Previous Section Index Home Page

12.53 pm

Mrs. Janet Dean (Burton) (Lab): I am grateful for the opportunity to take part in today’s debate. I congratulate the hon. Member for South-West Devon (Mr. Streeter) not only on choosing this Bill but on his speech and the way in which he has worked with fellow Members, such as me, who support the Bill.

I believe that the Bill’s introduction provides a further step towards securing more help for families with disabled children. I pay tribute to all those who have worked so hard to campaign for better support for families who have to cope with looking after a disabled child. I pay tribute to my hon. Friend the Economic Secretary for introducing his ten-minute Bill last year and for his continued support and advocacy for improved provision for children with disabilities; and to everyone involved in the “Every Disabled Child Matters” campaign—Contact a Family, the Council for Disabled Children, Mencap, the Special Educational Consortium and the families who have made their voices heard over recent months.

I pay tribute to my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) and to my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble) for leading the parliamentary hearings on services for disabled children last year. Those of us who took part in those hearings were greatly moved by the stories that parents of disabled children brought to us. We were also impressed by the hard work and dedication of the voluntary organisations, which not only supported the hearings and the production of the report, but continue to advocate on behalf of children with disabilities.

The Government have acted to provide a framework to improve services for children with a disability. Standard 8 of the national service framework for children provides for children and young people who are disabled or who have complex health needs to


23 Feb 2007 : Column 569

Direct payments were extended to parents and carers of disabled children in 2001. As part of the Every Child Matters programme, the Government have increased funding for short breaks through the carer’s grant allocation from £20 million when it was introduced in 1999 to £185 million in 2005-06. The Department of Health has issued guidance through the framework for the assessment of children in need and their families. Through the Carers (Equal Opportunities) Act 2004, the Carers and Disabled Children Act 2000 provides similar rights to assessment for persons with parental responsibility who provide care for a disabled child, but sadly there is no requirement to provide the carer with services following an assessment.

There is good practice and good provision in some areas. Charities such as TreeHouse provide specialist educational services and parental support for children with autism. In my constituency, the development of the children's centre in Burton has brought together services for disabled children and their families, which include community paediatric consultants, with those of nursery and support for children in the local area, not only bringing services for children with and without disabilities together, but bringing together different agencies. However, as we were told at the hearings last year, provision of services for children with disabilities is still a lottery and that cannot be right.

Those of us who are parents or even grandparents will know of the stress that can be placed on a family when a young baby is demanding attention 24 hours a day. It is difficult to imagine the stress that a family with a disabled child face when that lasts not just for one or two years, but for life. Caring without a break for children and adults with severe or profound learning disabilities damages families. Sleep deprivation, moving and handling and constantly being the only person who can provide what is needed can be physically and emotionally draining. Many families provide constant and intensive care. Many disabled children need support to do things we all take for granted such as eating, drinking or dressing.

Mrs. Humble: My hon. Friend highlights parents’ commitment to their disabled children. Does she agree that, sadly, because of that very commitment, local authorities sometimes do not develop services? They rely on families to do everything in their power to look after their children themselves. Local authorities should intervene and help those families.

Mrs. Dean: My hon. Friend is right that, while a family is coping, sometimes there is, I would not say reluctance, but local authorities do not always step in perhaps when they should, partly because of the pressures on them; but that support should be there, without families always having to fight for it.

Constant caring and disturbed nights make families ill, both physically and mentally. It affects their ability to continue to cope. Caring without a break is bad for every member of the family and for their relationships with one another. In Mencap’s “Breaking Point” survey, published in 2006, seven in 10 families said that they provided more than 15 hours’ care a day, and five
23 Feb 2007 : Column 570
in 10 families said that they always provided care during the night. The Contact a Family study in 2004 found that 76 per cent. of families with a disabled child suffered from stress or depression, leading to a high incidence of family breakdown.

There is phenomenal pressure on the main relationships in the family, coupled with tiredness and the monotony of doing the same tasks time and again without a break. Families report many instances of their relationships suffering. On top of the everyday tasks, every family always has other things to do. We can imagine what it must be like for parents when other family members need attention, perhaps simply a child wanting a bedtime story, but they have no time to spare.

Mencap’s survey found that 80 per cent. of disabled children had at least one sibling living in the family home, so on top of the pressures of providing good enough support for the disabled child, the family has other children to care for. Families report feeling torn apart as one parent looks after the disabled child while the other looks after the other child or children. Without the right short breaks, families have no time to feel like a family and carry out the everyday activities that many of us take for granted.

Short breaks are vital. They enable such families to have a quality family life and ensure that everyone in the family is equally and fully supported. Families who take breaks describe them as essential in helping them to continue caring. When families take regular short breaks they say they feel that they can continue to care for their son or daughter. Short breaks are a lifeline for those families; as well as giving the main carer a break from providing intensive support, often without enough sleep, they allow the rest of the family to do things together, or simply to relax.

As a society, we owe it to the parents of disabled children to provide consistent and timely support for their families. At the hearings, we were told the moving story of a young woman whose life revolved around trying to contact and make appointments with various agencies. Her life was transformed when she was allocated a key worker. The evidence at the hearings made it clear that the early support programme is one of the Government’s great success stories. It should be available throughout the country.

Another finding was that the

We should consider relaxing the rule on family members giving child care in the child’s own home to allow tax credits to be paid in circumstances where no other appropriate child care can be found. One of my constituents was unable to return to work because she was not allowed to claim child care tax credits so that a relative could care for her children. The Disability Rights Commission reports that families with a disabled child earn 17 per cent. less than other families, are 50 per cent. more likely to be in debt and 50 per cent. more likely to live in poor accommodation. If we want to improve the standard of living of families with disabled children, we must be more flexible about funding for child care.

Mr. Flello: Although the extended families of young people with disabilities may not always have the
23 Feb 2007 : Column 571
necessary skills and training, does my hon. Friend agree that they are often much better placed to provide respite care and additional support?

Mrs. Dean: My hon. Friend is right. Extended families play a large part in giving such care, and many provide it unfunded and free, but there are times when such support is not available from someone who can afford not to be paid for giving it. In those circumstances, it would be helpful if the person providing such care in the child’s home could be recompensed. At the moment, I understand that the working tax credit does not allow that.

The parliamentary hearings found that the lack of short breaks was the biggest single cause of unhappiness about service provision. As chair of the all-party group on autism, I am well aware that children with autism and many other disabled children are denied short breaks and other services because they are deemed not to meet the threshold criteria for services. A survey by the National Autistic Society showed that only 15 per cent. of parents of children with autism receive any support from social services in their caring role. A Department for Education and Skills-funded study identified respite and family support services as the biggest gap in provision for families of children with autism.

A lack of access to short breaks is particularly unfortunate for families with a child who has autistic spectrum disorder because the need is often more acute. Three in five families with children with autism reported significant levels of psychological distress—more than twice as high as parents in general. Nine out of 10 children with autism have significant mental health needs and/or behavioural difficulties—10 times more than children in general. Short breaks are beneficial for children with autism, enabling them to broaden their horizons by experiencing new environments and activities. Breaks from caring reduce stress on parents and allow them to continue their caring role rather than stretching them to crisis point.

A study found that 87 per cent. of parents of children with autism identified a break from caring as a need that had not been met. The same study found that mothers of children with autism were at increased risk of psychological distress, especially if there was a low level of informal support—from friends and relatives, for example. Caring affects an informal support network beyond the child and the parents, and short breaks benefit everyone in the network. Generic disability services may not meet the needs of children with autism. About 82 per cent. of short break providers want more support and information on autism and parents rated understanding of autism as the most important criterion in selecting services.

I know that the Government recognise that it is necessary to do more to ensure that families with disabled children receive the help and support that they need. In 2005, the report, “Improving the Life Chances of Disabled People”, produced by the Prime Minister’s strategy unit, stated on the subject of short-break provision:

One of the report’s key recommendations was:

This week, there was welcome news of an extra £25 million for short-term, home-based respite care, for carers in crisis or for emergency situations. I know from my constituency casework that there are times when a carer needs sudden medical attention, and the distress of not having someone to care for their child is immense. Will the Minister assure the House that this extra money will include support for parents caring for disabled children? Will he ensure that the early support programme is available throughout the country? Will he further ensure that the carer’s strategy is revised in the light of recommendations from the Treasury-DFES review currently in process? I ask him also to press for flexibility in the provision of child care support to help families with disabled children.

I hope that extra funding will come from the comprehensive spending review and that the Minister can reassure the House today that the lottery of short-break provision will cease and ensure that all families who need support receive it without the need to battle for many years, as some do now.

1.10 pm

Charlotte Atkins (Staffordshire, Moorlands) (Lab): I congratulate all the hon. Members who have spoken so far—it has been a tremendously good debate—and particularly the hon. Member for South-West Devon (Mr. Streeter) on choosing the Bill and promoting it so effectively.

The statistics speak for themselves, and they have been rehearsed very often in the debate, so I do not intend to repeat them, except to say that, according to the Commission for Social Care Inspection, only one in 13 families with a disabled child receive regular support of any sort from their local authority. Putting aside the statistics, I should like to tell hon. Members about a remarkable family who live in Cheddleton in my constituency: the Griffiths family, who are survivors of the system, but only just.

Seven years ago, they—Jackie, Rolf and their daughter, Candice—were devastated to learn that Tilly was born with very severe life-limiting disabilities. Like nearly all families faced with such news, they went through disbelief, denial, depression and isolation. As Tilly requires ventilation and care 24 hours a day, seven days a week, suddenly their world became very small—in fact, just their house. They focused solely on their home, as Tilly needs ventilation, so there was no possibility of babysitting or even of taking a taxi somewhere. There were no trips out. Is it surprising that the majority of families with a disabled child become lone-parent ones and require psychological counselling? The system is geared towards just dealing with crises, when families hit meltdown.


23 Feb 2007 : Column 573

The Griffiths family got assessed for direct payments only when the father, Rolf, collapsed. Those payments have enabled the family to get 10 hours a week help, so the mother, Jackie, can take the older sister, Candice, and Tilly to swimming and ballet. Hon. Members might ask how Tilly does ballet. Her father is very ingenious and created a frame, so that she can dance with the assistance of Candice. For many families, such support comes too late, when the marriage has broken down and when they are depressed and broken by the system, as a result of relentless aggravation and because they cannot get away from one another. That is why the Bill is so important.

Jackie is a remarkable woman. She helped to create an organisation called Special Matters—a group established three years ago for families with children with additional needs. Based in Staffordshire, Moorlands, it is funded by the rural Sure Start that I secured for my area. It consists of a parent support group and an action group, made up of professionals and parents. Parents are empowered to bring about significant improvements, with Sure Start’s generous support.

Special Matters now has more than 160 families—sadly, many of them have single parents now—working with more than 60 agencies. That is the number of agencies that they require to cope with their needs. They are dedicated and focused on improving the provision of services and care for families with special needs. They have created effective parent and multi-agency working parties, which have been successful in improving the quality of service from health visitors, school nurses, children’s disability teams, transport escorts, an early-years referral forum and respite information. The Economic Secretary was so impressed by what Special Matters does that he not only presented it with an award in his ministerial capacity but took up my invitation to visit the organisation on 1 December last year at Rudyard lake in my constituency. The organisation has changed lives. For the first time, families were able to go out together on supported outings. They were not left isolated in their own homes.

The life of the Griffiths family has changed in the last six months, in particular. After a three-year wait, they finally got additional support. As Tilly requires ventilation, she now gets additional help. She qualified for that help three years ago, but had to wait for it. The additional help means that Candice, Jackie and Rolf can go out without having to worry about leaving Tilly at home. They can have the odd evening off, when they can go to meetings, the pub or the park.

The Griffiths family also benefit from a state-of-the-art children’s hospice in the constituency of my hon. Friend the Member for Stoke-on-Trent, South (Mr. Flello). Treetops children’s hospice is a fantastic place. It provides a respite not just for Tilly but for the whole family. Treetops now gets some statutory funding, but it is still largely dependent on charitable donations.

The other organisation that has made a huge difference to the Griffiths family is the Caudwell charity, which was set up by a local business man, John Caudwell. It has provided thousands of pounds for disabled children in my constituency and in the north Staffordshire area. Recently, it provided £20,000 for a new wheelchair for Tilly. The wheelchair allows her to sit and lie flat, and
23 Feb 2007 : Column 574
can bring her to a standing position, so that she can use the lavatory and can see the world as everybody else sees it. It also means that Jackie, her mum, does not have to lift Tilly three times a day. Tilly is getting increasingly large. She is seven years old. The wheelchair will help her for the next five years. So, the Griffiths family survive. It is a miracle that they have not broken down under the strain, but, Jackie tells me, it is still like climbing the Eiger—and they are at the top of the care pyramid.

One would think that, with all those challenges, families with disabled children would get as much help as possible from local authorities. Unfortunately, that is not the case, even when funding is not involved. Let me give the House an example. Sailability is a fantastic project that is based on Rudyard lake in my constituency. It has 70 volunteers and caters for groups and schools, providing regular sailing for more than 1,000 disabled children and adults—either free or at minimal cost. It is a superb organisation. It has accessible sailing boats and dragon boats for all. There is level ground to launch boats and a specialist hoist. Every year, volunteers raise thousands of pounds to fund the activities. The organisation has recently been recognised by the Royal Yachting Association, no less, as a centre of excellence—in fact, its first centre of excellence.

One would think that Staffordshire Moorlands district council would be queuing up to give the organisation support, but one would be wrong. Despite the personal support of the leader of the council, Ron Locker, the planning department has put obstacle after obstacle in the organisation’s way over the last two years. It is blocking planning permission for renewing an existing boat store. The development is vital to protect the specially designed, electrically controlled boats. Without the store, the project will have to close, but that would be absolutely scandalous. I am thus backing the project in every way I know how.

Mr. Flello: I thank my hon. Friend—my good friend—for giving way. Does she agree that such behaviour is typical of many councils throughout the country? Even when they have an obligation to provide specialist equipment for people with disabilities, they find ways time and again to get out of it, to delay the process, or to drag their heels in any way they can. I applaud my hon. Friend’s good work, but does she agree that the situation is typical?

Charlotte Atkins: I do not know whether it is typical, but I am amazed by it, because there would be no cost to the council at all. The Ratepayers-Liberal Democrat-controlled council has been talking about the project for a long time. I do not doubt the personal and passionate support of the leader of the council, but the planning department lives in the dark ages. That is why the review commissioned by the Chancellor of the Exchequer on how we can enhance the life chances of families with disabled children is important.


Next Section Index Home Page