Written evidence from The Disabled Children’s Partnership (CFA0067)

HOUSE OF LORDS CHILDREN AND FAMILIES ACT 2014 SELECT COMMITTEE INQURY

Response to The House of Lords Select Committee on the Children and Families Act 2014 Call for Evidence from the Disabled Children’s Partnership

About Us

1.              The Disabled Children’s Partnership is a coalition of more than 100 organisations[1], backed by a network of 10,000 parent carers and other supporters, who have come together to campaign for better health and social care support for disabled children and their families.
2.              Our evidence focuses on Part 3 of the Children and Families Act and section 97 (parent carer assessments).

The legislation

3.              In general, we consider that the legislative framework for special educational needs and disability set out in part 3 of the Children and Families Act is the right one, particularly when viewed through an education lens.  The legislation retained the key rights and protections for children and families contained in the 1996 Act, and made important enhancements, including
1.              Applying them to young people in further education outside of school, up to the age of 25
2.              More strongly binding in health and social care, including through joint commissioning duties and the duty under section 42, and through the extended powers of the Tribunal trial
3.               Extending the coverage of the legislation to all disabled children
4.              Giving a specific legal right for parent carers to an assessment of their needs.
5.              Further embedding co-production
4.              This does not mean that there is no scope for further legal reform.  In particular, the law on social care for disabled children is now very outdated (and dates to the 1970 Chronically Sick and Disabled Persons Act).  The 2014 Care Act rationalised the legal framework for social care for adults, but no similar steps have been taken for disabled children.  We have provided advice to the Independent Review of Children’s Social Care on options for legal change and consider this a potential issue for consideration by the Law Commission.

Implementation

5.              Unfortunately, the reality that parent carers and disabled children face today shows that the legislation and associated reforms have not delivered as attended.  Part 3 of the Children and Families Act followed the 2011 Green Paper Support and Aspiration[2].  The forward to that Green Paper said that

Successive reports … have described a system where parents feel they have to battle for the support they need, where they are passed from pillar to post, and where bureaucracy and frustration face them at every step. [2011 Green Paper]

6.              This year, the government has published a new Green Paper – Right Support, Right Place, Right Time[3] – which includes a remarkably similar analysis of the problems with the system, which is a sad indictment of the failure of the 2014 reform programme to deliver the change envisaged and required.

Too many parents are navigating an adversarial system, and face difficulty and delay in accessing support for their child. [2022 Green Paper]

7.              A survey we carried out in 2019[4] found that

•                  only (4%) of parent carers feel they get the right support to safely care for their disabled children
•                  more than half (54%) of parent carers have been treated by a GP for depression, anxiety or stress (including suicidal thoughts)
•                  53% of parent carers have been forced to give up a paid job to care for their disabled child
•                  40% of parent carers have experienced relationship breakdown with a partner since diagnosis. 64% of those say a lack of support had a major impact on the breakdown of a relationship
•                  more than a third (37%) of parent carers say their disabled child has missed school or college because the staff or services are not available to support them
•                  a third (33%) of parent carers say their disabled child has been in unnecessary extra pain because the right equipment, doctor or health service has not been available.

8.              Sadly, the pandemic has only exacerbated these problems.  Our most recent research[5], carried out at the start of 2022 and published this month, found that

•                  A third of disabled children are experiencing more pain as their support is delayed or reduced.
•                  2 in 3 disabled children have seen their emotional or mental health deteriorate due to not getting the right support.  
•                  43% of families with disabled children have waited over a year to get respite care they deserve. 
•                  3 in 5 parent carers have seen their relationships with friends and family suffer due to lack of support. 
•                  Half of siblings of disabled children are lonely because their family is not getting the right support. 
•                  Nearly 70% of parent carers of disabled children have seen their physical health deteriorate because the right support was not there.

Why have the 2014 reforms not delivered as intended?

9.              This, of course, begs the question why have the reforms not delivered as expected? There is not a straightforward answer to that, but we would identify several inter-linked factors

•                  Lack of priority given to disabled children, and the competing demands of other parts of the system
•                  Unclear accountability, and unclear responsibility between different agencies.
•                  Funding

Lack of priority/competing demands

10.         Across all parts of the system, both a lack of priority for disabled children, and a lack of understanding of the impact of other policies on disabled children, have a detrimental impact on those children and their families. For example, changes to the curriculum, assessment, behaviour policies and accountability in schools can make them a hostile environment for many disabled children. This is reflected in exclusion data, which shows that rates of suspension and permanent exclusion are far higher for children with special educational needs than other children. In social care, an understandable focus on safeguarding and looked after children, mean that support for families with disabled children is often de-prioritised and only available when families hit crisis points or safeguarding concerns arise.

Accountability/responsibility

11.         Parents consistently tell us that a lack of clarity over which service is responsible leads to them being passed on from one service to another without anyone taking responsibility for providing the support they need. They also tell us that the biggest barrier they face to getting the support they need is local authorities and other statutory agencies not following the law. This is reflected in decisions by the SEND Tribunal, the vast majority of which find in favour of parents.  We have also seen little evidence that two of the most important legal changes in the Act – the duty on health bodies under section 42 and the right to a parent carer assessment – are widely understood or acted upon.

Funding

12.         The 2022 SEND Green Paper places a great emphasis on the increases in the High Needs Funding budget.  It does not, however, reference the reductions to support disabled children and their families in other areas, including mainstream education, health and social care budgets. 
13.         In October 2021, we released an updated piece of economic analysis[6] with the charity Scope which exposed the continued funding gap in disabled children’s health and social care. This shows that the funding gap for disabled children’s health and social care is £2.1 billion – an increase of over £500 million since our last calculation in 2016-17.  This includes a £573 million funding gap in disabled children’s social care, and a £1.5 billion gap in disabled children’s NHS spending. 
14.         Addressing these longstanding issues with the system are reflected in our “Three Pillars”[7] - our overarching call for reform to the system to support disabled children and their families.

Current government reform proposals

15.         We recognise and agree with a lot of the description of the problems in disabled children’s services in the recent Green Paper. However, we are very concerned that some of the proposals will restrict families with disabled children from getting services and create extra barriers in an already burdensome system.  
16.         In particular, we are concerned by the proposals to: 

•                  Only let families pick a school from a pre-defined list – this could limit choice and prevent a young person from accessing the school that is best for them. 
•                  Decide the levels of support disabled children get from a national banding system which may restrict access to support – it should be based on individual need, as was laid out in the Children and Families Act 2014. 
•                  Make mediation mandatory before allowing families to go to Tribunal – this adds an extra step and could make it harder for families to access tribunals. 

17.         Finally, the Green Paper does not answer the biggest issue for many families – how are councils, schools, the health service and others going to be held to account if they do not meet their legal duties?

Disabled Children’s Partnership

April 2022

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