Minister of State for Care and Support

Department of Health

Richmond House

79 Whitehall

London SW1A 2NS

Date: September 26^th, 2013 

Dear Norman,

I am writing to you about the provisions in the Care Bill which offer enhanced support for the carers of adults. I support enhancing carers’ rights to assessment and support, but I am concerned and puzzled by the exclusion of the carers of children and young people from the Bill.

Parents who care for their disabled children provide them with vital care and support, as well as saving the state a significant sum of money, yet many receive inadequate support. Amaze, a charity working in my constituency to support families with disabled children, have found that a significant proportion of parent carers feel financially and socially isolated and face mental health problems.

Their recent survey found that 58% of parent carers feel stressed, anxious or depressed some of the time, while 18% feels that way all the time. There is a lack of support, with 70% of respondents reporting that they are completely or mainly alone in their caring role. 22% of carers reported that they have not had a day or evening off from caring in over six months, while 14% have never had an evening off from caring. Only 15% of parent carers receive any respite care, of whom 82% said that any reduction in this would have a devastating impact on their family.

Providing these carers with the support they need to continue looking after their children makes financial sense, and avoids the need for more costly interventions if families fall into crisis later on. Yet the Bill as currently drafted excludes the carers of children from the enhanced rights to support and assessment which are provided to the carers of adults. Nor is this the only exclusion; the Bill penalises young carers by offering support only to those undertaking substantial amounts of care on a regular basis, a requirement that it removes for adult carers. I fail to see how young carers are less deserving of support than adult carers.

I would be grateful if you could tell me whether these exclusions are a drafting error or Government policy. If they are unintentional, will the Government commit to amending the Bill to end this penalising of people who care for children rather than adults, and of young carers? If it is a policy decision, I would be grateful if you would explain the reasoning behind it. How can the Government justify offering less support to people because they care for children rather than adults, or because they are a young carer? Will the Government commit in future to ensuring parity between child and adult carers? The piecemeal approach of the current legislation will result in unnecessary confusion for local authorities and people with care needs if these inconsistencies are not dealt with.

As raised previously with your colleagues, I am also anxious that the Children and Families Bill excludes disabled children who do not have an identified special educational need. At present, gaps in these two pieces of legislation will significantly and unnecessarily disadvantage disabled children and the parents who care for them. I urge you to take the necessary steps to ensure that no one, particularly those who are most vulnerable, is left out of provisions to support disabled children and their carers.

Finally, the Bill as currently drafted permits local authorities to charge for support services for carers. I feel that it is deeply inappropriate and unfair for people who provide essential care services, often at significant emotional and financial cost to themselves, to be charged for the support which allows them to continue caring. Does the Government plan to support keeping these provisions in the Bill?

The Government’s current fragmented approach to the needs of carers of all ages is confusing and unnecessary. The equivalent Bill proposed by the Welsh Government will cover both adults and children, with the introduction to the Bill stating that social care services should be provided on the basis of need and not of age. [1] Why is the Coalition not taking a similar approach?

Amaze would welcome you visiting them in Brighton to see first-hand how vulnerable disabled children and their parents are, and why they are in need of support. Please let me know if you are able to accept this invitation.

Yours sincerely,