Every Disabled Child Matters
Right from the Start
What we want from the next Government
Introduction:
Every Disabled Child Matters (EDCM) is the national campaign to
get rights and justice for every disabled child. It is run by four
leading organisations working with disabled children and their
families: Contact a Family, Council for Disabled Children, Mencap
and the Special Educational Consortium.
This report is also endorsed by a number of organisations that
support disabled children, young people and their families: CLIC
Sargent, Family Fund, National Deaf Children’s Society (NDCS),
RNIB, Sense, and Together for Short Lives.
We believe that disabled children, young people and their families
should be able to lead fulfilling lives and be part of their
community.
As becomes clear from the real-life experiences in this report, we
are still a long way from disabled children, young people and their
families being able to live their lives the way they want. We believe
that in order for this to change the next Government must ensure
that policy making across all aspects of government recognises
the needs of disabled children, young people and their families,
right from the start.
The report is focussed on the UK General Election. Where issues
raised relate to areas that are devolved, the issues highlighted
relate to English policy.
Recommendations
The new Government must, right from the start, consider the
needs of disabled children, young people and their families.
We therefore recommend that, in the first three months after taking
office, the new Government should develop a cross-departmental
strategy, co-produced by disabled children, young people and their
families.
1.
2.
3.


Vision: the strategy should set out the Government’s vision for
addressing the needs and concerns of disabled children,
young people and their families.
Involvement: the strategy should provide opportunities at all
levels of government for disabled children and their families to
have their voices heard.
Delivery: the strategy should identify a ministerial lead in each
department who will be responsible for:
reporting on the potential impact of that department’s policies
on disabled children, young people and their families before
they are introduced.
reporting on how the department is progressing in implementing
the cross-departmental strategy, including identifying whether
there is sufficient funding available to achieve the vision set out
in the strategy.
Meet the families, children and young people who have shared
their experiences in this report:
Pauline:
“My daughter is a single parent with a 17 year old son and a 3 year
old daughter. My eldest grandson has quadriplegic cerebral palsy,
epilepsy, learning disabilities, and communication problems since
an accident during his birth caused by medical negligence. The
stress of caring for him has caused my daughter’s relationship with
both her children’s fathers to break down.
Between myself and his other grandparents we look after him most
weekends to give my daughter a break. I am one of his deputies
assigned by court under the Mental Capacity Act and I undertake a
lot of the financial and administrative side of supporting my
grandson and daughter, who does most of the day-to-day caring.”
Helen & Maja:
“Maja was born in 1998 and seemed fine at first. Very early on I
had suspicions that something was wrong as she was extremely
quiet, very floppy and she started failing Health Visitor hearing
tests after 3 months. She also had some features consistent with
learning disabilities. 4 months on, our GP had referred her to
physiotherapy, audiology, geneticist and a pediatrician as she
couldn’t hold her head up.
Within 6 months she was attending regular appointments. By the
time she had started playgroup at 18 months she was rolling
around the floor. Maja couldn’t hear anything until she was 2 years
old and we had introduced her to Makaton by 2 and a half.
Sam:
Sam is 18 years old and is currently studying for her A’ levels,
having recently successfully taken AS levels. She is actively
involved in a number of local and national projects that promote
inclusion with a focus on communication.
She says: “It is really important to have a Personal Assistant
through Direct Payments or a Personal Budget so that I am in
control of which activities I participate in. In future I want to go to
university and I’m really worried about the impact of the withdrawal
of the Independent Living Fund and changes to the Disabled
Students Allowance.”
Lesley and Ruby:
Lesley describes Ruby as her “very determined, very funny 6 year
old daughter. She was born with CHARGE and is multi-sensory
impaired (MSI).”
Ruby attends a specialist school for deaf children, which involves
an hour’s journey to and from school each day. Ruby has a 14
year old brother. Lesley says: “When Ruby was first born, he was
very stressed, but now he doesn’t see her as a problem, she’s just
his sister. Ruby, on the other hand, sees her brother as someone
to boss around!”
Laura:
Laura is 23 and was diagnosed with bone cancer, Ewing Sarcoma,
in 2013.
Laura described her treatment to us, saying: “My days revolved
around the hospital - I was in and out, so I didn’t feel great when I
came home. I’m lucky that I’m living with my mum who can help
support me financially. Now my mum has to work three jobs to
support us both.”
Poverty and financial wellbeing:
A young person with a learning disability commented on his family
situation to Mencap, saying: “We are struggling financially. It
makes me feel quite sad for my parents. My mum doesn’t work
due to ill health and also because she is my carer.”
Lack of money can be a huge pressure and additional worry for the
families of disabled children and for young disabled people.
4 in 10 disabled children are living in poverty [1]. 31% of families
with disabled children are going without food and 33% are going
without heating.[4] This is partly because:
 It is three times more costly to bring up a disabled child than a
non-disabled child.[1] For example, 86% of parent carers are
paying £5 or more an hour for childcare.[2]
 Only 16% of mothers with disabled children work compared to
61% of all mothers.[3] A lack of flexible employment options
and suitable childcare are a big part of this problem.
Work
Expenditure on disability can put serious pressure on a family’s
finances. This is compounded by the fact that many families with a
disabled child are unable to offset this extra expenditure by
bringing in money. This leads to families having to make choices
they should never have to; like going without food or going without
heating.
Couples with a disabled child are twice as likely as couples with
non-disabled children to be out of work: around 3% of mothers of
disabled children work full time and 13% part-time, compared to
more than 60% of mothers generally who are in work. This is one
of the lowest employment rates of any group in society[3]. Finding
suitable childcare is a key barrier to enabling parents of disabled
children to work.
Lesley said; “I’ve had to give up work to be able to support Ruby
in the way she needs. Being the sole-earner for our family puts a
lot of pressure on my husband and he has to work long hours,
which means he doesn’t get to spend a lot of time with the family.
It’s hard.”
“I have found it hard to get a job. I have been looking for shop
work mostly. A lot of companies don’t like to support people with a
disability as it means more training and more cost” one young
person with a learning disability said.
Young disabled people face significant barriers to employment and
so are often unable to break the cycle of poverty. Indeed, young
people with a learning disability are three times more likely not to
be in education, employment and training (NEET) by the age of 19
than young people without a learning disability.[5]
Childcare
The recent Parliamentary Inquiry into Childcare for disabled
children revealed that 86% of parent carers who responded to the
inquiry were paying £5 or more an hour[2]. 38% were paying £11£20 per hour and 5% were paying more than £30. For nondisabled children the average cost is £3.50 - £4.50 per hour. The
inquiry heard how many parent carers were forced to give up work
because they could not afford suitable childcare.
Benefits
Access to benefits is one thing that can help disabled children,
young people and their families redress the financial inequalities
they face. However, many families struggle to get the benefits they
need.
Disabled children, young people and their families have been
affected by changes to the benefits system over a number of
years. The recent Counting the Costs report showed that 33% of
families with disabled children feel they are worse off, with 46%
saying that they were worse off by £30 per week.[4] These
changes have caused anxiety, confusion and can have a
significant impact on their income, and quality of life.
Personal Independence Payments
Personal Independent Payments (PIP) have caused anxiety for
young disabled people, as they try to claim this key benefit that is
replacing Disability Living Allowance (DLA) for those over 16.
In a recent survey by EDCM, CLIC Sargent and Contact a Family:
 73% of young people ‘disagreed’ or ‘strongly disagreed’ that the
PIP application process was straightforward [6].
 82% found the application process stressful, and
 55% said that applying for PIP has had a negative impact on
their wellbeing.
The Counting the Costs report 2014 showed that 63% of people
surveyed were worried about the introduction of PIP.[4]
Laura is 23. She was diagnosed with bone cancer last year. Her
PIP forms were completed early December last year while she was
recovering in hospital and on morphine after an operation to
remove part of her pelvis. After more than six months of waiting
she finally received a decision in July 2014, which included an
enhanced rate and back-dated benefits. Laura said: “On a bad
day I felt I had no life. I was constantly waiting and chasing, my
whole life revolved around it. Things like food shopping - because
my mum was supporting both of us we had to really think about
what we were buying. We’d have to think about electricity and gas
too and how much to put on the meter. But it was vicious circle-
being poorly, it’s just not possible to cut back that much because it
would make things worse.”
Disability Living Allowance
Disability Living Allowance (DLA) is crucial to helping families to
meet the care and mobility costs they face when they have a
disabled child. The Welfare Reform Act 2012 gives the UK
Government the power to reform DLA for 0 to 16 year-olds, without
recourse to further primary legislation.
In the current financial climate, there is a risk that reform to DLA
might be seen as an opportunity to reduce spending on support for
disabled children and their families.
Attitudes
Many parents and young people feel that attitudes towards those
claiming benefits has created a social stigma and they are branded
as ‘scroungers’. Contact a Family found in their Counting the
Cost survey that parents felt there was a escalating climate of
hostility towards them, leading many to feel ashamed of getting the
support their child was entitled to. [7] Many had been subjected to
verbal discrimination implying they were abusing the benefits
system. This leaves many feeling isolated.
One parent of a boy with cerebal palsy told Contact a Family:
“Things are definitely getting worse. There has been a lot more
targeting around the whole idea that anyone who is claiming
disability benefits is essentially lying. People now feel they have
the right to question you to see if you are one of those ‘liars’ the
media constantly talk about. My son knows what people are
saying and is starting to understand that he is different and asks
me why people behave towards him in the way they do.”
Key issues
The next government must consider, right from the start, the
following issues:
 Disabled children and their families must be a priority group for
anti-poverty strategies.
 Disabled children and their families must receive adequate
financial support to help them meet the additional costs
associated with a disability. This support should enable disabled
children, young people and their families to lead a dignified life.
 The next Government should protect Disability Living Allowance
for 0 to 16 year-olds to at least current levels of support.
Social care:
“Supporting children should also mean supporting parents and
also the rest of the family. Short breaks should give families the
opportunity to be together and have a break from their caring role.”
Helen.
Social care is the support that enables disabled children and
young people to live independently and with dignity. It supports
them with day-to-day tasks such as washing, dressing and eating,
as well as with activities that keep them healthy and part of a
community, like meeting up with friends. Social care services for
children and young people can also include access to short
breaks, providing much needed breaks from caring for families.
Cuts
Despite their importance, social care services across the UK have
been the subject of local authority cuts. A recent survey by Scope
showed that:
 Two thirds (69%) of parents with disabled children have had a
problem accessing local services for their children over the past
3 years, with 8 in 10 parents admitting to feeling frustrated
(80%), stressed (78%), or exhausted (70%) as a result.
 9 in 10 parents (90%) are concerned about cuts to local
services that they or their families need. [8]
A Freedom of Information (FoI) request in May 2014 asked local
authorities the total budget they had available for services provided
to disabled children in 2012/13, 2013/14 and 2014/15. 52% of
local authorities reported budget reductions for 2014/15 which is
not surprising as we hear from many families who are facing cuts
to much-needed services.
The research also revealed that 41% of local authorities that
responded had also had to reduce spending in previous years.
Helen told us: “Maja was able to attend a special, weekly youth
club where she could also interact with mainstream peers which
was brilliant but has now been closed due to local authority cuts.”
Short breaks
Pauline says: “My daughter has some overnight care, usually two
nights a month if they are not cancelled and an afterschool visit
once a month. Supporting her can be a double-edged sword as the
assessment takes into account family support, so as a family we
receive less help.”
We know short breaks have been among the worst hit services by
local council spending cuts, despite them being a lifeline for
families who use them.
Mencap’s Breaking Point report (2013) showed:
 4 out of 10 family carers of children with a learning disability had
experienced cuts to short breaks services in the last 3 years.
 72% said they provide more than 15 hours of care a day.
Despite this, 35% of child family carers have never received a
short break.[9]
As a result, 8 out of 10 family carers are at breaking point because
of a lack of short breaks.
Children’s social care
Despite the benefits of being able to access the support they need,
many families are completely disenfranchised from the children’s
social care system.
Unlike the adult social care system, children’s social care eligibility
criteria are not nationally set, nor are they compulsory, meaning
that sometimes councils set their own specific criteria. However,
research conducted by Mencap in 2012 revealed that families are
usually left out of the councils’ processes for deciding who gets
social care services. While 65% of local authorities across England
have eligibility criteria in place for some of their children’s social
care services, only 11 consulted with service users and their
families when developing this criteria. This lack of transparency
can have a major impact not only on the quality of the eligibility
policy, but also how fairly it impacts on those directly affected by it.
Key issues
Right from the start the new government must consider:
 Disabled children, young people and their families must have
access to a joined-up social care system that is properly funded
to ensure that they have their needs met and are supported to
develop and maintain relationships and participate in their
community.
 Local authorities must have transparent eligibility criteria to
ensure that they are fair for disabled children, young people and
families who need support.
 When making decisions regarding budget cuts, services for
disabled children must be prioritised by local areas to ensure
disabled children, young people and their families are able to
access the services they need.
Healthcare
“My grandson’s GP has no knowledge of disabled children and
feels that the paediatrician should deal with everything. The GP
doesn’t want to know and doesn’t know where to start. When we
get to see a paediatrician it is usually fine but there are not enough
in our local area; one has gone on training for three months and
not been replaced, another one has become part-time so they are
really overstretched. Once it took 18 months to get an appointment
following hospital tests and that experience is not unusual even
though we are supposed to get six-monthly checks.” Pauline
Too many disabled children and young people have a poor
experience of the healthcare system. Parent carers often struggle
to find their way around the complex system to get the care their
child needs.
EDCM’s Disabled Children and Health Reform report has
established some of the key concerns of families with disabled
children in accessing health services:
 The inefficiency with which the current system operates - in
particular, poor coordination of appointments and care, poor
communication between different parts of the system, delays,
problems accessing equipment and incontinency services, and
the confusion with which services for children relate to services
for adults at the time young people make their transition to adult
life.
 The integration of services and service delivery - in particular,
the difficulty achieving continuity of care or a holistic approach
to treatment and support when many people, teams and
agencies are involved. Families also talked about being caught
between different agencies when funding is shared and of the
need for key worker services to help them negotiate a complex
system.
 Information - in particular, the lack of robust, accurate
information about disabled children and young people at local
and national level and the difficulty some families still
experience finding out which services are available in their local
area and how to access them. [10]
Child and Adolescent Mental Health Services
A Health Select Committee report on Child and Adolescent Mental
Health Services (CAMHS) [11] in November 2014 found poorly
commissioned services, that were underfunded and leading to
delays and inadequate services for children and young people with
mental health issues.
Furthermore, Young Minds found that:
 Two thirds of local authorities in England have reduced their
CAMHS budget since 2010
 Only 4% of young adults reported a good transition from
CAMHS to adult Mental Health Services (AMHS) [12]
Pauline told us: “We were referred to our local CAMHS but they
said it was nothing to do with them as he can’t talk. We went to an
educational psychologist but we were told that they only dealt with
young people over 18. Eventually the paediatrician just told us she
didn’t know what else to do.”
Wheelchair services
Wheelchair services are vital to enabled disabled children and
young people to get the support they need to gain and maintain
their independence. However:
 Children in England with a neuromuscular condition wait an
average of 20 weeks to receive a powered wheelchair.[13]
 Children were waiting over 51 weeks for manual wheelchairs.
[14]
Helen explained: “A huge problem has been our experience with
wheelchair services. By the age of 2 ½ Maja had outgrown all the
buggies available in shops but without a diagnosis we could not
get funding for a specially adapted buggy. Eventually I was able to
do my own research into funding and special needs buggies and
we received funding for a 3 wheel buggy that was much more
stable, practical, comfortable, and had a rain cover.”
Parent and carer health and wellbeing
Parents and other family carers often experience health issues of
their own because of a lack of support for disabled children,
including stress, anxiety and sleep deprivation.
“After 14 years without a decent night’s sleep I don’t know how
much longer I can carry on.”
Support and services for disabled children with sleep issues are
often very limited. The Family Fund in its 2013 report Tired All the
Time, which surveyed 2000 families, found that:
 93% stay up in the night regularly with their children.
 49% say their health has been affected due to lack of sleep.
 22% say their lack of sleep has affected relationships.
The resulting impact can be the cause of families experiencing
greater stress, poorer health and, in some cases, cause the
breakdown of the entire family.[15]
This can also have a major impact on disabled children and young
people’s wellbeing including their mental wellbeing. As a result, an
approach to ensuring the health of disabled children and young
people should necessarily consider the health of their wider family
as well.
Key issues
Right from the start, the new government must ensure:
 Health and Wellbeing Boards keep detailed information on
disabled children and young people living in their area, and
provide public information on how they plan to meet their needs.
 Health service commissioners, Health and Wellbeing Boards
and providers prioritise the integration of services between
health, social care, education and other services, so that
services work for disabled children, young people and their
families.
Conclusion: a strategy for the whole child and family
The stories and statistics that have been shared in this report show
the day-to-day challenges that disabled children, young people
and their families face. They illustrate the impact that policy and
service delivery can have on their lives.
The Children and Families Act 2014 [16] has built on the work of
successive governments to provide the legislative framework that
can help improve services for disabled children and young people.
This has been complemented by the Care Act 2014 [17], which
has established the principle that family carers for disabled adults
must get the recognition that they need.
These new pieces of legislation recognise the importance of
getting the interaction between different services in disabled
children and young people’s lives right. They also recognise the
aspirations that disabled children, young people and their families
have for independence and fulfilment.
We know that when disabled children and young people get the
support they need and the opportunities they want the results can
be positive for both the child and their family.
Lesley told us: “Ruby was going to a local special needs school,
but it specialised in learning difficulties, especially autism, and
wasn’t right for Ruby. With Sense’s help, and against the advice of
our local authority, we got her a place at the Frank Barnes School
for Deaf Children, where she’s getting the right kind of support and
learning to sign.”
Sam told us about her positive experiences of a number of short
break and other services: “I regularly visit an outdoor pursuits
centre called Bendrigg Lodge. I particularly love the accessible
climbing wall and zip wires. One of the best things, though, is that I
can go with my family and friends. I don’t feel separated out just to
do something I enjoy. I’m involved in the branch of 1Voice, a
charitable group for young communication aid users. We have a
great time going bowling and eating out. It’s a laugh, chatting with
other communication aid users, and sometimes it can even be
useful.”
EDCM and its members call on the next Government to reflect on
the challenges we have set out, as well as the opportunities that
exist for improving the lives of disabled children, young people and
their families, as a matter of urgency.
A cross-departmental strategy for disabled children, young people
and families would enable the next Government to take a much
more holistic and proactive approach to developing policy, and to
make real, positive change happen.
References:
[1] Dobson, B. & Middleton, S. (1998), Paying to Care: The cost of
childhood disability, York: YPS. Also Dobson, B. et.al. (2001), The
Impact of Childhood Disability on Family Life, York: YPS
[2] Report into Parliamentary Inquiry into Childcare for disabled
children 2014
http://www.edcm.org.uk/media/155556/parliamentary-inquiry-intochildcare-web.pdf
[3] Contact a Family, poverty webpage
[4] Contact a Family. Counting the Cost 2014
http://www.cafamily.org.uk/media/805120/counting_the_costs_201
4_uk_report.pdf
[5]One in Ten - key messages from policy, research and practice
about young people who are NEET, Tunnard et al, 2009
[6] CLIC Sargent, Contact a Family, EDCM PIP survey August
2014
[7] Contact a Family. Counting the Costs 2012
http://www.cafamily.org.uk/media/381221/counting_the_costs_201
2_full_report.pdf
[8] https://www.scope.org.uk/media/press-releases/sept2014/parents-disabled-children-battle-support
[9] https://www.mencap.org.uk/getinvolved/campaigns/successes/protecting-short-breaks-services
[10] EDCM Disabled Children and health reforms
http://www.edcm.org.uk/resources/edcm-campaignbriefings/disabled-children-and-health-reform-questions,challenges-and-opportunities
[11]
http://www.publications.parliament.uk/pa/cm201415/cmselect/cmh
ealth/342/34202.htm
[12]
http://www.youngminds.org.uk/about/our_campaigns/cuts_to_cam
hs_services
[13] http://www.musculardystrophy.org/assets/0004/6094/Get_Moving_2013.pdf
[14]
http://www.cqc.org.uk/sites/default/files/documents/health_care_for
_disabled_children.pdf
[15]Tired all the time - the impact of sleep difficulties on families of
disabled children 2013
http://www.familyfund.org.uk/sites/default/files/FF_Tired_all_the_Ti
me_Report.pdf
[16] http://www.legislation.gov.uk/ukpga/2014/6/contents/enacted
[17] http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted
We asked disabled children, young people and their families and
here is what they told us:
 “To recognise Carers more. £60 a week caring for someone
24/7 is appalling. If they continue with carers at £60 a week to
at least give eye tests, prescriptions and dental at a very
reduced rate if not free.”
 “Stop the cuts on children's services.”
 “Give more support to undiagnosed children.”
 “Listen to parents and carers of special needs children.”
 “Nationally funded nursing care packages for children at the
extreme who need high cost home care nursing packages.
Currently parents are treated appallingly by some
commissioners due to the cost of their child's care.”
 “I would like not to have to fight for services that my children
deserve which in turn then penalises me for actually having a
job and having to fight for the services I need to continue to
work.”
 “To be able to listen to people with disabilities.”
 “Provide more day-to-day support to help me succeed and
outside of college to lead an independent life.”
 “Support people with learning disabilities to get jobs by working
directly with employers and creating opportunities for people
like me.”