Disabled Children

HL Deb 03 February 2003 vol 644 cc82-104

7.40 p.m.

Baroness Massey of Darwen 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?

The noble Baroness said: 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 multifaceted. 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 coordination 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.

7.50 p.m.

Baroness Pitkeathley

My Lords, I thank my noble friend for giving us the opportunity to focus on the needs of families with disabled children—always a vital interest of mine. Although many of them do not think of themselves as carers, but simply as a mum, a dad or a grandparent, they are carers, with all the responsibility that that carries.

For families of disabled children, finances are always a problem. There have been significant improvements in benefits in relation to disabled children in recent years. One example is the recent extension of the invalid care allowance to the over-65s, which will help many grandparents of disabled children who play such a vital part in their care.

But, still, half of all households with disabled children lack some of life's basic necessities because they cannot afford them. A rise in the rate of disability living allowance would help some of those families out of poverty. But it is important, as my noble friend reminded us, to encourage families to claim the allowance. Studies consistently show that those most in need—lone parents and minority ethnic parents, for example—frequently fail to claim.

I should like briefly to draw your Lordships' attention to three other financial issues. The provisions within the council tax which allow parents of children over 18 to claim a discount but which prevent parents of younger children being allowed to claim should be reviewed.

A lack of assistance from the Social Fund is frequently a cause of problems for parents of disabled children, causing them to turn in ever-increasing numbers to charitable bodies to get help with basic essentials.

A cost which is often overlooked is that of visiting children who are in-patients in hospital. On 25th March last year I brought this matter to the attention of the House and was told that the situation was under consideration. Yet families still say that nothing has changed. As one mother said,

My son spent many months in and out of hospital for various operations. With two other children to care for I had to take time off work and we were practically penniless. Assistance with travel costs to visit him in the hospital would have taken some of the pressure off … My son is now due another operation and you can imagine the financial and emotional stress. I never want to open the kitchen cupboard doors again and be faced with emptiness". I hope that the Minister can give us some hope in that regard.

Many aspects of family life which other parents take for granted are not possible for those with a disabled child. I was interested to hear my noble friend refer to leisure activities. Contact a Family—the leading organisation for parent carers—produced a survey last summer of families' experiences of leisure provision entitled Everybody Here?. The survey, of over 1,000 parents, found that 46 per cent said that their budget limited outings and 80 per cent said that their disabled children could not join clubs. One mother told researchers: I want to weep when I look at all the lists of riding/swimming/ drama clubs open to other children, all of which he would enjoy". Giving disabled children equal access to leisure is of vital importance. That is why I am delighted that discussion about funding children's play from the national lottery is now under way. I declare an interest as chair of the New Opportunities Fund, the largest of the lottery distributors. If that happens, we must ensure that the needs of disabled children are an essential component.

As regards practical support, direct payments will in the future provide many more parents with the ability to control the services that they receive for their children. Local authorities need to promote direct payments and support parents in their new responsibilities so that they can gain the confidence to use them effectively.

The Government are to be congratulated on ensuring that the needs of disabled children and their families will be at the heart of the national service framework for children. The expert working group on disabled children, chaired by Francine Bates, the chief executive of Contact a Family, gives us the opportunity to make a real difference to health and social care for the 350,000 or so disabled children in England.

The Government need to make a commitment to providing the funding to enable health and social services to raise their standards to ensure that children's services can indeed improve. They also need to ensure that the emerging findings from the children's NSF are published before March so that local plans for health and social care services over the next three years can give proper regard to the needs of disabled children. Can the Minister say when the document will be available?

The national service framework for children gives us a very real opportunity to change children's lives, and inevitably the lives of their parents, for the better. But it must be accompanied by putting priorities right and providing the funding necessary to do the job if disabled children are to move as far up the social policy agenda as we are committed to seeing happen.

7.55 p.m.

Baroness Howarth of Breckland

My Lords, I thank the noble Baroness, Lady Massey, for introducing the debate on behalf of the 360,000 disabled children— 100,000 of whom will be severely disabled. This is the group on which I want to focus. These children will survive because of the wonders of modern medicine. They will live longer than their predecessors. Most will live with their families—carers who need and deserve support in their task.

Although we can acknowledge the work of many initiatives in social services—of the specialist teams and the voluntary organisations—we have to remember that it is far from enough. In the words of one of the parents in the recent "Panorama" programme, There's no structure to support families like ours, it's a bit like living in a war zone". To provide such families with the support that they need requires resource planning, sensitive assessment and priority. I am sure that other speakers will talk about these. But those that need expensive care—care which we presently require the parents to deliver— need detailed thought. We seem prepared to give expensive initial medical care. We fight hard to save premature babies. This is vital. But follow-up is equally important in the survival of the families who will then need to care for the children.

As vice-chair of John Grooms, an association dealing with the provision of services for younger disabled adults, I have been chairing an inquiry examining the future needs of these young people. We had to start where the problems begin; namely, with the needs of children in families. We found that there is a serious lack of data on which to plan. There are lots of numbers, but it is unclear as to where they lead. It would help if health and social care could produce easily available information on which plans could be produced for the future.

Unexpectedly, medical science has not reduced the numbers of children born with serious disability. Certainly, the figures for conditions such as spina bifida have fallen. The fall is attributed partly to antenatal screening and terminations of pregnancy; and over 50 per cent of it is attributed to an increased intake of dietary foliate—I congratulate the Government on their education programmes in this area. We should rejoice that at least 85 per cent of children born with this condition will live into adulthood. But if we add to those the large number of premature babies born each year who would previously have died but will survive and will suffer severe disabilities, we see that planning for the social care of this increasing number of youngsters is imperative.

We all know that the gaps in social care are huge. The Government are working to ensure that plans are in place for early discharge, yet the reality is that families with totally dependent children may have little or no respite or home care support. Can the Minister assure us that, in the pressure to meet other targets, the services available to these families will not be reduced, and that they will not find themselves even lower down the priority list than they are at present?

Voluntary organisations play their part. Perhaps I may briefly mention two small ones. Last year, I visited the PACE centre in Aylesbury, which is developing conductive education for children between six and 12. The staff believe that the most disabled child can learn through daily routines, working on the principle that they will develop. I met parents anxious because at any moment the funding from the local education authority might be withdrawn or their child allocated to other provision for reasons of local budgets. The director, a brilliant teacher of severely disabled children, spends much of her valuable time worrying about funding.

In the few moments I have left I should like to draw attention to a group of families whose children have invisible disabilities. These children look like other children. They are bright and active and their development for the most part goes through normal stages. Their needs are less obvious but no less distressing. They have the complex congenital heart condition, hypoplastic left heart syndrome. The future of this group of youngsters is completely unknown as the eldest surviving child in this country is only 12; one child in the United States is 17. For years these families were isolated by the complexity of the disease and the distances they had to travel to receive treatment. The charity, Left Heart Matters, met those needs. I had the privilege of being invited to become their patron last year. It has been a huge privilege to be with those families, listening to their hopes and dreams for the future—a future which just might not come. But their frustrations are equally great. For many, if they cannot see the disability, it is not there. Schools do not always recognise the needs of these children and benefits are not easy to come by because one cannot see what is happening.

Do the Government have words of encouragement for the many voluntary groups providing the human local care that families can access to survive? Will they encourage both local and central government to include them in their plans? Families should not feel that they are living in a war zone but in a responsive, caring and civilised society. For it is on how we respond to the needs of these families that the quality of our civilisation will be judged.

8.2 p.m.

Baroness Masham of Ilton

My Lords, I thank the noble Baroness, Lady Massey of Darwen, for asking this Question. The interest of your Lordships will, I hope, filter down to some of the families with profoundly disabled children who may feel isolated. frustrated, let down and at breaking point if they are not receiving adequate help and, even worse, if the promised help does not turn up.

The Barnardo's report has highlighted the extra expense of bringing up a disabled child and has given several cases as examples. A week ago on Sunday, "Panorama" highlighted some of the desperate struggles some families with profoundly disabled children were having and cited Oxford county council as one authority which cut services.

When a diagnosis of disability is made the reaction of parents is often one of disappointment. Some families have a wonderful way of coping and caring while others cannot manage and give up the struggle. Many mothers with disabled children would love to go out to work and would be better for it. But so often people will not take the responsibility of helping to look after a disabled child, so the parent can be tied 24 hours a day, seven days a week.

I know a couple who have three children. One has a heart problem and has had operations, with more to come. He is a floppy child and has a statement at school. There are other disabled children at the school who do not have statements so the school uses his statement to help them, thus diluting the help he should have. Surely, if those children need extra help they should also have statements. The parents of the little boy do not want to become unpopular, so nothing is said. Assessment of the needs of children with a variety of disabilities can take a long time. There is often a lack of occupational therapists: they go on leave, get married or leave the country. What I find sad in the case of this little boy is that his two brothers are asked to parties but he is not. That is another 'way of missing out.

A disabled child's shopping list may be very long: suitable housing; extra clothing and bedding; special food; childcare; suitable holidays; speech and physiotherapy; and special equipment. But kind and understanding attitudes to a disabled child and the family can make all the difference in helping to overcome the many problems which do and will arise.

Why is it such a struggle to access the appropriate help for individual children—whether for special help at a school for dyslexic children or with the choice of many special pieces of equipment which may not be available on the national health? There are so many things which disabled children need. Sometimes obtaining specialised medical help can mean travelling a long way to a specialised hospital unit, involving extra cost, strain and stress on the family and the siblings. There are sometimes charitable funds for travel to hospital but that help is patchy and often not available or unknown.

I hope that this short debate will highlight some of those needs. I am sure the Minister will do her best to help with this worthwhile and urgent matter of disabled children and their families.

8.7 p.m.

Lord Rix

My Lords, we need from time to time the opportunity to peep into the lives of families with disabled children, and I am glad that the noble Baroness, Lady Massey, has provided such an opportunity. As president of Mencap, I am particularly grateful.

We are looking at ordinary families trying to enable children with exceptional needs to live, as far as possible, an ordinary life. They are not in general the sort of family that hits the headlines in the tabloid press, or makes for popular television documentaries. Instead of sex, violence and infidelity, there are six loads of washing a day, sleepless nights and sheer dogged devotion day in and day out for years on end. I think of the mother who said she had had quite a. good night—no screaming from 1.30 a.m. to 4.30 a.m.

The Barnardo's Still Missing Out? report shows that such families are still missing out—on benefits, on services, on support which would make life a little more normal. In some ways it is worse still, because some families who have had minimal support are now losing it. You may recall that the Unjust Steward in the biblical parable was commended on cutting in half the bills of his master's customers. Sadly, in these days— if last week's "Panorama" programme is to be believed—it is the sad lot of some care managers to be required by their masters to cut in half not the bills but the services of customers. Today Oxfordshire; tomorrow—who knows where? But Oxfordshire is not unique in having to produce £9 million in savings rather than the more pleasant task of how to spend additional resources.

In the shadow of the "Panorama" programme, but unrelated to it, the Learning Disability Helpline recently—a week last Monday, I think it was—took a call from the parent of a severely disabled child who was at her wits' end because she was being told in effect that once she broke down someone would do something, but since she was only at the first stage of breaking down, it was too early to give her priority. Happily, a Mencap officer was able to infuse a sense of urgency to a level at which things were done and solutions found. But we all know that solutions arrived at in a matter of hours can be less satisfactory than solutions carefully thought through over several weeks. On such snap decisions may turn the future cohesion of the family and the future welfare of the child.

Of course, as we have just heard, the Government have done quite a lot for severely disabled children, as no doubt the Minister will, quite properly, remind us. More good things, including benefits changes, are in the pipeline. I know, because Ministers and officials have been very helpful in involving the voluntary sector in their planning. But I would like to build on this with some questions, to which answers in due course would be much appreciated.

Would the Minister agree that any child with profound intellectual disability and additional physical and sensory disabilities should be in the priority category for support, whatever the nature of the local eligibility criteria? Would the Minister confirm that the Valuing People White Paper target of 6,000 additional health and social care support packages for severely disabled children was met by the end of last year? Finally, as touched on by other speakers, will the Minister encourage her DWP colleagues to take the opportunity of the review of DLA and other benefit procedures to ensure that parents are prompted to make appropriate claims for benefits at such key stages as age 3, 5, 8, 11, 14 and 16, when support arrangements are also reviewed?

There is no reason why children should miss out, when Parliament and government have gone to some trouble to extend the help available to them. It is not beyond the realm of possibility, in an electronic age that gives me instant access to 24-hour world news, to turn that familiar lament, "If only I had known", into a celebratory, "Thank goodness someone told me".

8.12 p.m.

The Lord Bishop of Lichfield

My Lords, I understand that there is a known rise in childhood autism in this country. I understand that there is a high proportion of children with serious and complex disabilities. I understand that there is an increase of life-limiting illnesses among disabled children. An Oxfordshire study by the parents advisory group confirmed many of the findings of the Barnardo's report.

The Oxfordshire study revealed the overwhelming need in 232 families, studied for a range of support services. They needed help with overnight respite care and regular reliable short breaks for carers. They needed help either in the family home or elsewhere. They needed sitters, after-school clubs and appropriate play and leisure provision to overcome social isolation.

The overall shortfall in funding has meant that the introduction of new regulations and legislation for children has not been properly implemented to meet baseline needs. Further, the lack of sufficient funding is exacerbated by the increasingly complex funding formulae. I gather that the local authority circular last year is a good example of the headaches afflicting officers and councillors when they are trying to work out what grants are available and when they are available for the children in need.

I urge the Government to consider increasing funding to local health and social services authorities to a level above inflation so that the needs of families with disabled children can be more adequately met.

8.14 p.m.

Lord Chan

My Lords, I congratulate the noble Baroness, Lady Massey of Darwen, on securing this short debate highlighting the needs of families with disabled children. I shall focus on the needs of ethnic minority families with disabled children whom I have met in the north of England.

The Barnardo's report Still Missing Out?, which has been referred to in the debate, found that, Minority ethnic families are more likely to have low incomes and unsuitable housing". As the cost of raising a child with severe impairment is said to be three times more than that of raising a non-disabled child, most, if not all, ethnic minority families with disabled children live in poverty. Child poverty in inner London affects 600,000, or 53 per cent of children. Poverty is highest among ethnic minority groups, with 73 per cent of Pakistani and Bangladeshi children in inner London and 55 per cent of black children living in poverty.

Many ethnic minority families are less able to access services due to their limited English and knowledge of available services. Information in south Asian languages and in Chinese is lacking. This lack of translated information has serious consequences, because ethnic minority families with disabled children tend to be economically disadvantaged by not claiming disability living allowance. This loss of disability living allowance is a significant loss to meeting the needs of their disabled children, including clothes, food and equipment. Most ethnic minority families are definitely still missing out.

Ethnic minority families face other barriers from mainstream providers, such as institutional racism in the form of insensitivity to culture, other languages and religions and stereotypes concerning family support networks that are no longer common. The extended family is no longer the norm among black people, Chinese and even Bangladeshis, Pakistanis and Indians.

Among some Chinese and south Asian families, there is still a stigma attached to disability. This makes them reluctant to seek help from their own community. Therefore, minority ethnic parents feel isolated from their own communities and cannot go out to social events or attend places of worship. Among south Asian communities in northern England, about one in five families with disabled children are single-parent families.

Short breaks for disabled children are a popular service with parents and carers. Ethnic minority families do not have equal access to this service. A review of short breaks for disabled children from minority ethnic families was commissioned by the Joseph Rowntree Foundation and published in May 2002. It found that mainstream services for disabled children do not adequately cater for ethnic minority children, while services for ethnic minority groups do not adequately cater for disabled children.

High levels of unmet need were found among south Asian families in particular. They prefer home-based services such as sitting and befriending, but these services are not easily available for ethnic minority families with disabled children through social services.

Further, misconceptions about the role of social services and social work increase parents' anxiety about whether their child's culture, language and religion will be respected. Therefore, there is a reliance on poorly resourced voluntary groups in their communities. A shortage of black social workers and short break carers means that services cannot adequately represent the communities they serve. In Liverpool this problem led to the establishment of a bilingual Chinese work unit in 1986 that is still valued today.

Government policies to end child poverty are not reaching disabled children, particularly from ethnic minority families. I support the recommendations made by Barnardo's to give the families of disabled children better access to existing funds, such as the disability living allowance, and to extend other schemes for their benefit. All disabled people in Britain are entitled to basic living standards. Children should be given opportunities to express themselves through art, craft and technology.

I had the pleasure of opening an exhibition of art by disabled people in Wirral at the Bebington Civic Library on 14th January this year. That display of high quality work was the result of a partnership between the Rotary Club and the Conquest Art Group from London. Disabled people in Wirral express themselves particularly well through art. We need to help both disabled children and their families to take advantage of similar opportunities.

Finally, the Government have done much for children. I look forward to the Minister telling us what will be done to help ethnic minority families with disabled children receive the services to which they are entitled and ensure that they do not miss out.

8.20 p.m.

Baroness Howe of Idlicote

My Lords, I, too, thank the noble Baroness, Lady Massey, for raising the Barnardo's report, Still Missing Out?, for discussion this evening.

The Government's aim is to see all children lifted out of poverty. It is a brave aim and they are to be applauded. But it is not an issue capable of a "quick fix". The long-term effects of poverty and deprivation on children's prospects in adulthood have been well known, but inadequately acted upon, for decades. If that is the possible effect on all children brought up in deprived circumstances, there are those within that overall group who are even more clearly destined to fail unless given maximum financial, as well as social and educational, support.

It is clear that disabled children living with families are one such category. More than 50 per cent of them are estimated to be living in poverty. Those children also fall within other government priority targets for action. For example, they are more in need of, and yet find it less easy to obtain, childcare or day-care places. Only one in 20 of those schemes accept disabled children.

When I think back to Lady Allen of Hurtwood and her dedicated work in the 1960s to set up adventure playgrounds, including adventure playgrounds for handicapped children, it seems sad, to put it mildly, that we have not progressed much further in that respect.

Another government priority which I applaud is to encourage a return to paid employment. But that is considerably less easy for parents of a disabled child or children, and of course doubly so for single parents. Not only are childcare costs higher, the likelihood of hospital visits and so forth make it even less possible for that to be a viable option.

Yet, while recognising those extra burdens, in reply to a PQ from me on 29th January, the Minister confirmed that it was still very much a priority for all parents and parents of disabled children. In response to a Written Question from me on 21st November last, she said that in the 10 local authorities supporting the highest number of families with disabled children, the number ranged between 325 and 460. In the 10 local authorities supporting the fewest, the family numbers ranged between five disabled children and 30. Even making allowances for differences in numbers of disabled children living in different parts of the country, that really would appear to illustrate a considerable disparity in the scale of provision by local authorities. Once again, it would appear that post code determines the level of assistance.

A further problem is the limited take-up of benefits. I shall not refer to that because others have. But a more vigorous campaign to get the message across is surely needed in that regard, plus further simplification of the language used in the leaflets and an assurance they will be printed in the required number of ethnic languages.

I want to refer to one last point in relation to suitable accommodation. Barnardo's points to the considerable difficulties and the cost of obtaining the basic housing or housing improvements necessary to bring up a disabled child. Not only is the financial, means-tested help often inadequate, but the considerable delays that occur must cause families who qualify even further strain and distress. Is this an area in which the Minister can offer some prospect of improved service in the future?

I remind your Lordships of two crucial facts. Despite the problems and considerable strains on family life—as mentioned by other noble Lords—which caring for disabled children entails, some 90 per cent live with their families at an estimated cost to the community of £130. I stress that it is only £130. That figure compares with the residential care costs for a disabled child disclosed in a reply to my PQ of £l,400—more than 10 times as much.

It clearly makes straightforward, economic sense, quite apart from the obvious humanitarian aspects, to do everything that we can to support those families in the invaluable role that they play. The alternative, which has been mentioned by many noble Lords, is to see many families driven to the point of giving up in despair. Anyone who watched the Sunday "Panorama" programme two weeks ago would sadly have received an all-too-clear picture of the strains that such families endure day in, day out.

8.26 p.m.

Lord Best

My Lords, in congratulating the noble Baroness, Lady Massey, on initiating this debate, and Barnardo's on its report, I want to underline the crucial importance of housing to the lives of families with disabled children, as raised by the noble Baroness, Lady Howe.

I declare an interest as a director of the Joseph Rowntree Foundation which has produced a series of 11 reports over the past eight years on meeting the housing needs of families that include disabled children. From that body of evidence, I suggest that the housing dimension is a frequently neglected yet critical factor. One of our surveys showed that nine out of 10 families with a disabled child reported at least one problem with their housing. Yet there is usually no agency responsible for mapping those families' housing needs or developing strategies to meet them. As the mother of a severely disabled nine-year-old said, "If you've got your home right, you can cope. Within 24 hours of being in this house, it was like, wow, she was a different child".

The most frequent difficulty is lack of space to play, to take time out, or to use the kitchens and bathrooms. Those problems are a by-product of building much smaller houses in the past 25 years. 'The good news is that the Government's recent introduction of important changes to building regulations—part M—go a long way towards the standards for "Lifetime Homes" advocated by the Rowntree foundation. It means that all new family homes will now be more accessible, with level entrances, wider front doors, more circulation space and a downstairs loo. However, for the vast majority of families with disabled children, the issues are about extensions and adaptations to existing accommodation.

The disabled facilities grant is available to meet adaptation costs. But the DFG system has been creating some serious problems. We supported a group of parents involved in the campaign, "Homes Fit for Children", which focused specifically on this issue, particularly with regard to its very tough means test. Despite their low incomes, 65 per cent of the families surveyed were not eligible for some or any support from the DFG. Most of the families remain to this day in totally unsatisfactory circumstances because necessary changes to their homes are beyond their means.

There are also undoubtedly too many cases of unwarranted delay in processing grants. Our research shows that 20 per cent of families said that they had waited more than a year to hear the outcome of their DFG application, and half of those had been waiting for more than two years. Often the delays resulted from shortages of occupational therapists to assess the child's needs, as was said by the noble Baroness, Lady Masham. During these extended waiting times, assessments become out of date; disabled people or their carers have accidents—a number of them in our survey ended up in hospital; and unfortunate habits of dependency become established.

In summary, tens of thousands of parents are forced to bring up their disabled children in homes that are totally unsuited to the child's needs. While there is no space in which to play during their most important formative years, disabled children can miss out on the opportunity to develop; the poorer outcomes—not to say the cost to the public purse—will be felt throughout the whole of their remaining lives. Parents are left to cope carrying children—who get heavier as they get older—upstairs, to the toilet, and so on. Hidden away behind closed doors, an enormous amount of frustration, unhappiness and anxiety exists within these homes for the want of a move to better premises or the adaptation of the property.

I welcome the news that the Government are now working on the introduction of a "moving grant" which will help "open up the option". I also welcome the recently announced joint circular from the Office of the Deputy Prime Minister and the Department of Health which is aimed at making the system more "joined up" than at present. I cannot commend too highly the refining and accelerating of such measures and others to combat the housing problems which mean that so many families with disabled children are indeed missing out on a decent quality of life.

8.31 p.m.

Baroness Wilkins

My Lords, I, too, thank the noble Baroness, Lady Massey of Darwen, for highlighting the needs of families with disabled children. The debate is particularly timely as there is much concern that disabled children are not being placed at the heart of the current government initiatives concerning children and that, as a result, their particular needs are being ignored. I very much welcome the noble Baroness's proposal to ensure the inclusion of disabled children in the forthcoming Green Paper Children at Risk.

Disabled children make up about one quarter of all "looked after" children and at least 13 per cent of all children identified as "in need". They therefore make up an important group of children for whom social services departments should be providing support. For example, we know that increasing numbers of disabled babies with high levels of needs are surviving into childhood and adolescence. Their parents often struggle to provide the 24-hour care that these children need, which sometimes involves nursing care. As we saw in last week's "Panorama" programme, which has already been mentioned, parents make enormous efforts to look after their children at home, but they need a break from caring at regular intervals and also help in emergencies.

The most popular services with parents are the family-based short-break services where properly trained and paid foster careers provide high-quality care, enabling children to stay for short periods of time to give their parents respite. However, far too often these services are not available, either because local authorities do not pay enough or do not provide adequate training or support for foster carers. Parents are left desperately unsupported and the children may well end up in some form of institutional care. I should therefore like to ask the Minister what plans the Government have, as part of their Choice Protects initiative, to ensure that this issue of fostering is properly addressed.

Much research concerning disabled children and their families highlights the need for health, education and social services to work together. The Government's plans for children's trusts will therefore be crucial in improving service delivery for disabled children, and it is vital that they are placed at the very heart of this initiative. I therefore ask the Minister whether any of the pilot areas for children's trusts will be focusing specifically on services for disabled children and their families.

Most importantly it is the issue of housing which gets left out of this equation and which needs urgent attention. I endorse the comments made by the noble Lord, Lord Best. A significant number of disabled children live in housing which severely restricts their social development, their education and their life chances. Their parents suffer permanent back injuries, acute stress and unemployment, yet the disabled facilities grant—the DFG—the mandatory adaptations grant, which is supposed to meet this housing need, is excessively protracted, bureaucratic and largely ineffective. Typically, it takes at least 18 months before agreement is reached that a grant will be allowed.

The means test for the DFG is based only on income. It fails to take any account of real housing costs or the extra costs of bringing up a disabled child. This leads to shameful situations such as that of a family in South Wales whose child is tetraplegic with 100 per cent care needs. At the initial assessment: it was calculated that the family would need to contribute £3,000 towards the adaptation costs out of the husband's £17,500 salary. However, during the 18 months while the DFG was being processed, the mother went back to work for just six hours a week in a local disabled children's centre. As a result, the family's final contribution went up to £9,000, making it impossible for them to go ahead.

As the recent research by the Joseph Rowntree Foundation has shown, a third of the families who applied for DFG had been assessed as needing to make a financial contribution and a third of those families had not had the adaptations carried out because they could not afford the contribution. Only a minority of families had received help from statutory agencies in addressing their housing needs. Will the Minister say what plans there arc to review the disabled facilities grant system so that it can properly meet the needs of disabled children and their families?

8.36 p.m.

Lord Addington

My Lords, I thank the noble Baroness for bringing this debate to the House. I feel slightly humbled by those who have spoken. Their remarks make one consider certain aspects of disability, which, if one comes from outside the issue, one can only start to understand with others' help. Also, I have just become a father and one of the most frightening of the many descriptions that I have heard of the carer's job is of their having to look after an adult in the way that they would have to look after a baby. It is one thing getting grumpy at having to lug a 20-pound child around the house, but an adult or someone who is close to being an adult is a different matter. The problems, the stress and the wear and tear that that could cause are frightening.

The Government's record on helping those with disabilities and children is okay—I give it a pass mark—but they should be doing slightly better. They have increased benefits in certain areas and they have made good progress in certain others. However, there is one huge hole in the middle of their provision—the low take-up of benefits. I have received briefing that suggests that—give or take a few per cent—half of the people who should be claiming DLA are not.

There is little point in the Government allocating resources—I do not know whether they have allocated enough resources for everybody who is entitled to claim. but presumably they would meet the need if it arose —if we do not get people actually to claim the benefits. The overall cost to society of the knock-on effects of keeping people in poverty, such as the breakdown of parents who take on the long-term care of these children, has been pointed out by many who have spoken in this debate already. It could be catastrophic for the Government unless we manage to get benefits through to them. Unless we can find a better way forward, there will be a crunch in the near future. Perhaps I am being alarmist, but if there is not a crunch there will be long-term steady grinding and creaking.

We must do something more. The noble Lord, Lord Chan, pointed out the problems of putting things in the right language for those who are trying to claim. That shows just how difficult the situation is. Those who work in the field of disability always come to one conclusion: that those who are going to be disabled, particularly as children, should choose their parents carefully. If they happen to be the child of an accountant and a lawyer, they will get their benefits and the necessary support in the education system and everywhere else. If, however, their parents happen to have literacy problems or problems with the language of their adopted country, they will not.

The Government have one beacon of hope in this field—the one-stop-shop programme, and the interview arrangement. The pilots of those projects have started, but how far have we got? The arrangements did not deal with the whole panoply of benefits. I have for a long time felt that although we can make the system simpler, it will never be very simple. We must integrate all such benefits. Are the Government considering extending the interview arrangement across the entire range of benefits, and will they consider integration with social services and care assistance? The links between those areas are so obvious that they need no explanation, and such integration must be considered. If that is done, the Government should be able to give a definitive answer about how good their system of benefits is. Until that is done, we do not know how good that system is.

I turn to a question that I have repeatedly asked the Government over a long period. We accept that pensioners across the board receive the winter fuel payment, but why not people with no mobility capability? The fact that they do not is absurd. An extra fuel payment might be in order for half of the children mentioned in the briefings examples that were provided for our debate. Someone who is incontinent will need increased washing facilities. I return to the example of a new baby. One discovers when one has a new child—I am probably the 40 millionth person in the country to discover this—that the washing machine is never off. If the clothes are bigger and washed more frequently, costs will be higher. It is absurd that we do not deal with such problems. The Minister may say that certain other benefits are supposed to cover those costs, but they have never been properly factored in. The case with regard to heating costs is utterly unanswerable.

I could go on for much longer but time is against me. Unless the Government give a firm commitment to ensure that everyone who is entitled to benefits receives them, they are failing not only the people concerned but also themselves and their policymakers.

8.42 p.m.

Lord Astor of Hever

My Lords, I am pleased to have the opportunity to contribute to this important debate and I, too, congratulate the noble Baroness, Lady Massey, on introducing it and on attracting so many speakers. I also congratulate Barnardo's on its informative and detailed report. I know that many people were involved in its formulation and research, such as Contact A Family, and I pay tribute to the efforts of all those involved. I also congratulate the noble Lord, Lord Addington, on becoming a father; that is a very important milestone.

The Government made the eradication of child poverty one of their principal long-term goals. In 1999, the Prime Minister pledged to end child poverty within a generation. "Our historic aim", he said, will be for ours to be the first generation to end child poverty". When Labour took power, more than 4 million UK children lived in officially "poor" households. The Government promised to cut that figure by more than a million in their first term. In the run up to the previous general election, the Chancellor repeatedly said that Labour had rescued 1.2 million children from poverty. However, household income figures published by the Office for National Statistics in April last year undermined the Government's claim. Those figures showed that, at best, half a million children had left poverty, on Labour's preferred definition, meaning that the poverty rate was roughly where it had been in 1994–95.

I am sure that the noble Lord, Lord Best, will be aware of the annual poverty report by the Joseph Rowntree Foundation, Monitoring poverty and social exclusion 2002. That revealed that the number of children lifted out of poverty since 1997 was around half the number claimed by Ministers. Therefore, despite substantial increases in expenditure on benefits, the Government are still a long way from hitting their own poverty targets. That is particularly the case in regard to families with disabled children. As Roger Singleton, the chief executive of Barnardo's, wrote in the foreword to the report: there is little evidence from the case studies in this report that current initiatives are improving the lives of disabled children significantly". Can the Minister say what measures the Government have to address some of the problems highlighted in the Barnardo's report for disabled children and their families? In addition, can she also explain what role the new children's trusts will have in providing support and assistance to disabled children and their families?

The noble Baroness, Lady Howarth, rightly pointed out that children are living longer thanks to medical advances. They are surviving premature birth in far greater numbers although many of them develop mild and more severe disabilities as they grow. While that is positive from a medical perspective, it is a life sentence for the worn out and emotionally wrecked families of the children. The noble Baroness, Lady Masham, pointed out the many struggles that parents of disabled children face in obtaining vitally needed services such as equipment, special food and so on.

The noble Baroness, Lady Massey, mentioned the cost involved in caring for a child with a disability. The parent caring for a disabled child is less likely to be employed. If a parent works, he or she is likely to receive low pay. Families caring for a disabled child are less likely to own their home and there is a higher incidence of family breakdown. Such families are more likely to suffer from ill health. Statistics show that raising a child costs on average £7,500 in 1997 but raising a disabled child in that year costs £125,000 on average.

As Barnardo's rightly points out, Most poor families do not have a disabled child; but … many families with a disabled child do live in poverty". I hope that the Government take heed of the report and will endeavour to address some of the alarming concerns that it has revealed.

8.47 p.m.

Baroness Andrews

My Lords, I am extremely grateful to my noble friend Lady Massey of Darwen for giving us the opportunity to explore an issue that is dear to the hearts of so many noble Lords. I also thank Barnardo's for a report that is so much in its historic tradition of champion of poor children and of children who are disadvantaged in many different ways. The Government will read the report very closely. We are grateful that we are recognised in the report as a good government for children and a government who have achieved much in raising living standards for families in poverty and coping with disability. Those two matters are closely linked.

When I read the report I was aware, as has been stated, of the incredibly heavy burden that is borne by individual families and of the grace with which they bear that burden of care. I pay tribute to that. I was delighted that everyone had three extra minutes in which to speak as I would have been worried if the excellent challenges to the Government had been sacrificed due to time constraints. I shall take a little longer to reply. I shall not be able to answer all the detailed questions that have been raised, but I shall have pleasure in writing to noble Lords, and in circulating correspondence, if I cannot address all the matters.

I would like to show the extent to which the Government are giving priority to disabled children. I hope to reassure the noble Baroness, Lady Wilkins, that they are at the heart of policies for ending poverty, but also at the heart of children's policies and health policies as well.

Tackling child poverty as a whole is extremely complex: it is multi-dimensional. It is about extra investment in healthcare and education as much as in raising benefit. It is about improvements in the system which enable young people to transfer into adulthood as much as it is about securing early intervention.

I am extremely pleased that the noble Baroness, Lady Massey of Darwen, focused on health and social services because they are so crucial. We have the greatest pleasure as a government in seeing this debate as very much part of the continuing dialogue between us about the rights and needs of disabled children. We warmly welcome the opportunity for further debate and discussion suggested by the noble Baroness. As part of that discussion, we hope to involve the voluntary sector as we always try to do. They are extremely important partners in everything we do in informing ourselves of the needs of the community.

The areas of concern that have been mentioned include raising national standards of care and provision for families and promoting better coordination on the ground. Many examples have been given of how assessment is slow and co-ordination is not happening, and of the need to make greater progress. Another concern is amplifying the voice of disabled children and their families in that process. The first two aspects complement each other because we know that one of' the great failures in the delivery of services to disabled children and their families has been the fragmentation of services, the lack of coordination and sometimes competition between services.

What we heard about the Climbié report in this House brought home to us exactly what is meant by the failure to join services together. It is not a point for debate: we all know that we need a more integrated system, not least for the very severely disabled children about whom the noble Baroness, Lady Howarth of Breckland, spoke.

We aim to raise the standard of children's services not by setting new national targets, as the Barnardo's report suggests, although we understand that, but through a framework of new national standards which will require joint working across the NHS, the social services and education. We do not believe that simply setting targets will automatically achieve better outcomes, but that is what we want.

We want services that overcome variations in local delivery. We want services which are sensitive to the individual needs of families and children and which allow for a local say. That is why we are devolving power in the NHS down to the primary care trusts and other front line services. That is why we have vested so much work, effort and hope in the new National Service Framework for Children. There is a specific element in that dealing with disabled children.

Next month we shall be publishing the emerging findings and there will be information about disabled children. We shall also be producing something about acute services for children at the same time.

The noble Lord, Lord Chan, was concerned about the needs of ethnic minority children. He was a most eloquent champion of those needs. The NSF pays particular attention to the needs of such children. To take up the point made by the noble Baroness, Lady Howarth, an external working group is considering the needs of severely disabled children as well. We hope very much that within this broad framework there will be detailed sensitivity to children's specific needs and the recommendations based on them.

I do not expect that the delayed discharge Bill will distract from the priority we give to children. I hope that I can give that assurance. Through the NSF we are looking for a coherent and integrated approach to services for disabled children, which will progress them from the earliest intervention when they are identified by the specialist as having extra needs, right through to social services to support them, then through to their education and beyond.

It is a major step forward in meeting the problems identified by the Barnardo's report and by noble Lords. It goes along with a range of other initiatives which are already in place. The noble Baroness, Lady Wilkins, referred to the Quality Protects project. The noble Baroness, Lady Howe, spoke about the need for more fun, more clubs and more play.

Quality Protects aims to transform children's services. We have earmarked £60 million for disabled children. We have also earmarked the importance of short breaks and respite care. The information coming back to us through the Management Action Plans suggests that Quality Protects is delivering more of these essential services.

Noble Lords who know me will expect me to say how pleased I would be to see more play clubs and activities for children. It is true: they are vital. Too often disabled children are neglected and left out, which is why I am delighted to hear the news about the New Opportunities Fund. I hope that we will hear even more.

Local authorities are also drawing on different partnerships including Sure Start, the Children's Fund and Connexions. Each has given disabled children priority. They are coming together, and I hope, with Quality Protects, to identify more children. These are new, developing programmes. We hope that the extended Sure Start, for example, will make a difference.

We have increased resources. We have planned historic increases in personal and social services from April this year. In addition, there will be £106 million for children next year; a 23 per cent increase. I want to emphasise that co-operation between health and social services is not an optional extra. The Health Act 1999 introduced a duty of partnership. It removed financial and legal barriers. Using pooled budgets, we are beginning to see local authorities working together more effectively.

My noble friend Lady Massey referred to the new Early Support Pilot Programmes. They will test some of the ways in which we can put principles into action to improve services for the very young disabled. It is too early to draw conclusions, but they will be closely monitored, not least in the way in which they aim to provide access to information for families.

Several noble Lords referred to the new specialist children's trusts. That may have been what the noble Lord, Lord Addington, meant when he referred to "one-stop shops". They are coming together with all relevant services to plan, commission, finance and, where it makes sense, deliver children's services.

The noble Lord. Lord Astor of Hever, also raised that point. We will explore a range of models in different parts of the country during a pilot scheme later this year. The range of services may include services for children with disabilities and special needs. I will pass on to the Minister the remarks of the noble Baroness, Lady Wilkins, about the need for such provision. The Green Paper on children at risk will identify radical options to improve services and will look hard at how to improve the multi-agency approach.

An argument has been put forward about the need to improve information in general. We are doing our best to listen to families and what they say they need. In the national service framework we have been referring to external working groups. We are delighted that the group focusing on disabled children is led by Francine Bates, the chief executive of the charity Contact a Family. Through her we are listening to the voices of families and children.

The diversity of those voices and needs argues against a national information campaign. But we see the need to be proactive in making the system as transparent and helpful as possible. We are providing Contact a Family with £0.5 million per year for three years to run the national information centre, which will help.

We are doing something about the problem alluded to with disability living allowance. There are 400,000 claimants. We are conscious that we need to do more to make DLA more accessible, as the noble Lord, Lord Rix, said. We are trialling new disability allowance forms with the help of disabled community representatives. We are investing in new technology, which we believe will help to make systems more accessible. But it is not only national government, local government also has a responsibility. We welcome local government's first stage effort to raise local awareness of tax and benefit systems and entitlements for families with children.

We are delighted that the disabled people's representatives are helping with our programme to modernise services. Their voice is extremely important.

My noble friend Lady Massey raised the issue of the welfare food scheme. We are still in the process of assessing responses to the scheme. It will be recast as Healthy Start. The noble Baroness will understand that until we have assessed all responses, including that of the Disability Alliance, for which we are grateful, we cannot make decisions on detail.

My noble friend Lady Pitkeathley asked about hospital transport. The Social Exclusion Unit is reviewing the linkage between social exclusion and transport and is considering the issue of those visiting hospital as well as those attending. The unit will report in the spring. We hope that we shall have some positive news for her on that matter.

The noble Lord, Lord Rix, asked about Valuing People. I can tell him that the target of 6,000 additional severely disabled children receiving co-ordinated care packages was met. I hope that he will take some pleasure in that.

I shall not have time to address the important issues of housing in any detail, but I take seriously the points made about the delays and means testing. The department will listen to what noble Lords have said on that issue.

We could have a longer debate on the question of financial support and raising incomes for disabled people within the context of poverty. We have looked into the question of minimum income standards. There is no simple answer to the question of which level of income is adequate for all family types. Research throws up different responses depending on what one is looking for. But the Measuring Child Poverty consultation has generated a positive debate. Again, Barnardo's has helped. We shall be publishing preliminary conclusions during the spring. But there is no doubt that the extra costs of disabled children are well documented. The washing machine is on six times a day, food has to be blended and everyone has to help bear the physical and emotional costs of caring for the child within the family. It is clear that poverty makes coping extremely difficult.

That is why in April 2001 we increased the disabled child premium in income related benefits by £7.40 per week. Now 85,000 children get a benefit that is worth more than £35 per week. So we are spending £200 million in 2002–03 on benefits for severely disabled children. If noble Lords wish, I shall write to them and set out the range of benefits which we believe makes a difference to these children and their families.

The new child tax credit, by bringing together all the benefits for children, will make it easier and simpler for working and non-working families to access benefits.

Finally, noble Lords have raised the issue of work and childcare. We recognise the difficulty that parents with disabled children have in accessing formal childcare because often they cannot get out of the house. From April this year the new working family's tax credits will enable such parents to receive help with childcare in their own homes if they are using an approved home child carer. We very much hope that that will make a difference.

I am very conscious that I have run out of time. Along with other noble Lords, I hope that this debate will give the families who are the subject of the report some hope not only from the fact that we have had in this House an extremely well-informed and passionate debate on the predicament of disabled families and their children, but that they will take courage from the fact that we see them very much at the heart of what we are doing in terms of our social policies for children. We hope that we shall have their support to continue doing that.

House adjourned at five minutes past nine o'clock.