My Lords, I shall speak also to my Amendments 92C and 92D, 94 to 100 and 101 to 104 concerning Clauses 55, 57 and 59. I also support Amendment 92BA, which is in a similar vein to my Amendment 94, and Amendment 104ZA in the names of the noble Baronesses, Lady Browning and Lady Tyler of Enfield, and the noble Lord, Lord Touhig, which is similar to my Amendment 92C. I also support government Amendment 93A. I thank all noble Lords who have added their names to my amendments, for which I am very appreciative.
My amendments deal mainly with the problems experienced by extremely vulnerable children as they transit from children to young adults, then adults and adulthood, by placing a duty on local authorities to assist this group of children. There are about 45,000—I repeat: 45,000—children or young people from newborns to the age of 19 who have long-term health conditions which will eventually end the lives of most of them and for which they may require palliative care. Medical advances mean that more young people with a range of different conditions are living into adulthood than ever before. The greatest increase is among those aged 16 to 19, who now account for 4,000, or one in 10, newborns to 19 year-olds needing palliative care.
The majority of young people who may require palliative care have a range of severe disabilities and complex health needs. Cancer represents just under 14% of diagnoses. Many young people have cognitive impairments, meaning that they lack capacity, and many are cared for over long periods by parent carers. Many young people with life-limiting or life-threatening conditions who are more cognitively able struggle to achieve independence or to enter education or employment because plans are not made for them. Those who are unlikely to be cured by treatment are offered palliative care. Transition for children after their 16th birthday is complex. Successful transition needs to address the transfer of responsibility for young people from children to existing adult social care, health and education services, and the development of new adult services tailored to young people’s additional needs.
It needs to be planned years in advance, but sadly the reality is that transition planning is too often disjointed and poor. As a result, many young people and their families find transition daunting. All this happens at a time when young people’s needs may be greatest, as many chronic, progressive conditions reach a crisis during late adolescence and young adulthood. Given the situation, these young people and their families cannot afford to wait and adult agencies need to ensure that their responses are timely and appropriate.
Together for Short Lives is a consortium of charities that looks after these children as a transition task force. It sought the opinions of young people who need palliative care. The view of young people is that the adult services they need are inadequate. They want services that enable them to lead ordinary lives, including a social life. They want a feeling of freedom, and not to be overwhelmed or bossed around by adults, while at the same time to be offered appropriate support. The young people’s frustrations with transition are shared by their parents.
I recognise that the Government have included Clauses 55 and 63 with the intention of ensuring better planning for young people who need to transition. I welcome the powers that local authorities will have to assess young people under the adult statute ahead of the young person’s 18th birthday. Despite the Government’s good intentions the clauses as they stand will not offer the certainty and reassurance that young people with very complex needs, and their families, desperately seek. On Second Reading, the Minister stated:
“The Bill will ensure that no child reaching the age of 18 should go without the care and support that they need around the point of transition”.—[Official Report, 21/5/13; col. 828.]
However, in only giving powers and not duties to local authorities to undertake a child’s needs assessment, the wide variation in the quality of transition planning will simply remain in those cases where children and their families do not request an assessment. Local authorities will face particular financial pressures.
My Amendment 92B would ensure that no young person misses out on a child’s needs assessment. It would replace the power for a local authority to undertake a child’s needs assessment request with a duty. Setting the age threshold for a child’s needs assessment at 14 is based on existing statutory requirements for every young person in year nine—that is age 14 to 15—with a statement of special educational needs to have a transition element. The amendment merely mirrors that.
Amendment 92C sets out the existing legislation underpinning the services that a young person who needs palliative care receives. The amendment would ensure that a local authority would be obliged to carry out a child’s needs assessment for a young person receiving the services specified over a long-term period up to the age of 14.
If 14 is the age at which transition planning should begin for a young person who needs palliative care by the age of 16, every young person who is likely to need adult health or social care when they reach 18 should have received a child’s needs assessment. That would
ensure that the assessment happens in good time before the transition to adult services takes place. My Amendment 92D would mean that this is the case.
Amendment 94 would ensure, by putting a duty on local authorities, that if a child’s needs assessment finds that a young person is likely to need health or social care when they reach adulthood, a statutory five-year rolling transition plan should be prepared for the child or young person by the time they are 16. Amendment 94 has a number of other important features. It would mean that children, parents and carers are involved in the transition planning process. It would ensure that transition plans are maintained until the young person reaches the age of 25.
Like all young people, many of those who need palliative care want to strike out on their own and establish their independence. It should be remembered that these are children who are on longer-term palliative care. They hope to go into further or higher education, get a job, move into their own home and develop a social life. Amendment 94 would ensure that young people’s aspirations to move into their own homes would be included in the transition plan. Tragically, as a result of lack of planning, many are unable to do so. Too many of these young adults die while they are waiting on housing lists.
One of the provisions included in the Children and Families Bill is to introduce an integrated education, health and care plan—EHC plan—for young people who have special educational needs. This will include many, but crucially not all, young people who need palliative care. When a young person stays in education and training, they will be eligible for an EHC plan until the age of 25. I recognise that an EHC plan could fulfil the functions that I intend a transition plan in my amendment to do. Indeed, an optimal position would be where EHC plans are available to all young disabled people up to the age of 25. In lieu of that, this amendment is necessarily lengthy—I apologise for that—to ensure that a statutory plan is put in place to provide similarly joined-up transition provision for young people who need palliative care but do not have SEN.
Amendments 95, 96 and 97 aim to ensure that transition planning is maintained for young people who need palliative care and who move from one local authority area to another. They mirror Clauses 36 to 40 in the Bill, which place duties on local authorities to ensure continuity of social care when adults move from one area to another—so why not for these vulnerable children?
Amendment 97 would provide for the Secretary of State or an appointed person to step in to resolve any disputes about where that young person lives with regard to assessing the child’s needs and preparing a transition plan. The amendment would provide for the continuation of a young person’s transition plan where such a dispute arises. In considering young people who need transition from children to adult services, it is vital that we take into account the needs of those who care for them. Again, I recognise and support the Government's aspiration to do so in the Bill. However, as with the clauses relating to planning for young
people’s needs on transition, I believe that we need to go further in order to ensure that planning for carers also happens in practice.
Amendment 98 would place a duty on local authorities to assess the likely care needs of those caring for a child who is likely to need services as an adult. Under the current wording in the Bill, local authorities would have the power to conduct a child’s carer assessment but would not be obliged to do so. That has the potential again to create unnecessary variations in transition planning for carers in local areas.
As I proposed in Amendments 92D and 98, 14 is the age at which transition planning should begin for a young person who needs palliative care and their carer. The young person’s and the carer’s needs should be assessed by the time the young person is 16. This would ensure that the assessments happened in good time before the transition to adult services took place. Amendment 100 would ensure that that is the case.
Amendments 101, 102, 103 and 104 are consequential to Amendment 100. Amendments 101 to 104 further strengthen the Bill by making sure that local authorities are duty bound to meet a child carer’s need for support.
I repeat that my amendments seek to put a duty on local authorities to assist 45,000 of the most vulnerable children whose lives will be short because of their conditions. The amendments will give them an opportunity to have a semblance of normal, enjoyable life with appropriate support and care. It is neither organisationally nor financially a great deal to ask.
I realise that my amendments are lengthy and I am sure that the Bill team could do a better job with much abbreviated amendments to meet the same needs. If the Minister feels that the amendments are too wide in scope, I will be pleased to be of assistance in narrowing them down to focus particularly on these vulnerable children. I beg to move.
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