EDCM-Right from the start

RIGHT FROM THE START
WHAT WE WANT FROM THE NEXT GOVERNMENT
EVERY DISABLED CHILD MATTERSMANIFESTO
2014–15
What we want from the
next Government
Right from
the start

2014–15
2014–15
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.
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.
Recommendationsintroduction
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.
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.
21

EVERY DISABLED CHILD MATTERS EVERY DISABLED CHILD MATTERSMANIFESTO
2014–15
MANIFESTO
2014–15
Meet the families,
children young people
who have shared their experiences in this report
43
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 paediatrician 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.”

2014–15
MANIFESTO
2014–15
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 non-
disabled 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.
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]
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.
Lack of money can be a huge pressure and additional
worry for the families of disabled children and for young
disabled people.
6
Poverty financial wellbeing5
3%
of mothers
of disabled
children work
full time
4in10
disabled
children
are living
in poverty
31%
are going
without food
86%
of parent
carers pay
£5 or more
an hour for
childcare
33%
of families
feel they are
worse off due
to benefit
system
changes
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.
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]
One 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.”
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.”
One young person with a
learning disability said:
“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.”

2014–15
MANIFESTO
2014–15
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.
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.
87
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.
One parent of a boy with cerebral
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.”
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.”

2014–15
MANIFESTO
2014–15
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.
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 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.
Short breaks
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.
Social care is the support that enables disabled children
and young people to live independently and with dignity.
10
SOCIAL CARE9
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]
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.
69%
of parents
have had
problems
accessing
local services
in the past
3 years
52%
of local
authorities
reported
budget cuts
for 2014/15
9in10
parents are
concerned
about cuts to
local services
72%
of families
carers
provide
more than
15 hours of
care a day
78%
of parents
admitted
feeling
stressed
8in10
family
carers are
at breaking
point
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.
Helen said:
“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 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.”
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.”

2014–15
MANIFESTO
2014–15
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.
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.
Wheelchair services
Wheelchair services are vital to enable
disabled children and young people
to get the support they need to gain
and maintain their independence.
12
healthCARE11
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]
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]
2/3
of local
authorities
have reduced
their CAMHS
budget
since 2010
20
weeks
average
waiting
time for a
powered
wheelchair
4%
of young
adults
reported
a good
transition
from CAMHS
to AMHS
51
weeks
average
waiting time
for a manual
wheelchair
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]
Pauline says:
“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 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.”
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.”

2014–15
MANIFESTO
2014–15
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.
Support and services for disabled
children with sleep issues are often
very limited.
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.
One carer said:
“After 14 years without a decent
night’s sleep I don’t know how
much longer I can carry on.”
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.”
The Family Fund in its 2013 report
Tired All the Time, which surveyed
2,000 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
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.
A strategy for the whole child and family
Conclusion
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.
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.
93%
stay up
at night
regularly
with their
children
49%
say their
health
has been
affected
due to lack
of sleep
1413
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.”

2014–15
MANIFESTO
2014–15
We asked disabled children, young people and their
families what they want for the future and from
the next government and here is what they told us:
15
“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.”
“Provide more day-to-day
support to help me succeed
and outside of college to lead
an independent life.”
“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.”
“Stop the cuts on children’s
services.”
“Give more support to
undiagnosed children.”
“To be able to listen to
people with disabilities.”
“Listen to parents and carers
of special needs children.”
16
“Support people with
learning disabilities to get
jobs by working directly
with employers and creating
opportunities for people
like me.”
“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.”

2014–15
References17
[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 www.edcm.org.uk/
media/155556/parliamentary-inquiry-
into-childcare-web.pdf
[3] Contact a Family, poverty webpage
[4] Contact a Family. Counting the
Cost 2014 www.cafamily.org.uk/
media/805120/counting_the_
costs_2014_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 www.cafamily.org.uk/
media/381221/counting_the_
costs_2012_full_report.pdf
[8] www.scope.org.uk/media/press-
releases/sept-2014/parents-disabled-
children-battle-support
[9] www.mencap.org.uk/get-involved/
campaigns/successes/protecting-
short-breaks-services
[10] EDCM Disabled Children and
health reforms www.edcm.org.uk/
resources/edcm-campaign-briefings/
disabled-children-and-health-
reform-questions,-challenges-and-
opportunities
[11] www.publications.parliament.uk/pa/
cm201415/cmselect/
cmhealth/342/34202.htm
[12] www.youngminds.org.uk/about/
our_campaigns/cuts_to_camhs_
services
[13] www.muscular-dystrophy.org/
assets/0004/6094/Get_
Moving_2013.pdf
[14] 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
www.familyfund.org.uk/sites/default/
files/FF_Tired_all_the_Time_Report.
pdf
[16] www.legislation.gov.uk/
ukpga/2014/6/contents/enacted
[17] www.legislation.gov.uk/
ukpga/2014/23/contents/enacted
EDCM is a consortium campaign run by four national organisations working with disabled
children and their families – Contact a Family, the Council for DisabledChildren, Mencap
and the Special Educational Consortium.
Every Disabled Child Matters is based at the Council for Disabled Children, which is hosted
by National Children’s Bureau.
Registered charity no. 258825. Registered in England and Wales No. 952717.
Registered Office: 8 Wakley Street, London EC1V 7QE. A Company Limited by Guarantee.

2014–15

EDCM-Right from the start

Recommended

Recommended

More Related Content

What's hot

What's hot (19)

Similar to EDCM-Right from the start

Similar to EDCM-Right from the start (20)

EDCM-Right from the start