Select Committee on Children, Schools and Families Written Evidence


Memorandum submitted by Every Disabled Child Matters (EDCM)

SUMMARY

    —    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 status offers.

    —    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 system.

    —    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 aids.[27] Our submission supports Scope's calls for the Bill to secure this much-needed right.

    —    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.

INTRODUCTION

  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 families—Contact 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,[28] and are more likely to be placed in care at crisis point, further away from home than other children.[29]

  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.

LOOKED-AFTER STATUS FOR YOUNG PEOPLE IN LONG-TERM PLACEMENTS

  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".[30]

  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.[31] 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.

CARE PREVENTION THROUGH SHORT BREAKS

  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 role:

    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 residential setting.

  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 deserve—and get—as 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 role—support 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 they need.

  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 and sustained.

DEVELOPING LOCAL PROVISION FOR DISABLED CHILDREN IN CARE

  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.

THE NEED FOR INDEPENDENT ADVOCACY

  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 them.[32]

  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 lives.

A RIGHT TO ASSISTIVE AND AUGMENTATIVE COMMUNICATION SUPPORT

  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 and feelings.

CONCLUSION

  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.

February 2008











27   Scope, (2007) No Voice, No Choice: disabled people's experiences of accessing communication aidsBack

28   NSPCC (2003) It doesn't happen to disabled children: Report of a National Working Group on Child Protection and DisabilityBack

29   Pinney (2005), op cit, p 50. Back

30   Pinney (2005), op cit, p 50. Back

31   Pinney (2005), op citBack

32   NSPCC (2003) It doesn't happen to disabled children: Report of a National Working Group on Child Protection and DisabilityBack


 
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