My Lords, I will speak also to Amendments 79E, 79H and 88C, all of which are about parent carers, and later to Amendments 88E and 88F, which are about other aspects of carers.
The Care Bill is drafted to apply to adult carers of adults. This means that parents of disabled children are not included in the important new rights and duties introduced by the Bill. The amendments in this group seek to probe the Government’s intentions regarding parents of disabled children, and how their rights can be put on a par with those of other carers.
Under the Care Bill, a carer is an adult who provides or intends to provide care for another adult. It is therefore clear that parent carers of disabled children aged under 18 are excluded from the new entitlements. Parent carers are left with the existing statutory scheme and previous carers Acts, which are mostly Private Members’ Bills. While these Acts impose obligations on the local authority to assess parent carers’ needs, there is no statutory duty to provide services to meet carers’ needs.
In a recent report on the Children and Families Bill, published on 27 June, the Joint Committee on Human Rights acknowledged the concerns about the future of parent carers’ rights, but argued that it was a matter for the Care Bill. As these rights currently sit within children’s legislation, amendments to the Children and Families Bill are therefore needed to put the rights of parents of disabled children on the same level as those of other carers. I know that discussions are going on, and that Ministers have said that amendments will be introduced to the Children and Families Bill. However, it is important that parents caring for disabled children do not fall through the cracks, and that the Government acknowledge the need to give them parity with other carers. How will the Government ensure parity of rights for parents of disabled children, and how will they resolve the issue of whether this matter sits best within this Bill or the Children and Families Bill?
Amendment 78F includes parent carers in the well-being clause. The intention of the amendment is to include the parents of disabled children in the duty placed on local authorities by Clause 1 to promote the well-being of the adult who is carrying out functions under the Bill in relation to another adult. If anyone doubts whether this is necessary, they should remember that 72% of parent carers experience mental ill health, such as anxiety, depression or breakdown; 57% say that lack of support from statutory services means that they are isolated and not able to work as they would like; and one in five says that isolation has led to the break-up of family life.
Amendments 79E and 79H are about including parent carers in the prevention clause. Clause 2 requires local authorities to take steps, including providing or arranging services which are intended to prevent, reduce or delay the need for care and support by all local people, including adults and carers of adults. These amendments seek to include parents of disabled children —referred to here as “child carers”—in this duty so that local authorities have a duty to prevent or delay the development of the need of the parent carers for support. My apologies if any confusion has been caused by the use of the words “child carers”. We often use this term to refer to young carers, who are referred to elsewhere in amendments in this group. However, I wanted to be sure that the Government understood that this was not necessarily the parent of a child—it could be a parent, a grandparent or another relative. I hope that that has not caused any confusion.
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Parent carers too often reach crisis point, leading to high-cost interventions. In addition to the negative impact on outcomes for the whole family of parental mental and physical ill health, relationship breakdown and unemployment, it can also result in substantial costs to local authorities, commissioners and the economy.
Amendment 88C includes parent carers in the duty to assess. The Bill makes it easier for adults caring for adults to receive a carer’s assessment by creating an automatic right to assessment. This is very much to be welcomed because it removes the requirement that they provide “regular and substantial care”. However, unless changes are brought forward for parents of disabled children, they will still need to request a carer’s assessment from their local authority and they will not have a right to an assessment unless they provide regular and substantial care. Therefore, this amendment seeks to include parents of disabled children in the duty on local authorities to assess carers.
Parents commonly report an inability to get support that fits the whole family. They quite often need to devote space and time to their own lives and to the lives of the other children in their family. Often, the last person whom parents consider is themselves—until it is too late. Therefore, an earlier assessment, removing the barriers and establishing the overarching principle of well-being for a group that currently misses out could improve the rights of thousands of parents in England. This is a vital role that could be played by services.
The next amendment in this group in my name is Amendment 88E, which is about clarifying the responsibility of carers under NHS continuing care.
There is confusion over who is responsible for carers who provide care for somebody receiving NHS continuing care services in the community, and this can lead to carers being refused an assessment and support services from their local authority. Therefore, this amendment seeks to clarify that local authorities still have a duty of care to the carer if the disabled person is receiving NHS continuing care services in the community.
My final amendment in this group is Amendment 88F, which is about the health promotion of carers. Carers often take a long time to identify themselves as carers. They say that they are not a carer but a wife, a husband, a brother, a sister or a son. Carers UK found that 25% of carers took five years or more to recognise themselves as carers. Research from Carers UK shows that the high turnover of people taking on caring responsibilities means that as many as 2.3 million people start caring and a similar proportion cease caring. This combination of high turnover and the “hidden carer” effect may go some way to explain why an estimated £840 million in carers’ benefits alone go unclaimed every year. Once identified as carers, practical and financial support can be made available, and that can help carers to cope. Information strategies therefore need to be carefully targeted to ensure that carers do not miss out on their entitlements.
We know that care by families and friends is often provided at the cost of their own health. I think it is true to say that the NHS, in all its forms, has been slower to recognise the needs of carers than have local authorities. This amendment is about evening up that balance a little.
I end with the words of a carer:
“I have received some support and advice but only when I have asked for it. I feel that GPs and community nurses should do more to help carers. Very often carers don’t even have time to make appointments. Therefore, it would be helpful … if GPs and nurses took the initiative more often”.
I beg to move.