Disabled Children

Part of the debate – in the House of Lords at 7:40 pm on 3rd February 2003.

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Photo of Baroness Massey of Darwen Baroness Massey of Darwen Labour 7:40 pm, 3rd February 2003

rose to ask Her Majesty's Government how they will respond to the needs of families with disabled children as highlighted in the Barnardo's report Still missing out?

My Lords, this debate is inspired by a report from Barnardo's and also by a meeting of the All-Party Parliamentary Group for Children, of which I am co-chair. At the meeting, a group of parents talked about their experiences of having one or more disabled children. I found the meeting a moving experience, raising many issues which I shall put before the House today.

I have been moved again by the number of noble Lords who are not only speaking but who have expressed interest in this all too brief debate. The noble Lord, Lord Morris of Manchester, particularly asked me to convey his apologies for being unable to be present. Noble Lords will know of the commitment of the noble Lord, Lord Morris, to working for disabled people over many years.

I ask the Minister to respond to this widespread interest—I know that she, too, is interested—by perhaps calling a more comprehensive, separate meeting to discuss the issues raised today. Such a meeting might discuss how to ensure that reports, policy and legislation incorporate the rights of the disabled. It is not enough to put disability into separate reports—important though they are. It must be integrated across government. For example, I shall be asking for disability in children to be included in the Green Paper Children at Risk, which will shortly go out for wider consultation. The paper has been produced with collaboration between government departments.

This has been, and is, a good government for children. The Barnardo's report recognises that progress has been made to benefit families with disabled children. However, there are two key issues. The first is ensuring that people understand their entitlement to benefits and, secondly, collaboration between services at a local level.

I shall give a brief background to the Barnardo's report Still Missing Out? and to general difficulties for parents of disabled children. I shall then focus on health as a key concern for the parents of children with disabilities. I know that other noble Lords have issues that they want to raise in some detail.

I should like to ask the Minister: which government policies, such as the child tax credit and child support reform, will improve the situation for parents of disabled children? What progress is there on the early support programme set up by the Department for Education and Skills? Do we yet have examples of good practice in supporting parents who have disabled children? For example, is there good collaboration between agencies at a local level?

First, I shall give some general points, all stated in the Barnardo's report. It is estimated that there are more than 360,000 disabled children in the UK. Approximately 90 per cent of those children live at home. During 2000-2001, 65 per cent of households with one or more disabled children, and 72 per cent of households with a disabled child and a disabled adult, were in the bottom two-fifths of income. The link between poverty and poor health is well documented. It is an even more chronic problem in families where there is disability. On average, it costs three times as much to bring up a disabled child—for example, the high costs of medical equipment, special play equipment and transport and, of course, disabled children tend to be dependent on parents for longer. However, take-up of disability living allowance is low, with poor families who have disabled children accessing it least. They do not, it seems, perceive the invalid care allowance as being available to parents. More targeted information is imperative.

These disadvantages raise serious concerns which parents feel are not always met. I shall say more about that later. In its responses to the Department of Health's Healthy Start report and to the Department for Work and Pensions' report Measuring Child Poverty, the Disability Alliance makes some very powerful points. Poverty is complex and multi-faceted. How much more do educational disadvantage, poor health, inadequate housing and low expectations affect those with disability? These factors are more difficult to quantify than income and work status.

I turn to one aspect of these concerns—health—as an example of disadvantage to disabled children and their parents. We all know how important health is to life chances and the ability to function. A report from the Children and Young People's Unit found that health and family were the top concerns among young people between 13 and 19 years-old. Health inequality has been researched and reported on for years. Health inequality begins at birth and can influence an entire life. This inequality is particularly relevant to disabled children and their parents. Poor health in such families can affect not only the disabled child, but the parents and any siblings of the child. As one parent said:

"We don't just have a disabled child, it affects every single aspect of our lives".

Perhaps I may give some examples of problems relating to health. Access to healthy and nutritious food can be an issue. For example, families with disabled children may not be able to shop around for cheap but nutritious food. Special food may be required—for example, in relation to some allergies or syndromes. As suggested by the Disability Alliance, the Healthy Start scheme should be clearly linked to comprehensive welfare advice schemes with clear information about benefit entitlement. As stated in the report, this is an issue for joined up thinking and,

"a public health issue rather than a medical intervention".

Play and leisure facilities are often difficult for a family with a disabled child. They involve not only facilities which are appropriate, but staff who are trained to deal with physical, emotional or mental disability. How does a parent cope with the play needs of a disabled child and a child who is not disabled in the same family? Costs are high. Giant finger dominoes cost £40; a building set in Velcro costs £80. How do families relax or go on outings or holidays? As one mother said:

"We don't go on holidays, we go on military manoeuvres".

The Council for Disabled Children points out that hospital appointments can be a severe problem, which may continue throughout a child's life. The treatment may be some distance from home, especially in rural areas. The costs can be enormous.

All these complexities place an enormous strain on families, and on marriages. That is not good for families and not good for society. The Department of Health report Valuing People sets out some of the challenges in relation to people with learning difficulties, all of which are applicable to those with other disabilities. The challenges include: better co-ordination of services, better planning for young disabled people as they move from childhood to adulthood, better opportunities for housing and employment, and better support for carers and better health care. The recent Childcare Review also emphasises the need for co-ordination of services—a recurrent theme in many reports relating to children and families. Co-ordination at national and local level is vital if parents and children are not to miss out.

I hope that I have shown—I know that other noble Lords will show—parenting and family life is more challenging for parents who have a disabled child, and an immense effort needs to be made to inform and involve them.

We have statistics. We know the challenges. We need to listen to what the parents of disabled children and the children themselves say in order to help us deliver the needed support. The aims of improving health, reducing health inequality and reducing poverty must include improving the lives of those families where there is disability.

I return to my original questions to the Minister. What good practice exists; and which government policies will provide practical and positive help for these families? As I said earlier, I hope that we can continue this dialogue in order to have a positive impact on the lives of children and parents living with disability.