C4EO to your local Things are also very busy on the
8 Finding the right funding: Tips on raising money for your support group service commissioners and planners campaign front. In Scotland, For
Centre for Excellence and Outcomes and encourage them to bring in a sector Scotland’s Disabled Children are holding
Benefit news The first is the Centre for Excellence and specialist. a launch event as well as upping their
Outcomes. This organisation was set up campaigning efforts. In Wales, Disabled
9 Child Trust Fund payments: Extra money for disabled children
by central government to pull together One of the things on C4EO’s website is Children Matter Wales has been actively
in one place the evidence of what works a ‘community of practice’ where anyone involved in lobbying on wheelchairs
Other news to improve the lives of some of the can go on and post their views about and has been very successful at
10 The road to victory: Fighting to get mobility benefit for disabled toddlers most disadvantaged children in England. what works to improve the lives of and securing media coverage of the issues.
Disabled children are one of the groups services for disabled children and their In Northern Ireland, the Children
11 Disabled children and health: New report highlights NHS failings
that the Centre, often known as C4EO, families. Feel free to put something up with Disabilities Strategic Alliance has
12 Disabled children’s services national indicator: Progress update are looking at. C4EO has done some yourself. The more parents that get their produced a manifesto. In England, Every
initial work to collate all the data available views across the better. Disabled Child Matters has been actively
Healthy living and well being on disabled children and to look at trying to influence the main political
the academic research on three areas Commissioning Support Programme parties’ general election manifestos to
13 Focus on all round wellness: Introducing this edition’s theme in relation to disabled children: early Another thing you might be interested make sure that disabled children are a
13 MEND programme: Helping to get children fit and healthy years, providing positive experiences in if you are involved in influencing priority.
for disabled children, and ensuring that local service planners is the work of
14 Carrot and stick: How one parent gets her child moving
services meet the diverse needs of the Department of Health and the Summer celebrations
15 Brainwave: How one family have benefited from specialist centre disabled children. Department for Children, Schools And now the fun stuff! As you will
16 Staying healthy: Tips and resources for you and your family and Families, to improve the way that probably have picked up by now, this
16 Finding a little ‘me’ time: Making sure you look after yourself
“Why not point out services are commissioned. This is is our 30th anniversary year. All through
being done through the Commissioning the summer we are organising a series
the work of C4EO Support Programme. Services for of fun events to celebrate our birthday,
Resources disabled children is one of the first areas and I know that many of you are
18 Book review
to your local service they are looking at. You can find out getting involved. If you want to organise
more about this at Web: http://www. something yourself, we have developed
19 A day in the life: Find out more about our Volunteer Parent Representatives commissioners and commissioningsupport.org.uk/ a handy toolkit with some ideas of things
you could do. To find it visit our website
planners and encourage The Commissioning Support Programme or download the PDF at
Connected information
Edited by: Karin Beeler, Elaine Bennett, Natalie Ridgway and Yvonne McGahren them to bring in a aims, through better commissioning
of services, to improve outcomes for
Web: http://www.cafamily.org.uk/big_
day_out_toolkit.pdf
e-mail: library.team@cafamily.org.uk Design and layout by: Natalie Ridgway
Note: Although great care has been taken in the compilation and preparation of this magazine to
ensure accuracy, Contact a Family cannot take any responsibility for any errors or omissions.
sector specialist.” children under the five headings of Every
Child Matters: Whatever you get up to I wish you a
© Contact a Family 2009
C4EO have employed what they are happy summer.
Next issue: The Winter edition of Connected will be published in November. We are always
interested in stories, especially from parents. If you would like to contribute, please submit articles calling ‘sector specialists’ to help Primary • be healthy
of up to 750 words. e-mail: library.team@cafamily.org.uk The deadline is 14th October 2009. Care Trusts (PCTs), local authorities • stay safe Srabani Sen
and children’s trusts improve their work • enjoy and achieve
Connected Autumn 2009 
 Contact a Family – News Contact a Family – News

As part of Contact a Family’s 30th
birthday celebrations, we are holding
Big Day Out events this summer to
encourage families with disabled children
to get out and about and enjoy play and
leisure together.
Claire Pimm, Contact a Family’s Director
of Policy and Communications, said:
“Our latest research shows that the
opportunity to enjoy play and leisure
together for families with disabled
children is poor or unsatisfactory.
“The Big Day Out hopes to change
that and we would like to see as many
families as possible outdoors and taking
part in a picnic together, visiting a local
attraction, going to the beach or nearby
beauty spot or popping along to your
nearest cinema.”
Get out and about for
our Big Day Out
Celebrate our 30th anniversary using our
Big Day Out Toolkit
Contact a Family has developed a toolkit
to help families across the UK organise
a Big Day Out Picnic – a simple and
inexpensive way of enjoying play and
leisure time together as a family.
“We want to encourage
families with disabled
children to get out and
about and enjoy play
and leisure together.”
The toolkit includes hints and tips for
organising your Big Day Out Picnic
as well as games ideas for children
and adults to enjoy during the picnic,
delicious recipes and suggestions for
covering your costs and fundraising for
Contact a Family.
If you’d like to take part in the Big Day
Out and organise a picnic with friends
and families you can download the Big
Day Out toolkit from our website. Web:
http://www.cafamily.org.uk/big_day_out_
toolkit.pdf
Calling all families affected by fuel
poverty — support our campaign
Contact a Family is working with Consumer Focus to help families
with disabled children struggling to pay their fuel bills
Contact a Family is urging families
who spend 10 per cent or more of the
household income on electricity and
gas bills to get in touch and to tell us
your experiences. Your stories will help
us campaign to improve the situation for
many other families in the same position.
Claire Pimm, Director of Policy and
Communications, said: “We often hear
from families about the difficulties they
have paying for heating bills. There are
many conditions and disabilities which
worsen in the cold weather or require
electrical equipment for care. This means
families with disabled children are more
likely to live in fuel poverty and we want
the government to introduce measures
to help them.”
The campaign will be calling for all
families with disabled children to have
access to grants to insulate their homes
giving scheme to make
homes warmer, more
energy efficient and help
reduce bills. We believe
all families with disabled
children should be given
access to the scheme.
We will also be calling
for families with disabled
children on income
support to be given the
cheapest fuel rates from
energy suppliers. We would like to see evidence by 18th September. Tel: 020
social tariffs being opened up to all those 7608 8741 or e-mail: elaine.bennett@
in receipt of Cold Weather Payments cafamily.org.uk
including families with disabled children
on income support. Contact a Family has been involved in a
campaign to extend winter fuel payments
If you live in England, are spending more to families with disabled children. We will
than 10 per cent of your income on continue to press for the annual payment
fuel bills – electricity and gas combined to be extended to families with disabled
– and you own your home, please do children, while also working on this latest

“Keep us in mind Tam” and help reduce bills. At present, if a

Finola and Tam, with her painting
Contact a Family Scotland and
representatives of Scotland’s disabled
children delivered an important message
to the new Children’s Commissioner
recently.
Tam Baillie was appointed Scotland’s
Commissioner for Children and Young
People in May, taking over from Kathleen
Marshall. In July, Finola Forman, 17,
and Adam Bojelian, 9, visited Mr Baillie
with a welcoming card from Contact a
Family Scotland. The card – a painting
of Edinburgh Castle – was painted by
Finola, who has Cerebral Palsy. And inside
Scotland’s disabled children deliver
message to new Children’s Commissioner
the message “Keep us in mind Tam” was
signed by Contact a Family Scotland on
behalf of all disabled children in Scotland.
Ellenor Anwyl, Director of Contact a
Family Scotland, said: “We wanted to
extend a warm welcome to Scotland’s
new Commissioner for Children and
Young People on behalf of all the
disabled children of Scotland. We hope
that the new commissioner will continue
to represent the rights of all children,
including disabled children.
“There are around 70,000 disabled
children in Scotland. They and their
families want to lead ordinary lives. They
want the same opportunities and to
reach their full potential, so please keep
us in mind.”
The visiting party to the Children’s
Commissioner office also delivered a
framed copy of Finola’s painting for Mr
Baillie to hang in his office.
Adam with the card given to Tam
child is in receipt of Disability Living
Allowance, their household is not eligible
for Warm Front – a government grant-
Getting your views across
An update on how Contact a Family has been feeding into the
Commission on the Future of Nursing and Midwifery
Contact a Family regularly makes
comments and recommendations on
government legislation, policies and
other proposals that are relevant to
families with disabled children. Recently
we responded to the Prime Minister’s
Commission on the Future of Nursing
and Midwifery.
The commission was launched in March
this year and has been set up to ensure
that frontline nurses and midwives
have the skills to deliver 21st century
quality services. In July the Commission
get in touch. We are looking to speak to
families about their situation to provide
evidence for a report which will support
the campaign. We need to gather the
asked for our views. In particular they
wanted to hear what we would like to
see nurses and midwives doing more
of and/or doing differently in the future
– whether in people’s own homes, in the
community or in hospital.
Following feedback from families
we highlighted that all nurses and
midwives should listen to parents and
not dismiss their concerns, particularly
parents of children with rare disorders, or
undiagnosed syndromes.
campaign to ensure families are living
in the most energy-efficient homes and
are given the cheapest fuel rates from
energy suppliers.
We recommended that all nurses and
midwives receive disability awareness
equality training and are given help
to understand children’s behaviour
and communication needs to ensure
disabled children are not put at risk of
not receiving appropriate care. We also
wanted more nurses and midwives in
the future to be aware of the impact
of disability on the whole family and
provide information on who can help.
Watch this space for feedback on this!

 Connected Autumn 2009 Connected Autumn 2009 

 Contact a Family – News
Contact a Family news in brief
Parent participation in
action
Involving parent carers at all levels
of planning and developing services
is the best way of creating effective
and responsive services that work for
families. Thanks to the extremely hard
work of parents across the country,
the number of parents having a say
in local service provision has grown
significantly over the last six months,
with 89 per cent of local areas
reporting a rise in the number of
parents involved in participation work.
84 per cent of local areas say they
are reaching a wider range of parent
carers and 66 per cent of areas report
improved joint working with local
services. All the parents were working
to very strict deadlines, helped by
Contact a Family and Serco working as
Together for Disabled Children, so this
is a huge success.
The purpose of parents forums was
summed up by a parent member of a
Parent and Carers Forum at a recent
meeting in Barnsley: “To me it is
vitally important that Barnsley Parents
and Carers Forum (BPCF) is wholly
representative of those parents, carers,
individuals and groups who are not
represented, and is strong, not militant;
is determined, not dictatorial; is
responsive, not dismissive; and above
all will insist on change, not hide from
it.”
Web: http://www.togetherfdc.org
We want our missing
millions!
For Scotland’s Disabled Children
(FSDC) campaign, of which Contact a
Family Scotland is a founding member,
are currently campaigning to make
sure disabled children are treated as
a priority. Scotland got a new pot of
money when £34 million was made
available to pay for measures in the
Aiming High for Disabled Children
strategy for England. The expectation
was that this would be spent on
more and better services for disabled
children, young people and their
families. We’ve pushed for this to
happen and awkward questions about
the £34 million were asked at First
 Connected Autumn 2009
Minister’s Question Time.
Where is the £34million?
Where the £34 million has gone and
how it is being spent is a mystery we
want to solve. But we need your help to
do it!
How you can help find the missing
millions
Sign up as a supporter and we’ll tell you
when the campaign starts. We will also
give you campaign tools, like letters to
send to local councillors and MSPs.
Three ways to become a supporter of
FSDC
• write to us at FSDC Scotland,
FREEPOST, Contact a Family, Freepost
LON8801, London EC1B 1EE
• e-mail us at donna.tomlin@cafamily.
org.uk. Put ‘For Scotland’s Disabled
Children’ in the subject line and
in the message please put your
name, contact details and any other
information you want us to know at
this stage
• call Donna or Kate on Tel: 0131 659
2938 or 0131 659 2939
Disabled Children Matter
Wales highlight long delays in
wheelchair provision
Disabled Children Matter Wales
(DCMW), of which Contact a Family
Wales is a member has been voicing
its concerns about unacceptable delays
in Wales for providing wheelchairs for
disabled children and young people.
Two reports published in 2006 by
Barnardos Cymru and Contact a Family
Wales highlighted the difficulties
and delays disabled children and
their families were experiencing with
assessment, supply and maintenance
of wheelchairs, and there has been little
improvement since then.
Marion Parry, a parent of a disabled child
from Gwynedd said: “We had to battle
for two and a half years to get a chair for
our daughter and when it was eventually
delivered it was totally unsuitable”.
Recently DCMW held an event on this
matter at the Senedd, the National
Assembly for Wales, at which over 40
people attended, to coincide with a
Welsh Conservatives Debate being
held on wheelchair provision. DCMW
has urged ministers in Wales to ensure
no-one in Wales has to wait longer
than a year for a wheelchair.
More help for families in the
West Midlands
Contact a Family is extremely pleased
to announce that we’ve been
successful in securing funding for
our work with families in the West
Midlands. Our West Midlands office
covers the areas of Birmingham,
Coventry, Dudley, Herefordshire,
Sandwell, Shropshire, Solihull,
Staffordshire, Stoke on Trent, Telford
& the Wrekin, Walsall, Warwickshire,
Wolverhampton, and Worcestershire.
Funding from the Big Lottery Fund
will help us to support families with
disabled children in these areas over
the next three years. This means we
can employ a development officer
and information worker who can
provide information to families in the
West Midlands about all aspects of
raising a disabled child. We can also
support local parents to set up their
own support groups to help others by
sharing experiences and information.
Monitoring the Parent Know
How Directory
Contact a Family is monitoring the
development of the Parent Know
How Directory, which is an online
directory offering parents and those
working with them the ability to search
for information about childcare and
families services, in both their local
community and nationally. We’ll be
working to make sure this directory
is useful for families with disabled
children.
Annual audit of children’s
centres
Our children’s centre team is currently
conducting an annual audit of how
children’s centres are supporting
families with disabled children. If you
have any experiences you would
like to share please contact Una
Summerson, Tel: 020 7608742 or
e-mail: una.summerson@cafamily.org.
uk Fiona, Kaye and Judy after finishing
Fundraising feats for families
How our fundraising heroes have helped raise much needed cash
Throughout the summer, people from
across the UK have stepped up to the
Three Peaks Challenge
On Saturday 21st June five plucky
young ladies, Cassandra, Vanessa,
Alison, Karen and Emma, supported
by three expert drivers, took on the
challenge of climbing three of the UK’s
highest mountains, Ben Nevis, Scafell
Pike and Snowdon, in 24 hours.
To prepare, the girls had to undergo
a rigorous programme of training that
involved walking the South Downs on
freezing cold mornings and weekends
for up to eight hours. They had to
work hard as a team to maintain their
time, surviving on very little sleep and
relying on their drivers to get them
safely from mountain to mountain as
fast as possible.
They completed the challenge in the
magnificent time of 22 hours, 25
minutes — fantastic!
British London 10K Run
On Sunday 12th July, seven runners
pounded the streets of London to
raise funds for Contact a Family
and awareness of its work. Over
27,000 runners took part in this
popular event – the course started at
Hyde Park, ended in Whitehall, and
passed by Trafalgar Square, St Paul’s
Cathedral, Tower Bridge, the Houses of
Parliament and Big Ben.
Contact a Family – News
challenge to raise money for Contact
a Family. Run or climb, they have all
Commenting on the highs of their
experience the girls said: “completing
the challenge in less than 24 hours,
the stunning views on Snowdon, and
the first beer after finishing!”
And reliving the lows they said:
“struggling down Scafell Pike over wet
rocks, so much physical exercise on
limited sleep, and the 9-mile walk
back from Snowdon after finishing the
course!”
Emma decided to dedicate
her part in the challenge to
fundraise for Contact a Family
after reading an article on the
struggles faced by families
caring for a disabled child,
and being inspired by the
work of Contact a Family.
Emma’s already exceeded her
fundraising target of £500 and Emma, far right, with the rest of her team
is set to raise even more as during the Three Peaks Challenge
Our congratulations go to Fiona, Judy,
Kaye, Tilde, Eke, Elaine and Sean for
completing the course and flying the
flag for Contact a Family.
Eke and Tilde with their medals
helped to make a real difference for
families with disabled children.
her employer, BAA, will be supporting
her by sending us a cheque for £250.
Congratulations to all the team for
surviving this challenge and a huge
thank you Emma for selecting
Contact a Family.
If you’ve been inspired to attempt a
similar challenge either in the UK or
overseas, then please contact our
fundraising team.
London Marathon update
In the last edition of Connected we
published a fundraising target figure of
£80,000 for the 2009 Flora London
Marathon. We are delighted to report
that this figure has been exceeded,
currently standing at just over £81,212
and is set to rise even more. What a
wonderful result!
Upcoming runs
Contact a Family has places available
for The Santa 5K Run (Santa costume
provided) on Sunday 6th December
in Greenwich Park. We are seeking
30 men to take part in this event to
celebrate our 30th Anniversary.
Contact our fundraising team, e-mail:
fr@cafamily.org.uk, Tel: 020 7608
8733 or visit our website for more
information.
Connected Autumn 2009 
 Suppor t groups
Finding the right funding
How to make the most of all available funding opportunities
Many people are experiencing the
pinch as costs go up and salaries seem
to either stay the same or disappear
altogether. For support groups and small
charities, this can be a huge concern.
Competition from other charities can
increase because many are looking to
the same sources of funding to maintain
their services, and individual donors have
less money to give.
One example of a small support
group who have been working hard to
fundraise for their work is the Niemann-
Pick Disease Group (UK). Niemann-Pick
is a group of rare, inherited, metabolic
conditions that normally affect children.
There are a number of types of the
disease, all of which are characterised
by an accumulation of fats in the
liver, spleen and bone marrow. Most
types involve progressive neurological
deterioration. The Niemann-Pick
Disease Group (UK) aims to supports
families affected by the disease through
a dedicated clinical nurse specialist,
helpline, information and through
funding research into the disease.
As Toni Mathieson from NPDG (UK)
explains: “Securing funding to support
our work is not an easy process. As a
Funding links
The Charity Commission
Independent regulator for charitable
activity with useful information on their
website. They have recently produced
guidance looking at the impact of the
economic downturn on charities.
Web: http://www.charitycommission.
gov.uk
Funding Central
A guide to over 4000 grants managed
by the NCVO.
Web: http://www.fundingcentral.org.uk
FunderFinder
Information and advice about
charitable trusts and foundations. Also
have information on writing grant
applications.
Web: http://www.funderfinder.org
 Connected Autumn 2009
small national charity, the group often
encounters difficulties when applying for
grant funding. Many application forms
are long and arduous, taking up time and
resources that are scarce and precious.
“With only two administrative staff, we
are only too aware of the impact this
bureaucratic process can have on our
daily activities – yet it is essential that we
increase our efforts in this area and focus
on creating successful applications that
will ensure the continuation of our work.
“Even a small grant can make a large
difference to our effectiveness, and we
are continually seeking ways to inspire
new supporters, whilst retaining more of
our existing ones. Despite the economic
downturn, this past year has seen an
upward turn in the amount of fundraising
activities organised by our members,
friends and families.
“Achieving success can also bring
challenges – there is an increasing need
to demonstrate impact, to measure
outcomes and to ensure you are meeting
the criteria set out in your grant offer.
Although this is an essential part of the
funding process, it can significantly add to
the administrative burden.
Government Funding
Access to government grants, managed
by the Directory of Social Changes.
Web: http://www.governmentfunding.
org.uk
Grants Online
Subscription based information on
funding opportunities.
Web: http://www.grantsonline.org.uk
The Kings Fund
Run an Impact award designed to
reward health sector charities.
Web: http://www.kingsfund.org.uk
Turn2us
Information on access to grants.
Web: http://www.turn2us.org.uk
“The NPDG (UK) has also enjoyed some
success through community and informal
fundraising, and we have a proven track
record of partnership funding with other
grant-making trusts. In order to respond
to the challenging financial environment,
we intend to implement a strong
financial policy, be aware of possible risk
and focus on good governance.”
“Locating suitable
sources of funding and
making applications
takes time and effort.”
Money from grants or trusts is usually
for a specific project which means
the money is restricted in what you
can use it for. If your group wishes to
explore applying for money in this way,
there are a number of websites which
provide the details for many grant giving
organisations. You will need to put some
time in to research which organisations
or trusts are right for the service you are
providing.
As Toni pointed out, locating suitable
sources of funding and making
applications takes time and effort.
Unfortunately, there is no short cut to
doing this.
If you would like any further advice,
please contact Louise Derbyshire,
(contact details below). Previous issues
of Connected have offered some ideas
on fundraising and how to complete
application forms for grants. Please
contact us if you would like to receive
this information.
Next issue – volunteers
Have you used volunteers to help at
events or do specific pieces of work?
In the next issue we will consider
the pros and cons of groups using
volunteers. If you would like to contribute
your experiences or offer tips to other
groups, please contact Louise Derbyshire,
e-mail: louise.derbyshire@cafamily.org.uk
or Tel: 020 7608 8715
Extra Child Trust Fund payments
for disabled children
Our parent adviser and financial expert, Derek Sinclair, explains
how the additional Child Trust Fund payments will work
In the last budget, the government
announced that it will make additional
Child Trust Fund payments to disabled
children.
What is a Child Trust Fund?
A Child Trust Fund (CTF) is a long-
term savings and investment account
for children. Each child automatically
receives a voucher from the government
for £250, which their parents can use
to open a CTF account. Children who
live in low income families are eligible
for an additional trust fund payment of
£250. The government will then make
further payments (of either £250 or
£500) on each child’s seventh birthday.
This money is then invested for your
Help with mortgage interest
costs – update
In our Spring edition, we provided
information about the new rules on
help with mortgage costs via certain
means tested benefits. These new
rules include a shorter waiting period
before you start to get help with your
child and will grow over time. Apart
from these payments made by the
government, it is also possible for you,
or your family and friends to make
payments into your child’s account,
subject to certain annual limits.
Extra payments for disabled children
From 2010 the government will also
pay an additional amount into the CTF
account of a disabled child. This will be
£100 per year or £200 per year if a child
is on the care component of Disability
Living Allowance at the highest rate.
Invested over time, these additional
payments should ensure that disabled
children receive substantially higher
amounts when they eventually come
mortgage and an increase in the
maximum amount of loan that can be
met.
At the time our article was written it
was thought these new rules would
apply to most new claims made after
5th January 2009. However, it has
subsequently become clear that the
Benefit news
to access the money held in their trust
fund account.
Will all disabled children receive these
extra payments?
No. In order to qualify for an additional
payment from the government your
child must have been in receipt of
Disability Living Allowance (DLA) at
some point in the previous year. DLA
is a non means tested benefit paid to
people who have additional care or
mobility needs because of an illness or
disability. If your child is disabled but not
currently in receipt of DLA, phone our
free helpline, Tel: 0808 808 3555 for
further advice or download our guide, ‘A
guide to claiming DLA for children’ from
our website.
In addition, only children born on, or
after 1st September 2002 are eligible for
a CTF. This applies regardless of whether
the child is disabled or not.
When will my child be able to get the
money in their account?
A child must normally wait until they
reach 18 years of age to access the
money in their account. However if
your child has a terminal illness and is
not expected to live for more than six
months, you can get early access to buy
things that your child needs.
Phone the Contact a Family helpline
for further information on any aspect of
Child Trust Funds.
situation is more complex. Whether
these more generous rules apply to a
new claim made after 5th January 2009
depends on the claimant’s individual
circumstances – including what other
income they have.
For further advice, call our free helpline,
Tel 0808 808 3555.
Connected Autumn 2009 
 Other news
On the road to victory
How one family’s hard-fought battle could have benefits for
thousands of UK disabled toddlers
The difference between a normal family Back in 2005, when Justin was still
car and a Motability car specially adapted under three years old, the seeming
to their son’s needs is like night and day injustice of the law prompted Stephen
for Stephen and Wendy Meek. and Wendy to begin a difficult journey,
to force the government to change
As soon as their son Justin reached his the law. Despite getting the car they
third birthday, he was entitled to the needed two years later, the family were
mobility component of Disability Living determined to see their fight through for
Allowance (DLA), and the family got the other families in their situation.
car they had been dreaming about for
three long, hard years. The Motability car Now in Summer 2009, after a four year
has tinted windows so they can change battle, the couple have succeeded in
Justin discreetly when they are out. getting a landmark court ruling which
There are holders for his oxygen bottles moves them a step closer to getting
so they don’t roll about dangerously on mobility benefits for disabled toddlers
the car floor. And there is enough room across the UK.
for all the family – Stephen, Wendy,
Caitlin, Sophie and Justin – as well as Stephen said: “We’re very proud that
Justin’s bulky but life-saving medical Justin’s action may change the lives of
equipment. thousands of disabled children and their
families. We think that the non-payment
“When we got the Motability car, we of mobility benefits to under threes is
headed straight out and drove to Loch simply wrong. Justin has been disabled
Lomond. It was the first time we had from birth and his condition didn’t
been able to go out all together as a change when he turned three. We were
family in one car. We were experiencing left virtually housebound and our quality
life like other families do and we had a of life was seriously compromised
brilliant day,” Stephen recalls. because of this rule.”
Under the Department of Work and Justin was born in June 2004 with
Pensions (DWP) rules, a child is only Prader-Willi Syndrome. He is oxygen
eligible for the mobility component of dependent and cannot walk. The family
DLA when they are three years old or spent an agonising first year of his life
over. Those eligible for high rate mobility wondering if he would survive.
DLA receive £49.10 a week to help with
transport costs or can alternatively use When Justin was 16-months-old, his
this to pay towards a Motability car. respiratory nurse suggested the family
apply for the mobility
component of DLA
so they could get a
specially adapted car.
“We were given all
kinds of misleading
information at that
time. We applied
for the benefit but
were refused, so we
appealed the decision,
unaware of the rule.
We were actually given
an appeal hearing
at the DWP office in
Justin, centre, with his sisters Caitlin and Sophie Glasgow,” said Stephen.
10 Connected Autumn 2009
“The day before the appeal, we were
contacted by the office to say there was
no point attending the appeal because
he wasn’t three. That was the first time
we heard about the rule. I was so angry
that I said we were going to attend
anyway. I went along with Wendy and
Justin and we were told our claim was
“tedious and ridiculous”.”
“Despite getting the car
they needed two years
later the family were
determined to see their
fight through.”
It was the family’s relationship with
Cameron Fyfe, a human rights lawyer,
which was the catalyst for the court
action. When he heard their story,
he suggested that they may be able
to challenge the law by arguing it
contravened their son’s human rights.
After doing some research, Fyfe said that
they could seek a judicial review of the
DWP rule.
Last November the family appeared
at the Court of Session in Edinburgh.
During the hearing their lawyer argued
that the law as it stands contravenes
Justin’s human rights. The judge in the
case, Lord Woolman, published his
opinion in June this year. He ruled that
the DWP may be breaching Justin’s
rights under European law. The ruling
could force the DWP to review its current
position of non-payment of mobility
benefits to under threes. There could be
up to 10,000 families in the UK affected
by this issue at any one time.
This is a significant victory for families
with disabled children in the UK. While it
is likely that the law will change, there is
no guarantee at this stage. Any changes
in the law are likely to take some time.
We hope to have an update on the
situation and the position of the DWP in
the next issue of Connected.
New report shows disabled children
missing out on basic NHS care
Every Disabled Child Matters report demonstrates NHS failings
Every Disabled Child Matters (EDCM)
has launched a new report which
underlines the failure of the NHS to
meet even the basic needs of disabled
children.
The campaign report, Disabled Children
and Health, highlights a clear disparity
between central government policy
and local delivery. Despite recent
policy and funding commitments for
disabled children’s health services,
the campaign’s correspondence from
Primary Care Trusts (PCTs) reveals
widespread confusion about the roles
and responsibilities of the health service
to support disabled children to lead
ordinary lives.
One parent of a child with a rare and
life-limiting condition who requires
24-hour care told EDCM: “We repeatedly
see local agencies passing the buck
when it comes to agreeing care for my
son. Social services tell us they can’t
provide night care for him because it is
medical care, while health tell us they
can’t provide it because it is a family
support service. Where are the needs of
my son in all of this? We haven’t seen
any evidence of joined-up working, and
we are made to feel like we have to beg
to get anything done.”
The report highlights challenges across
a range of health services. Disabled
children face barriers accessing universal
health services such as GPs and dentists,
often due to inappropriate attitudes from
health professionals or a lack of training.
Families with disabled children needing
specialist health services such as
equipment or wheelchairs also face
battles. Parents tell of waiting years to
receive a wheelchair that meets their
child’s needs, with the child having
out-grown the chair by the time it is
delivered.
Disabled Children and Health makes
clear that families are yet to experience
the ‘high quality’ and ‘responsive’ health
services that would enable them to
lead ordinary lives, as set out in the
recent child health strategy, Healthy
lives, brighter futures. They are also not
experiencing the ‘improved outcomes
and experiences’ foreseen by the
children’s palliative care strategy, Better
Care: Better Lives.
“The report highlights
challenges across
a range of health
services.”
EDCM is calling on the Department
of Health and PCTs in England to
implement the following priority
recommendations:
• The Department of Health should
inform PCTs that their annual
Operating Plans will not be agreed
unless they demonstrate that their
spend on disabled children’s services
and children’s palliative care services
reflects national policy expectations.
• Every PCT should have a named
lead at a strategic level responsible
for services for disabled children,
including children with complex health
needs and children with palliative care
needs, by December 2009.
• Every PCT should publish information
on the additional funding they have
allocated locally for each financial year
(2008-2011) to disabled children’s
services, separately identifying
short breaks, children’s community
equipment, children’s wheelchairs and
children’s palliative care.
Other news
EDCM board member and director of the
Council for Disabled Children, Christine
Lenehan, said: “We have welcomed
the priority given to disabled children
in the recent child health strategy and
the confirmation that PCTs have £340
million in their baseline budgets from
2008-2011 for disabled children’s
services, including children’s
palliative care.
“But in the context of a devolved NHS
this will only make a difference to the
lives of disabled children if every PCT
demonstrates strong leadership and
has a clear accountability structure for
disabled children’s services. To ensure
this happens, the Department of Health
must take a stricter monitoring role in
relation to the performance of PCTs.”
You can read the report in full at Web:
http://www.edcm.org.uk/pdfs/edcm_
disabled_children_and_health.pdf
Contact a Family is one of the founding
members of EDCM, the campaign to get
rights and justice for every disabled child.
Our parent guide, The NHS and caring
for a disabled child has information
about using the NHS and how to make
a complaint. Phone our free helpline, Tel:
0808 808 3555 for a copy or you can
download it from our website.
Connected Autumn 2009 11
 Other news
The Disabled Children’s Services
National Indicator
Forming a baseline for disabled children’s services
In the Spring issue of Connected we told
you about a survey being sent out to a
sample of parents of disabled children,
to ask for their views on the services
they receive.
The survey asked parents about their
experiences of health, education and
care, and family support services. The
aim was to get feedback from parents of
children with a wide variety of disabilities
across England. The answers parents
have given formed the baseline of the
National Indicator for disabled children’s
services, also known as NI 54. The
performance of 30 local areas has been
compared against this national baseline.
Each area has received a score for how
they provide information, carry out
News in brief
Families with disabled
children among carers
identified at breaking point
by new research
Carers UK is calling for a radical
overhaul of the benefits and care
system to prevent carers reaching
breaking point. New research published
for Carers Week found that almost
three-quarters (74 per cent) of people
providing unpaid care for a loved one
who is ill, frail or disabled have reached
breaking point due to the pressures of
their caring role.
Life chances survey for
young disabled people
Leonard Cheshire Disability is currently
compiling research into young
disabled people and their ‘life chances’
compared to those of non-disabled
young people. They are looking for
young people between the ages of 16-
21 to take part. The survey closes on
5th October 2009 and completed
surveys will also be entered into a prize
draw for Amazon vouchers. To take
part, e-mail: mary.hough@LCDisability.
org or visit Web: www.lcdisability.org
12 Connected Autumn 2009
assessments, explain decisions, involve
parents in decisions about their child’s
services and provide parents with the
opportunity to feedback on services. A
more detailed breakdown of the returned
questionnaires for these areas should
appear on the Department for Children,
Schools and Families (DCSF)
website soon.
The DCSF will be sending the survey
out again in late September to reach
a larger sample of parents of disabled
children and measure performance in
the remaining local areas.
The results for these will be published
for all local authorities and primary
care trusts in December. Local
David Cameron’s plans
to remove bureaucracy
for families with disabled
children welcome
David Cameron, Leader of the
Conservative Party, has set out his
party’s plans to help families with
disabled children. Writing in The
Independent newspaper, David
Cameron made a pledge to remove
the bureaucracy that families with
disabled children face trying to access
the support that they and their
children need. Srabani Sen, Chief
Executive of Contact a Family, said:
“We warmly welcome David Cameron’s
acknowledgement of the ‘battle’ that
families with disabled children have
in getting support and applaud his
continued efforts in raising awareness
of the issues for families with disabled
children.”
OpenBritain – new
information resource for
travellers with access needs
Tourism for All UK, RADAR, and the
National Federation of ShopMobility
have teamed up with national tourism
bodies to create a new definitive guide
book and website for people with
services should be looking to channel
money and resources into improving
services provided and increasing their
performance against the disabled
children’s services indicator.
The questionnaires will be repeated on
an annual basis, so areas can measure
how they are progressing. If you receive
a questionnaire, please do take time to
fill it in and return it.
The results for the areas available to view
are at Web: http://tinyurl.com/r2aqlm
For more information on the National
Indicator and the core offer visit Web:
http://tinyurl.com/n6dvb2
disabilities and access requirements.
OpenBritain will provide a recognisable
brand for all types of accessible
facilities. Entries in OpenBritain will
either have had an access inspection,
or apply for self-certification, with all
members subject to random checks.
The new annual guide book will
replace those currently published
by Tourism for All and RADAR. Web:
http://www.openbritain.net
ACT launches free Family
Companion for parents
ACT, the Association for Children’s
Palliative Care, has launched a new
publication to help families and carers
of children and young people with life-
limiting and life-threatening conditions
understand what will happen following
their child’s diagnosis. ‘A Family
Companion to the ACT Care Pathway
for children with life-limiting and life-
threatening conditions’ takes parents
through the care journey that they and
their child will experience, step by step.
ACT will be distributing this publication
free to families of children with life-
limiting and life-threatening conditions.
Tel: 0117 916 6422, or e-mail:
susannah@act.org.uk to order a copy.
Theme of the issue
Healthy living and wellbeing
Introducing this edition’s theme, focusing on all round wellness
Keeping yourself and your whole family
healthy can be tough. When you’re
bringing up a disabled child, your own
health often comes a poor second to
everyone else’s.
Parents tell us time and again that they
struggle with the amount of stress they
experience, fighting for the right services
and support for their child. Then there’s
the physical problems like back ache,
pains and exhaustion that can come
from the day-to-day caring for a child
and struggling with sometimes old and
unwieldy equipment.
In this autumn theme of Connected,
we’re looking at things that work for
parents to help deal with stress, like
relaxation and massage, and we’ll be
giving you a list of resources to help keep
you and your family healthy.
Mind, exercise, nutrition... do it!
Ruth Card, one of our Volunteer Parent Representatives explains
how MEND has had a positive impact on her family
The MEND Programme is a fun course
for families with children whose weight
is above the healthy range for their age
and height. The MEND (Mind, Exercise,
Nutrition... Do it!) programme helps
children and families manage their
weight better and lead healthier lives. It
runs twice a week after school time, in
two-hour sessions over ten weeks.
It was a pleasant change to attend the
St Helens and Halton MEND open
evening and be welcomed with open
arms by the nutrition leaders and
exercise coaches alike and not to feel like
we were causing them extra work, which
so often happens. They immediately
adapted the exercise course planned so
that my daughter, Alice, could work at her
own level and achieve.
Alice’s level of learning difficulties mean
that the nutrition aspects are not within
Healthy living and wellbeing
In our recent report What makes my
family stronger almost 60 per cent of
respondents said that their opportunity
to get a good night’s rest was poor
or unsatisfactory. In this issue we
interview a parent about a massage and
aromatherapy course she attended and
how it’s benefited her family’s sleep.
Other stories come from parents and
organisations that help disabled children
stay healthy, including those with
complex health needs and those who,
with a little help and communication
can access mainstream healthy living
schemes, like the MEND programme.
In a recent national survey by the
Foundation for People with Learning
Disabilities, fathers were asked for
ideas on maintaining their health. They
suggested that there should be regular
her capabilities but the targets can be
adapted and have been. Marching round
the supermarket as a group looking
at labels for fat and sugars was an
experience not to be forgotten, trust me!
Alice has loved and benefited from
the exercise twice weekly. To have her
participate with none of what feels like
the all too frequent requirements for
extra support staff, or focus on what she
can’t do has been a welcome change.
Alice and her brother David, doing
something together is also good.
David just loved doing the course and
running round as fast as he could.
Embarking on a course that is after
school twice a week for ten weeks does
require a huge amount of effort but I
think we will notice a big difference with
both children after it for different reasons,
so it’s worth it!
health check-ups (‘an annual MOT’), that
they would benefit from using a gym or
exercising, help with sleep problems and
help with improving their diet. You may
be interested to see on the resources
page that Carers UK have linked up with
Lloydspharmacy to offer free health
checks for all carers, including
parent carers.
We hope you find something useful to
help you, or are inspired by our parent
stories about what works for them.
And remember you can always call our
helpline, Tel: 0808 808 3555 if you have
any concerns about your own health
– physical, financial or emotional – we’re
here to help and listen. You can also call
our parent advisers about any aspect
of your caring situation and your child’s
rights, health or education.
The programme is offered free to
families and they currently offer three
different programmes which families
can join:
• MEND Programme which is for
overweight children aged 7-13 years
old
• MEND 5-7s, which is for children aged
5-7 years old, which also involves
parents or carers
• Mini-MEND Programme, an early years
healthy lifestyle programme for 2-4
year olds and their families, whatever
the child’s weight.
Find out more about the MEND
Programme at Web: http://www.
mendprogramme.org
Connected Autumn 2009 13
 Healthy living and wellbeing
A carrot and stick… for a
healthy lifestyle
Adele Meader takes a light-hearted look at how you might gently
persuade your child to take part in some exercise
My son can walk lovely when he
wants to,
which is rare.
Why oh why should he walk
when he can be pushed everywhere?
We all know, and we’ve been told
enough times by the government, that
exercise is a vital part of healthy living.
But what’s a parent to do if your child has
difficulty moving around. Or if your child,
like my son Christopher, simply refuses
most of the time to walk, preferring to
use his buggy.
“Food can also act as a
good carrot, although
an actual carrot
probably won’t be
enough – or certainly
not in Christopher’s
case.”
This was all fine and dandy when
Christopher, who was born with
9q11.del (a rare chromosome disorder),
was small, but beware the “just pick him
up, we are late already” and “stick him
in his buggy, he loves the sensation”
options. There may be unexpected
consequences of this as your child
gets older, expecting to use their buggy
the whole time even if they can walk.
You could quite possibly feed into their
‘challenging’ behaviour in later life.
Having a child who can walk, but then
chooses not to, left me obsessing over
his ‘lack of exercise’ and consequently
his bowel movements, or lack of, which
ultimately left me thinking of ‘creative’
ways to get Christopher on his feet using
carrot and stick style tactics.
I discovered that favourite toys can get
you to the corner shop, and to the car,
14 Connected Autumn 2009
and even around the town. For several
years a member of our family was
assigned to carry Christopher’s favourite
toy to entice him to walk. It was one of
those wooden contraptions with brightly
coloured beads on it that he could push
round some bendy wires. It was heavy
and cumbersome and needed its own
seatbelt, but it got us out of the house
and Christopher’s digestive system
working.
A ball was great for a couple of years.
Christopher should have been entered in
the Guinness Book of World Records for
that bouncing! We could only really use
this to get down the garden path to the
car though as once too often we forgot
the green cross code and ran out in front
of speeding cars...
Food can also act as a good carrot,
although an actual carrot probably
won’t be enough – or certainly not in
Christopher’s case.
Food is Christopher’s favourite past-time.
I once managed to get Christopher to
walk two miles around Stourhead, a
National Trust estate in Wiltshire, one
afternoon, following a piece of gateaux.
The Women’s Institute had a cake stall
in the grounds on this particular outing,
and my son clocked the goodies before
I had. Still to this day I wonder how he
saw that stall. I actually think he has an
inbuilt cake radar system! Anyway, in true
‘Little Britain’ style, my son leapt from his
wheelchair and ran at great speed to the
cake stall. Only my sensible shoes saved
the WI ladies from collapse.
After lots of shrieking from the WI gals,
I felt obliged to buy the piece he was
squishing between his fingers. It was
kindly put onto a paper plate whereby I
threw some money their way whilst hot-
footing it as far away as I could possibly
get. And far away I managed too, before
wondering if getting my son to run at
speed, and boy, was he focused, after
a piece of chocolate cake could be
deemed child cruelty. Anyway, that
thought didn’t last long. I tend to use this
tactic at most stately homes, parks and
beaches. Desperate times can call for
desperate measures, as you can see.
I also enlist the help of other parents
and professionals where I can, to get
my son ambulant. The best one for
him at the moment is swimming. I’m
very lucky with the school he attends,
who have him swimming three times a
week in the school pool. It’s essentially
like a massive warm bath, with soft dim
lighting and classical music.
“In true ‘Little Britain’
style, my son leapt from
his wheelchair and ran
at great speed to the
cake stall.”
Christopher’s opt out from walking left
me constantly re-evaluating everything
we did with him in how to get him
mobile. And whilst his school have
suggested he might benefit from more
swimming, their pool is a far cry from
the local baths. I can’t quite face the
prospect of minus 12, fluorescent light
and screaming kids jumping in around
Christopher’s head. Given the choice,
I’d rather give him a piece of Victoria
sponge any day of the week!
Theme of the issue
Brainwave aids child development
and family well-being
Donna Giles writes about the positive effects on the entire family
when son Nathan made huge progress through a programme
designed to aid physical and cognitive development
My family has been visiting the
Brainwave Centre in Somerset for about
11 years now.
Brainwave is an independent charity
which helps children aged six months
to 12 years old who have a brain injury,
genetic condition or developmental
delay.
Like many families, when our son
Nathan was diagnosed with Cerebral
Palsy, we were referred to our local
child development centre. However,
we increasingly felt that the amount
of physiotherapy input he was getting
was not enough. And when Nathan
was about two and a half years old, we
felt the time was right to explore other
options.
We had family members who lived in
Somerset and recommended we try the
Brainwave Centre, so we booked for an
initial two-day assessment.
At the time of our initial consultation
Nathan was not talking, nor rolling. We
The Giles family on a recent holiday to Disney World
Healthy living and wellbeing
were taken through the assessment, with
everything being fully explained to us as
we went along. On our second day we
were taught a programme of exercises,
to be carried out daily, which focused
on both his physical and cognitive
development.
The most important aspect to come out
of the assessment was the positive focus
on Nathan’s abilities, and how we could
develop those abilities. There was a
belief in him that we had not had before
from professionals. The therapists at the
centre encouraged us to believe that we
could help our son.
When we returned home with our
programme and video of our exercises,
I set about finding volunteers who could
help us carry them out, as many required
two people. We had an overwhelming
response from the local 6th Form College
and soon had many students visiting us
every week to lend a hand.
Within four months Nathan was rolling
and talking. He has continued to make
progress, and although he still has issues
with his mobility, we are sure Nathan
would not have achieved all he has done
without the input we have had from the
Brainwave Centre. Last year he became
the youngest person ever to speak at
a UN Pre-sessional Formal Meeting
discussing Children’s Rights in the UK.
Not bad for a child who didn’t talk until
he was three!
Nathan is now 13 years old, and we
continue to visit the centre around
every six months. Their support over
the years has included writing reports
for statements and giving advice to his
schools. If we have any queries they are
always at the end of the telephone. We
are also lucky to have a great family
co-ordinator in our area.
When Nathan recently had an operation
I felt confident to carry out his post-op
physiotherapy as most of it was already
in his programme. Our community
physiotherapists are supportive of the
programme, and it compliments the
work they do.
Nathan’s sister, Cerys, also has Cerebral
Palsy, and she too is making great
progress with her Brainwave Programme.
Through our continued association
with Brainwave we have come to know
everyone at the Somerset centre very
well, with a friendly rivalry developing
over cricket. It’s been hugely beneficial to
Nathan’s health and well-being, and to
ours as a family. Above all, the Brainwave
therapists have continually encouraged
and supported us in our goal of helping
our children to reach their full potential,
and have empowered us as a family to
believe that they can achieve.
Visit Web: http://www.brainwave.org.uk
or contact our helpline for information
about similar organisations.
Connected Autumn 2009 15
 Healthy living and wellbeing
Staying healthy
Handy resources to help you and your family
As a parent of a child with a disability or
additional needs, it’s important you look
after your own health and wellbeing.
The Carers (Equal Opportunities) Act
2004 requires local authorities to tell
carers about their right to a careers
assessment. It also makes sure that
work, education and leisure issues are
considered when you’re being assessed.
The aim of the carer’s assessement is to
give you a chance to tell social services
about the things that could make looking
after your child easier for you. This
may result in getting services or direct
payments to meet your assessed needs.
You can contact your local social services
to request an assessment.
Carers UK
CarersLine: 0808 808 7777
Web: http://www.carersuk.org
Have lots of useful information for carers
and run an advice line. They have also
partnered with Lloydspharmacy so their
pharmacists can offer healthcare advice
to carers and free health checks.
Princess Royal Trust for Carers
Web: http://www.carers.org
Offers support services for carers, with
Finding a little ‘me’ time
Everyone deserves a break and a bit of pampering, no group more
so than parents and carers of disabled children
Nohra Gonzalez tells us about several
pamper sessions she has attended at
our Southwark project office. As part
of the Body Shop Foundation funding
Southwark received, she also took part
in a month course to learn the basics of
massage and aromatherapy.
Can you tell us a little bit about your
family?
We have three children, Andres, Steven
and Jessica who has severe learning
disabilities and autism. Life is difficult at
16 Connected Autumn 2009
branches throughout the UK, some of
which provide training, massage and
relaxation at reduced prices. Also has
information on their website about
managing stress and taking care of
yourself.
Carers Direct
Tel: 0808 802 0202
Web: http://www.nhs.uk/Carersdirect
Information, advice and support for
carers including a free helpline and
database of local services.
Complementary healthcare: a guide
Web: http://tinyurl.com/2tmyn2
The Prince’s Foundation for Integrated
Health have an online guide that offers
basic information about complementary
therapies, what they are used for and
finding a qualified practitioner.
Dealing with stress and anxiety
Parents often tell us they feel so stressed
and overwhelmed coping with their
child’s needs and battling to get the right
services they start feeling anxious all the
time. They may even go on to develop
depression. If you’re feeling constantly
anxious, it’s important to seek help now,
rather than carry on ‘coping’ until you’re
completely burnt out. Your GP or local
times. I worry that the extra time I need
to spend with Jessica leaves the other
children out. It’s hard when you have
one child that needs so much more
attention than the others.
How long have you been attending
pamper sessions?
Apart from the course, only about three
or four sessions but they are really
fantastic. It’s something that’s just for me
and most of the time, I have no time for
me so this break in routine and the fact
carers centre should be your first port
of call. They can put you in touch with
counselling services, relaxation classes or
refer you elsewhere if necessary. You can
also ask for a carers assessment.
Some Princess Royal Trust for Carers
centres provide counselling themselves,
or can refer you to your GP or another
voluntary organisation in your area
like Mind. Or you can find a trained,
registered counsellor or psychotherapist
at the British Association for Counselling
and Psychotherapy, Tel: 01455 883316 or
Web: http://www.bacp.co.uk
Whatever you do, it’s important to tell
your GP you’re the parent carer of a
disabled child as they can be a gateway
to lots of services and support. They can
put a note on your records and any new
services from them can be sent to you.
Managing Stress for Carers
Web: http://www.cerebra.org.uk/parent_
support/support/stress.htm
Tel: 0800 328 1159
This book produced by Cerebra is based
on their research project and is aimed
at helping carers to manage stress. The
book can be downloaded from their
website or is available from their helpline.
that I’m learning something new
is brilliant.
What have you gained from the
training course on pampering?
The training was excellent. It’s been so
helpful, in particular with Jessica. Usually
she doesn’t like to be touched but now
she loves it when I use the oils. I don’t
generally do massage with her, I use
them for more of a relaxation technique
which really helps her sleep. And this of
course helps the whole family!
Theme of the issue
Feeling Phab – spotlight on how Phab can help children take part in fun activities
Phab first started in 1957, a time when
there was little available in terms
of accessible clubs for people with
disabilities. At that time it was apparent
that people with physical disabilities
wanted to enjoy the same activities
as their able-bodied friends without
being patronised. Phab was set up
with the aim of offering social activities
for everyone, regardless of ability and
disability, which can have a huge
positive impact on people’s heath and
wellbeing.
Organisations for children
MOVE
Tel: 020 7403 6382
Web: http://www.move-europe.org.uk
Activity based programme which uses
the combined knowledge of education,
therapy and family to teach severely
disabled children and adults the skills of
The training has also boosted my
confidence. I meet with other mums
once a month and I have passed on
what I’ve learnt and they have been so
receptive to it. To share this with other
struggling parents makes me realise
how much this sort of thing is needed.
I would love to do a more advanced
course but it has to be one that parents
can afford as some are so expensive.
How do they affect your health and
well being?
We all sleep better and the atmosphere
at home is more relaxed and calm.
Jessica can be hyperactive and using
certain oils helps to calm her down.
When you have a disabled child, you can
be so busy that you don’t realise that
there are things that can help you and
your family. That’s what this has taught
Healthy living and wellbeing
As Janine Williams, Phab’s London
Development Officer commented:
”Sometimes our clubs are people’s last
hope. Often a child can be excluded
from a swimming club or scouts
simply because they are not able to
cope with his or her disability, due to
lack of accessible facilities or training.
Mainstream clubs aren’t always able to
cope with a disabled child, but Phab
clubs can really help encourage self-
confidence and independence, and
can provide social or sports activities
which the whole family can enjoy
together”.
Thelma, who takes part in a Phab
clubs, said: “Belonging to the Phab
club has made such a difference to
my life in many ways. I have been a
member of Phab for many years now
and personally have made so much
progress in my life. Phab makes you
realise that you are not alone in your
situation and it inspires everyone
to have a happy and laughing club,
sitting, standing, walking and transferring
to the very best of their ability. Aims
to give children more opportunities for
independent movement.
Phab
Tel: 020 8667 9443
Web: http://www.phabengland.org.uk
me – that I can sometimes live in the
moment and experience a sense of calm
and wellbeing.
Some tips to help parents relax and
take care of themselves:
• don’t feel under pressure to do
everything
• try to sleep well
• have a massage
• eat well and enjoy mealtimes
• go swimming
• book a ‘me’ time on your calendar
• socialise or take up a hobby
• have an hour to yourself when
possible
• take part in exercise or yoga
• visit your GP if you feel unwell.
where the members are all friends
with each other.”
Today Phab clubs offer a wide range
of activities, depending on what their
members want – arts and crafts,
drama, discos, swimming, sailing, visits
to theme parks and outdoor activity
centres.
As Rebecca Hargreaves, Phab’s
National Development Manager, says:
“Many children miss out on school
trips because of access issues, but on
a Phab trip all the activities are totally
accessible. Some youngsters use a
wheelchair, some have a sensory
impairment and others are physically
able but have other needs, and
everyone participates very successfully.
In addition we run groups for older
children where they learn more about
looking after themselves and can gain
valuable life skills”.
For contact details, see below.
National charity dedicated to the
integration of people with and without
physical disabilities in all aspects of
society. Has a network of nearly 200
clubs throughout England and Wales
for all age ranges, offering activities and
holidays which members can share and
enjoy together.
Connected Autumn 2009 17
 Resources
Supporting parents and carers
– A trainer’s guide to positive
behaviour strategies
Sharon Paley, Chris Stirling and
Mark Wakefield
18 Connected Autumn 2009
This trainer’s guide is intended to
provide parents and carers, as well as
professional trainers, with materials to
deliver training in positive behaviour
strategies. There are eight sessions in all,
with PowerPoint slides (on a
CD-ROM which is included), handouts
and session plans.
After ice breakers and an introduction
it starts off with asking people to think
about what we feel is acceptable
behaviour, and how we react to it. There
are activities to enable participants to
examine how personal experience,
mood, and capacity to manage a
behaviour can affect our view of some
behaviours. It looks at things such as
intensity, frequency and ‘triggers’ and
discusses how a behaviour may often
feel more intense and difficult than it
appears to others because of the way it
is experienced.
It goes on to look at causes, and aims
to give participants some insight into
behaviours and the reasons for them. It
encourages participants to find a way of
supporting their child to see that doing
things in a different way can bring the
same results. It also covers relationships
and behaviour management strategies.
Session seven, ‘Supporting your child
– and you’ shows how challenging
behaviour can affect the family as
a whole. It reinforces the need for
consistency and for family members to
work as a team in order to address issues
being experienced.
Sessions are clearly set out and designed
to be easily understood by those who
may have limited formal training. It’s
encouraged for participants to share their
experience with others and suggests that
the realisation that you are not on your
own can help put things in perspective,
which can then help to increase
confidence in dealing with situations.
Yvonne McGahren
e-mail: yvonne.mcgahren@cafamily.org.uk
Published by The British Institute of Learning
Disabilities (BILD)
ISBN 978 1 905218 07 3
Web: http://www.bild.org.uk
A day in the life...
In our new feature, we hear from Jacqui Law, about her
experiences as one of our Volunteer Parent Representatives
My name is Jacqui Law and I am the
Volunteer Parent Rep for Dumfries and
Galloway. I live there with my husband
Graham and our amazing daughter,
Sarah, who is 13 years old. Sarah has a
rare chromosome disorder, Ring 18 and
an autistic spectrum disorder.
About six years ago, I started thinking
about returning to work and how I
could help other parents. Because
of my background in advice, I have
very strong views about the quality of
information and advice people should
receive. I believe information should be
accurate, accessible and readable. I also
believe passionately that parents and
carers of children with a disability are a
huge and untapped resource, and that
Jacqui with her daughter, Sarah and husband, Graham
Local contacts – support from Contact a Family
Volunteer Parent Representatives
Contact a Family has a team of Volunteer
Parent Representatives throughout the
UK. They are all parents or carers of
disabled children themselves, some with
quite complex and rare conditions. They
fully appreciate the impact of caring for a
disabled child.
Our team of Volunteer Parent
Representatives offers someone to talk
Resources - Local contacts
the commitment and experience they
bring can only enhance the work of any
organisation supporting families like
mine. When I looked at what Contact a
Family had to offer to families, I felt then,
as I do now, that this was an organisation
which could make a difference.
There really is no typical day or even
week for me! Like all volunteer parent
reps, I have a dedicated phone line
in my home so parents, and anyone
involved with families with a disabled
child, can call me with an enquiry or
sometimes just to talk. I take quite a few
enquiries by e-mail as well.
I also give talks about Contact a Family
to parent groups and professionals,
to and signposting to local sources of
information and support for families.
Family Workers
Contact a Family has a team of
experienced Family Workers, covering
different parts of the UK. Our Family
Workers can help with any of the wide
range of issues that families can face
when caring for a disabled child, such as
claiming benefits, providing information
have a stand at events, represent
Contact a Family locally at meetings and
am involved in representing parents’
views in consultations. And no, I’m not
supermum. I don’t do all of this at the
one time! Some months my phone line
can be quiet, and other times, like this
last month leading up to the school
holidays, it can be really busy.
I’ve had 16 enquiries this month, which
is quite a lot. The school holidays can
be very stressful for parents like us. Most
of the calls I took last month were from
parents who were anxious about how
they were going to cope with their kids
for the holidays, about the shortage of
leisure and social opportunities and
generally about needing more short
breaks. I can let parents know what is
running locally and who to contact to ask
for information. Sometimes I just listen
and that can help. Sometimes though
a parent will call and ask a question I
just can’t answer, for example complex
benefits advice, so I refer them to our
helpline.
Recently a mum I spoke with ages ago
phoned. Both our kids are on a gluten
free diet. She called to tell me she had
managed to find a gluten free birthday
cake for her boy, and she remembered
about Sarah so phoned with the details.
It was a lovely thing to do, and reminded
me why I love doing this – because
supporting each other really helps make
a difference to all of us.
about SEN, through to putting you in
touch with local and national sources
of support.
How to find your local contact
Contact our helpline, Tel: 0808 808
3555 or check our website, Web:
http://www.cafamily.org.uk/inyourarea
to find out if there is a Family Worker or
Volunteer Parent Representative
near you.
Connected Autumn 2009 19
 Getting in contact with us

Contact a Family
209-211 City Road
London EC1V 1JN
Tel: 020 7608 8700
Fax: 020 7608 8701
e-mail: info@cafamily.org.uk

www.cafamily.org.uk
www.makingcontact.org

Ring the Contact a Family freephone helpline for

advice and information on any aspect of caring
for a disabled child.

Contact a Family is the only UK charity providing

support and advice to parents whatever the
medical condition or disability of their child. Our
helpline is a ‘one-stop-shop’ for parents and
families whenever they need answers.

Registered Office: 209-211 City Road,

London EC1V 1JN
Registered Charity Number: 284912
Charity registered in Scotland Number: SC039169
Company limited by guarantee
Registered in England and Wales No. 1633333
VAT Registration No. GB 749 3846 82

Freephone helpline: 0808 808 3555

Textphone: 0808 808 3556
Open Mon-Fri, 10am-4pm & Mon, 5.30-7.30pm