Memorandum submitted by Every Disabled
Child Matters (EDCM)
EDCM is the campaign to get
rights and justice for every disabled child. The campaign has
28,000 individual supporters and a network of supporter organisations
across the disability and children's sectors.
While EDCM welcomes the intention
of the Children and Young Persons Bill to improve outcomes for
looked-after children, we have significant concerns that the Bill
does not adequately address the specific needs of disabled children
and young people placed away from home.
EDCM strongly believes the Bill
should include workable provisions to ensure looked-after status
is given to disabled children in long-term residential placements
who need it. Currently young disabled people can be in residential
placements far from home for 52 weeks of the year, with little
or no parental contact, without the protection that looked-after
The Bill is a key opportunity
to ensure families with disabled children get the right support
to allow them to continue caring for their children at home, rather
than reach a situation where their children are placed in unnecessary
and expensive care placements far from home. Our proposal is that
a right to short breaks for those families most in need would
build upon the Government's recent investment in short break services,
and keep more children with their families and out of the care
EDCM is also calling for a progressive
duty to plan local provision suitable for disabled children to
be included within the Bill. This would ensure a shift in local
planning, away from routinely placing disabled children far from
home in expensive out-of-authority placements, towards developing
local provision to meet local need.
EDCM supports calls from The
Children's Society and Voice to ensure the provision of advocacy
services to children in care, to ensure their views are heard
in decisions about their lives. This is particularly crucial for
young disabled people, who may face additional barriers to making
their views known as a result of communication impairments.
EDCM believes that access to
essential communication aids should be a basic right for young
disabled people who are looked-after. There is evidence that currently
many disabled young people are missing out on these essential
Our submission supports Scope's calls for the Bill to secure this
The Government has recognised
the need to improve services and support for families with disabled
children through investing £430 million through the Aiming
High for Disabled Children review. However, more needs to
be done to ensure that this investment delivers for young disabled
people in, or on the edge of, care. Our submission encourages
the Children and Young Persons Bill to dovetail with the Aiming
High commitments, to ensure maximum benefit for all disabled
children and young people wherever they live, and maximum returns
on the Government's investment.
1. Every Disabled Child Matters (EDCM) is
the campaign to get rights and justice for every disabled child.
We want all disabled children and their families to have the right
to the services and support they need to live ordinary lives.
The campaign has 28,000 individual supporters and a network of
supporter organisations across the disability and children's sectors,
many of whom provide support to disabled young people in care.
2. The campaign is run by four leading organisations
working with disabled children and their familiesContact
a Family, Council for Disabled Children, Mencap and the Special
Educational Consortium. We challenge politicians and policy-makers
to make good on the Government's commitment that every child matters.
3. EDCM is grateful for the opportunity
to submit evidence to the Committee on the critical issue of looked-after
children, particularly as disabled children make up a large proportion
of the care population. We would further appreciate the opportunity
to give oral evidence to the Committee, if this would be of assistance.
4. Research shows that disabled children
are more vulnerable to abuse than other children,
and are more likely to be placed in care at crisis point, further
away from home than other children.
5. These factors all increase safeguarding
concerns for disabled young people placed away from home. These
concerns are heightened further by the difficulty that some young
disabled people have in accessing the communication aids they
need to make their wishes known.
6. This submission focuses on our proposals
to ensure the Children and Young Persons Bill fulfils its potential
to ensure better outcomes and increased safety for young disabled
people in, or on the edge of, care.
7. EDCM welcomes the improved framework
that the Bill will create for those children that have looked-after
children (LAC) status. However, we have serious concerns that
this has the potential to further disadvantage disabled children
and young people who are living a long way from home, but do not
have the protection of LAC status.
8. Throughout the Care Matters consultation
process, the Council for Disabled Children (one of the key partners
in EDCM) has been raising serious concerns about young people
in residential schools or long-term health placements, who may
be placed far from home for up to 52 weeks of the year, without
the protection of looked-after status. We believe these children
need and deserve the protection and support of LAC status. The
2005 review of disabled children in residential placements recommended
more consistent application of "looked-after status for disabled
children spending long periods in residential placements, particularly
where these are far from home".
9. We are pleased that the Bill recognises
the vulnerability of these young people, but we have grave concerns
that the measures outlined to address this vulnerability will
not deliver on a practical level. Clause 16, which proposes a
visit to young people in this situation from the home authority,
depends on sections 85/86 of the Children Act 1989, which require
that the home authority is notified of children in long-term health
or education placements. There is government research to suggest
that many local authority officers are unaware of the existing
provisions in section 85/86.
We welcome the attempt to provide a safety net for these children
who are not currently offered any protection or support, but our
concern is that whilst Sections 85/6 are not used, this attempt
will have no effect.
10. More fundamentally still, EDCM believes
that such a visit would provide insufficient protection and support
for a disabled child placed a long way from home for 52 weeks
of the year, with little or no contact from their family. The
right approach is to ensure that these children are protected
by looked-after children status.
11. We appreciate the assurances given by
Lord Adonis at Committee stage in the House of Lords that most
children in long-term placements should be looked-after. We agree
that the best way to achieve this is to create a flexible framework
that can respond to individual needs. However, it is crucial that
this framework ensures that where a young disabled person is placed
a long way from home, their safety and well-being are given full
consideration by the placing local authority. In some good practice
local authorities this is already being done, in partnership with
parents, as part of a children in need assessment.
12. We propose an amendment to the Bill
that seeks to ensure that disabled children in residential schools
that do not have regular contact with their families receive the
protection of LAC status. Our amendment provides the flexibility
to ensure that where the young person enjoys ongoing contact with
their family, the local authority is not required to consider
the young person as looked-after.
13. EDCM would welcome any amendment to
the Bill that would ensure local authorities consider whether
the protection of looked-after status is necessary when disabled
children are placed away from home.
14. Parents tell us that regular, reliable
and appropriate short breaks help to keep disabled children with
their families, and out of the care system. Families who get breaks
describe them as essential in helping them to sustain their caring
I am fortunate to finally receive respite.
What a wonderful relief. One night a week we can be a normal family.
Go to the cinema, pub or for a meal or just be. No strict routine,
no bathtime, no struggle to medicate, no getting up four or five
times in the night. Bliss.
15. Breaks can be provided in a variety
of ways: within the family home, through accessing community facilities
or by the child staying overnight with another family or in a
16. The Children and Young Persons Bill
provides a critical opportunity to remedy the gap in the legal
framework for families with disabled children, and keep more disabled
children with their families, and out of the care system.
17. EDCM has proposed an amendment to the
Bill that would give those families most in need a right to a
short break. Following an assessment under the Carers and Disabled
Children Act 2000, it would impose a specific duty on local authorities
to provide short breaks for families whose caring role is, or
is likely to become `unsustainable'.
18. The amendment is proposed in the context
of a new commitment to disabled children and their families by
Government, following the publication of Aiming High for Disabled
Children: Better Support for Families. This report, and subsequent
announcements, has resulted in an additional £370 million
to deliver a step change in the provision of short break services
from 2008-11. EDCM welcomes this vitally important investment,
but is clear that families also need and deserve a legal minimum
entitlement to breaks, to prevent unacceptable local variations
in service provision.
19. To address any concerns about inflating
the population of looked-after children, EDCM wants to reduce
the number of disabled children who are receiving short breaks
but who remain resident with their families who are classed as
looked-after. EDCM wants Government to clarify in guidance the
distinction between short breaks as a regular, planned family
support mechanism, where full parental responsibility is retained,
and when short breaks are effectively a family placement mechanism
in crisis or emergency situations where looked-after children
status is needed.
20. Families reach crisis point not because
they are carers, but because they are forced to care without any
support. With the right kind of short breaks, the vast majority
of families will be able to continue to support and care for their
disabled children. Disabled children deserveand getas
much love and affection from their families as other children.
This amendment aims to create the legal right to support for families
to sustain their caring rolesupport which makes sense both
morally and financially.
21. We appreciated the detailed response
from the Minister at Committee stage on this issue, and his assurances
that he is "absolutely committed to seeing this huge investment
of public funds lead to a transformation in short break services
and to a consistency of provision between local authority areas".
(Hansard, 16 January 2008 : Column GC542)
22. However, EDCM believes that this transformation
and consistency of provision can best be achieved through a minimum
entitlement to short breaks for those families that need them
most. In order for this transformation to last beyond the three
years of funding, we must send a strong message to local authorities
that providing short breaks to families on the edge of care is
not negotiable. We must also ensure that families who are struggling
to cope can feel confident that they will receive this crucial
support before they reach breaking point.
23. We whole-heartedly agree with the Minister
that what matters is the reality on the ground. That is certainly
what matters to parents of severely disabled children who are
at breaking point, and to those disabled children and young people
that are now living in care because that low level support was
not provided to their families at the critical time. The reality
on the ground is that without a legal right to a break, the families
that are most in need may continue to miss out on the services
24. Therefore, EDCM would welcome any amendment
to the Bill that would ensure the transformation of short break
services anticipated in Aiming High for Disabled Children is embedded
25. EDCM welcomes provisions within the
Bill to increase the number of looked-after children placed locally
to their home authority. This has the potential to transform the
experiences of disabled children and young people placed away
from home, the majority of whom are currently placed a great distance
from their families.
26. However, we are concerned that local
authorities may rely on the provision in the Bill not to place
a child locally if there is no accommodation consistent with their
welfare. This would have the effect of continuing current trends
where disabled children and young people are placed substantial
distances from their family homes. This distance increases safeguarding
concerns and makes it very difficult, if not impossible, for family
and friends to stay in touch with the disabled child or young
person, due to the higher cost implications of visiting them.
It also adds to the sense of isolation felt by many young disabled
people, particularly if their communication support needs mean
that staff may struggle to communicate effectively with them.
27. EDCM have proposed an amendment which
seeks to impose a progressive duty on local authorities to demonstrate
that they are building capacity for future placements for children
and young people, including those with disabilities, within the
local authority area.
28. The Bill intends to improve outcomes
for young people in care by minimising disruption and isolation,
and keeping them in their home communities where that is consistent
with their welfare. Our concern is that as the Bill currently
stands, the most vulnerable looked-after children will continue
to miss out on these improved outcomes for the foreseeable future,
as they will continue to be placed a long way from home.
29. EDCM challenges the assumption that
many disabled young people have needs that are too complex to
be met locally. There are a number of good examples of innovative
short break services that cater for young people with very complex
health and behavioural needs within their local communities. We
suggest that learning from these examples, and in particular from
the short break pathfinder areas announced as part of the "Aiming
High for Disabled Children" programme, can be used to support
local authorities in increasing local provision for looked-after
children with complex needs.
30. We propose that local and regional commissioners
should monitor their out-of-authority placements for young disabled
people, and be required to plan future services to meet that need
within the local region wherever possible. Local authorities should
move away from the automatic assumption that the majority of young
disabled people need to be placed far from home, and look at innovative
regional commissioning to ensure that they can stay in their communities
where that is in the best interests of the young person.
31. The last 30 years have seen a cultural
shift in our attitudes to residential provision for disabled adults
who were considered to have needs too complex to be met in their
local community. We want to see the same cultural shift in our
attitudes to the placement of young disabled people in care.
32. EDCM supports the statement issued by
The Children's Society and Voice on the need for advocacy at key
points for all looked-after children and young people. The Bill's
proposals on Independent Reviewing Officers and Independent Visitors,
while welcome, do not replace the need for independent advocacy
to help children represent their wishes and feelings effectively.
33. Independent advocacy is crucial to improving
the well-being of disabled young people in the care system in
particular. Disabled young people are more likely to have difficulty
getting their views across, and are more vulnerable to abuse than
their non-disabled peers. There is evidence that existing child
protection procedures and processes do not effectively safeguard
34. The Prime Minister's Strategy Unit report
Improving life chances of disabled people recognises the
particular importance of advocacy in ensuring that disabled young
people have more choice and control in their lives (recommendation
6.2). If the intention of this Bill is to improve experiences
and outcomes for young people in care, there can be no more powerful
tool to achieve this than giving young people the support they
need to get their views across and have their rights respected.
35. EDCM welcomes any amendment to the Bill
which would give disabled young people access to an independent
advocate at points where key decisions are being taken about their
A RIGHT TO
36. EDCM supports Scope's position that
access to essential communication aids should be a basic right
for young disabled people who are looked-after. Without these
aids, it becomes impossible for the local authority to fulfil
its duty to seek the views of young people with communication
support needs. As with advocacy, IROs and visitors will not be
effective unless disabled children and young people have a right
to the aids and equipment they need to communicate their wishes
37. EDCM welcomes the measures within the
Children and Young Persons Bill to improve outcomes for young
people in care. We also welcome the new political priority given
to disabled children, and the funding commitments made by government
in Aiming High for Disabled Children. However, in order
to maximize the beneficial impact of these new initiatives, we
need to see a clear read-across between them. Disabled children
and young people in, or on the edge of, care face profound and
multiple social exclusion and increased safeguarding challenges.
Action against our recommendations on looked-after status, short
breaks, increasing local provision, access to advocacy, and rights
to essential communication aids, will improve the safety and life
chances of these young people, and help deliver on the Government's
commitment that Every Child Matters.
27 Scope, (2007) No Voice, No Choice: disabled people's
experiences of accessing communication aids. Back
NSPCC (2003) It doesn't happen to disabled children: Report
of a National Working Group on Child Protection and Disability. Back
Pinney (2005), op cit, p 50. Back
Pinney (2005), op cit, p 50. Back
Pinney (2005), op cit. Back
NSPCC (2003) It doesn't happen to disabled children: Report
of a National Working Group on Child Protection and Disability. Back