Children and Families Bill

Memorandum submitted by Together for Short Lives (CF 50)

About Together for Short Lives

1. Together for Short Lives is the leading charity for UK children’s palliative care. We support everyone who loves and cares for children with life-limiting and life-threatening conditions - families, professionals and services, including all of the UK’s children’s hospices. Our work helps to ensure that children can get the best possible care, wherever they are, and whenever they need it.

2. There are around 39,000 children and young people in England with life-limiting and life-threatening conditions, which mean they may require palliative care. Between them, they have a several hundred different conditions - some are well known, such as Duchenne Muscular Dystrophy and cancer; others are rarer and have no name until recognised in an individual child. Many children have a range of different needs and require complex, individualised health interventions to manage their conditions. Many also need additional social care and education support.

3. Together for Short Lives is a member of the Every Disabled Child Matters (EDCM) and Special Educational Consortium (SEC) Parliamentary Group.


4. This memorandum relates to part 3 of the Bill: ‘Children and Young People in England with Special Educational Needs’.

5. We know from evidence that a disjointed system of care presents many challenges for families of children with life-limiting conditions. These families routinely deal with over 30 professionals from education, social care, health and other services. Communication between agencies is generally inadequate, leaving families burdened with the stress of navigating their way through an uncoordinated system.

6. This experience is common among families of disabled children. However, for families whose children’s lives are likely to be short, time wasted navigating through the system in this way can be particularly distressing. As one parent said at a recent event: "It’s a minefield and you get frightened going through it. Services don’t join up and people don’t explain things to you. They don’t tell you what all the services actually do. By the time I had made it all fit together my child had passed away - that makes me sad that he could have had so much more out of life".

7. All the evidence suggests that the best outcomes for children with life-limiting conditions and families are achieved when there is effective partnership working between parents and services and care is co-ordinated around the needs of the family.

8. The original policy proposals included in the 2011 Green Paper Support and aspiration: A new approach to special educational needs and disability - A consultation set out a vision of improved outcomes for children and young people who are disabled or have SEN in which the "adversarial nature of the system for families" would be minimised - potentially addressing many of the concerns we regularly hear about from parents and families of disabled children.

9. Together for Short Lives strongly supports the aspirations of the Bill, particularly those aimed at better integrating health, education and social care assessment; better integrating delivery for disabled children; and improving joint commissioning between local agencies. We also welcome the Government’s decision to act on some of our recommendations for realising these aspirations following their publication of draft SEND clauses in 2012.

10. We do, however, retain reservations about some important aspects of the Bill. The Green Paper offered a once-in-a-generation opportunity to join-up assessments and services for all disabled children. However, the draft SEND clauses which followed focused too heavily on education related services and did not provide an adequate framework to draw health and social care services into the system of support for children with SEN. The House of Commons Education Select Committee recommended that the Government broaden the scope of the clauses to reflect the original aspirations of the Green Paper. Ministers have not taken the committee’s advice - as a result, it is unlikely that the Bill will bring about the integrated assessments and care that the Government has promised.

11. Unless this is addressed, the Bill will simply replicate and reinforce the fragmentation in the current system. Research cited by EDCM and SEC has estimated that in the region of 25% of disabled children may not have SEN. Similarly, there are children who have specific health conditions, such as cancer, who would significantly benefit from a single plan and jointly commissioned services, but who would not meet the requirements of an SEN statement.

12. At a time when local authority budgets are under increasing pressure, we seek assurance from the Government that they recognise the impact of local cuts on SEND services. Local authorities will need considerable support and resources to ensure these reforms can make a practical difference at a local level.

13. To ensure that the Bill realises the aims of the Government’s original Green Paper, the Bill’s focus should be widened to include all disabled children, including those without a statement of SEN; the Bill should make clear what disabled children can expect from local services through a ‘duty to provide’ and a national framework for local offers; the entitlement to Education, Health and Care Plans (EHCPs) should extend to all disabled 18 to 25 year olds, including those no longer in education; and the duties on health services to contribute to integrated assessment and delivery need to be clearer and more explicit in the Bill.

14. We provide more detail about these key points below:

The Bill’s focus should be widened to include all disabled children

15. The SEND Green paper set out plans for "a new single assessment process and EHCP by 2014 to replace the statutory SEN assessment and statement, bringing together the support on which children and their families rely across education, health and social care". Clauses 36-45 of the Bill replace statements of SEN with EHCPs.

16. Following its pre-legislative scrutiny of the Bill, the Education Select Committee recommended that the scope of entitlement to integrated EHC provision and assessments should be extended to disabled children, with or without a statement of SEN.

17. Despite the committee’s recommendation, the Government has chosen not to include disabled children without SEN within the scope of the Bill. This means that disabled children and families who do not require support in school or are not in education or training will not benefit from more integrated services - despite the significant amounts of time and effort that many have to commit to secure the care and support they need.

The local offer

18. Clause 30 requires local authorities to produce information on the EHC services ‘it expects’ to be available locally - this will be known as the ‘local offer’. The intention is to give parents and young people clear information about local services and how they can access them. Together for Short Lives supports this aspiration, which should speed up access to those services and increase confidence in the system.

19. For young people transitioning from children’s to adult’s services, the Government has added "provision to assist in preparing children and young people for adulthood and independent living" into the list of information which needs to be provided in the local offer (clause 30(2)(e)). Provision to support children and young people for adulthood and independent living is defined as relating to housing, employment and participation in society (clause 30(3)).

20. In order for the local offer to be effective, we believe clause 30 needs to strengthened in two ways:

21. Currently a local authority will only have to set out the provision ‘it expects’ to be available in their local offer. This wording is not strong enough to provide redress for parents or young people if those services are not made available. We believe that there needs to be a legal duty to provide what is set out in the local offer. This will allow parents and young people and young people to challenge local authorities if the local offer is not delivered.

22. To address the current variation in support, a national framework should inform the development of each local offer.

23. The Bill should include a ‘duty to provide’ and a national framework to create much needed accountability for and consistency in local provision.

The entitlement to EHCPs should extend to all disabled 18 to 25 year olds, including those no longer in education

24. We support clause 45, which states that a young person who still requires educational support while completing an apprenticeship could still be entitled to an EHCP.

25. We also welcome the fact that this clause states that EHCPs will not automatically cease when a young person leaves education or training. Local authorities must consider whether "the educational outcomes set out in the plan have been achieved" before ceasing the plan (45(3)). This could also mean that if a young person becomes NEET (not in education, employment or training) before completing their educational objectives (e.g. to go to college), the local authority might be required to maintain the EHCP.

26. We are concerned, however, that young people between the ages of 18 and 25 who may move in and out of education, or leave education altogether will not have access to a single plan and may lose access to support; this would include many young people who need palliative care who, owing to the complexity of their conditions, do not continue in education.

27. We are also concerned that, as they stand, the Children and Families Bill and the draft Care and Support Bill will bring about two different systems for young disabled people who transition from children’s to adult services in England: if a young person is deemed to have an SEN, their EHCP could continue until their educational outcomes have been achieved up to the age of 25; however, if they do not have SEN, their local authority will have a duty to assess a disabled child’s probable adult care needs before they reach 18, should they be requested to do so.

28. To resolve these issues, both Bills should be amended to ensure that young people up to the age of 25 continue to have access to an EHCP, regardless of their educational circumstances.

The duties on health services need to be clearer

29. Clauses 25-29 require local services to co-operate, to jointly review services, and to put in place arrangements for joint commissioning. Clause 31 lists the bodies which are required to co-operate with Local Authorities in providing single assessments and EHCPs. Together for Short Lives does not believe that the duties on the NHS are strong enough in the Bill as introduced - a position shared by the Education Select Committee and a number of other organisations representing disabled children.

30. To this effect, we support the Government’s proposed amendments to clauses 21, 26, 28, 37, 41 and 42 which strengthen duties on the NHS to co-operate with local authorities. Co-operation between the NHS Commissioning Board and local authorities with regard to children and young people who require specialised health services commissioned by the former is particularly important. To this end, we welcome the proposed amendment to clause 26, page 19, line 38 which replaces "clinical commissioning groups" with "commissioning bodies".

31. While there are encouraging new duties on local authorities contained in the Bill, it is still not clear how local health authorities will be accountable for delivering the complex health interventions that many children with life-limiting conditions need. The Bill should be strengthened to make this clearer and aligned to duties on local authorities and health services set out in the Health and Social Care Act 2012.

The individual responsible for this submission

32. James Cooper, Public Affairs and Policy Officer at Together for Short Lives.

March 2013

Prepared 20th March 2013