Care Bill [HL]

Lord Patel Excerpts

Monday 22nd July 2013 Lords Chamber

Moved by

[Lord Patel]

92B: Clause 55, page 43, leave out lines 20 to 24 and insert—
“(1) When a child receiving services reaches the age of 14, or a local authority receives a request from the child, or a parent or carer of the child, to assess the child’s needs for care and support (whichever is sooner), the authority must, if the consent condition is met, assess—”

[Lord Patel]

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.

--- Later in debate ---

[Earl Howe]

My Lords, I thank Members of the Committee, and especially the noble Lord, Lord Patel, for a debate which illustrates the significance of transition to young people and their families and the need to get the legal framework right for them.

As we have heard, these amendments cover a range of issues. In respect of Amendments 92D, 98 and 100, I have listened with interest to concerns about the absence of a requirement that transition assessment should take place at a particular age. We are in agreement that the timing of assessment is crucial, but this is essentially a question of approach.

The Care Bill proposes that two tests be used to ensure that assessment takes place at the right time for each young person or carer. We believe that this is preferable to rigid timescales which take no account of an individual’s needs or circumstances. First, a local authority may assess a young person, their carer or a young carer where it appears to the local authority that the child or carer is likely to have needs upon the child turning 18. This is to be used in conjunction with the second consideration, whether assessment would be of “significant benefit”. This recognises that a one-size-fits-all approach is not in the best interests of young people or their carers.

Amendments 92B and 92C would limit the group of young people who can benefit from transition planning to those who are already in receipt of services. We would not wish to impose any such restriction. Indeed, this restriction was removed following public consultation and pre-legislative scrutiny, because transition planning may equally benefit those who are not currently in receipt of services.

I have heard the concerns expressed that local authorities are not under a duty to assess in every case. This is indeed true, and for very good reason. Some young people will not have needs for care and support after the age of 18. It will not be appropriate, nor indeed will it be in a young person’s interests, to assess in every case.

I listened with interest to concerns about provision for carers of children. We need to be clear about this. Support should be available where it is needed. The question is the source and nature of that support. Clause 59 provides a power, rather than a duty, for local authorities to provide support because existing children’s legislation already includes provision for support to a child’s carer. Duplication of existing legislation may cause confusion and is unnecessary. This power is intended to enable support to be provided under adult legislation where a certain service is available only locally via that route.

I turn now to planning for transition and Amendments 92BA and 94. Provision for transition assessment is focused on the outcomes that the individual wants to achieve. I can reassure the noble Lord, Lord Patel, that such outcomes may include employment, education or housing. I also share the noble Lord’s expectation that, when a child has an education, health and care plan, any assessment under these clauses should take the EHC plan into account and the assessment should be integrated into that plan.

The Care Bill and the Children and Families Bill include provision that assessment can be joint, including joined-up assessments in relation to an EHC plan. These issues will be addressed by both the guidance supporting the Care Bill and the Department for Education’s SEN code of practice.

In respect of Amendment 94, I briefly add two further points. First, when a young person over the age of 18 has an EHC plan, and as such the care part of that plan is provided under this Bill, we would expect co-operation between adult and children’s services in relation to any review of the plan under Clause 6(5)(a) and (b). Such co-operation for those under 18 who are in transition is provided for by Clause 6(5)(c). This would include co-operation with the preparation, maintenance and review of the EHC plan as provided for by the Children and Families Bill, in respect of children. Guidance can ensure that this is clear.

Secondly, requiring a local authority to make arrangements to secure provision for children and young people with a transition plan would not be appropriate. Services to children cannot be provided under the Care Bill. Children’s legislation provides for this. Services to young people over the age of 18 would be provided, if necessary, under provisions earlier in Part 1.

In relation to Amendment 104ZA, I agree on the need to ensure continuity of care. However, we must avoid creating overlap or confusion with local authorities’ existing duties in relation to children, including rights to assessment and support under the Children Act 1989. For this reason, it would be preferable for the young person to request assessment as they see fit and for the local authority to initiate this conversation with the child. The request itself is not envisaged as a formal process. Indeed, for some young people the request will form part of a conversation the local authority initiates about transition to adulthood. Guidance can be used to make this point.

Young people and their families will need information in order that they can understand the adult care and support system and, crucially, that they are aware of their right to request assessment. Clause 4 requires local authorities to establish and maintain an accessible system for information and advice including information and advice about how to access the care and support that is available.

Through Amendments 95, 96 and 97, the noble Lord, Lord Patel, the noble Baroness, Lady Pitkeathley, and the noble Lord, Lord Patel of Bradford, have also expressed concern that there should be provision to support children with care needs to move between areas, without the fear of experiencing a gap in their care and support. I agree. Provision for people over the age of 18 already exists at Clauses 36 and 37 and provision for children with an Education Health and Care plan exists in the Children and Families Bill. If a young person under the age of 18 who has had an assessment under the provisions of Clauses 55 or 60 moves to a new area, the general duties of co-operation, in particular with other local authorities under Clause 6(6)(b), would also apply.

I should like to reassure the noble Baroness, Lady Pitkeathley, in relation to Amendments 93B, 100A and 104ZZA that consideration of “other matters”, a person’s own capabilities and the other support that may be available does not exclude the provision of more conventional care and support services where needed. Indeed, when the child becomes 18, if the individual’s needs are eligible, the local authority must meet them, in accordance with Clause 18, if the adult wants the authority to do so, and those requirements are not diminished by these three paragraphs. The intention is to recognise that, in order to make the right connections to the local community and the variety of support available, the local authority should consider how these matters, along with more formal care and support provision, could be of benefit in achieving the adult’s outcomes.

The noble Baroness suggested that carers might be pressurised by these provisions into providing care. It is certainly not our intention that pressure is put on carers. The clauses make it very clear that a carer must be willing and able to provide support and that the impact upon carers’ well-being must be considered.

She flagged up the concern that the new provisions in Clauses 56, 58 and 61 are departures from the draft Bill and asked why that was the case. The Bill as introduced includes greater clarification as to the nature of the assessment that should be carried out and what should be considered. It is largely for drafting reasons that we split the subsections relating to children, children’s carers and young carers into two subsections for each group.

The noble Lord, Lord Warner, pointed out that, in his view, the Bill is framed as though young people are strangers to the local authority. The Bill makes provision both for those who are receiving children’s services and are known to social services and for those who are not currently receiving care and support. Clause 6 provides a duty to co-operate, including within the local authority. In particular, in relation to children transitioning to adulthood, there is a duty for those internal discussions to take place. The request mechanism in the Bill is not intended to be a formal or bureaucratic process, as I mentioned earlier.

The noble Lord, Lord Hunt, asked me to confirm whether the Government are considering bringing forward amendments on carers, and expressed his concern that the timing of the Children and Families Bill relative to this Bill is unfortunate. I can tell him that my noble friend Lord Nash, at Second Reading of the Children and Families Bill in your Lordships’ House, said:

“As my honourable friend the Minister for Children has said, we are considering how the legislation for young carers might be changed so that rights and responsibilities are clearer to young carers and practitioners alike. We will also look at how we can ensure that children’s legislation works with adults’ legislation to support the linking of assessments, as set out in the Care Bill, to enable whole-family approaches”.—[Official Report, 2/7/13; col. 1201-02.]

The Minister for Children and Families and the Minister for Care and Support have met the National Young Carers Coalition to discuss the key principles for taking this work forward over the summer, as well as how we can most effectively involve the NYCC during this period.

Finally, the government amendment in this group will ensure that the provision added to Clauses 58 and 61, following consultation and pre-legislative scrutiny, specifying that a needs assessment must include an assessment of the impact of the adult’s needs for care and support on their well-being, is also added to Clause 56.

We have had much discussion recently about the need to ensure that services are organised around the needs of individuals. I hope that I have been able to explain how this legislative framework for transition is focused on meeting that aspiration. I hope, too, that I have provided some reassurance about the approach we are taking to smooth the transition to adult care and support. I hope that the noble Lord, Lord Patel, will feel able to withdraw his amendment.

[Lord Patel]

My Lords, I thank the Minister for his response, which was as detailed as my amendments. I am reassured by some of the things that he has said, and how the Bill addresses those issues. Although the Minister does not agree with me, there is an issue about specifying the age of 14 as the time of assessment for this small number of vulnerable children. There is a need to do so. However, at this point I do not wish to prolong it. I beg leave to withdraw the amendment, but I hope that we will have further discussion outside the Chamber.

Amendment 92B withdrawn.