Disabled Children (Family Support) Bill

Speech by Annette Brooke MP delivered to House of Commons on Fri 23rd Feb 2007

I congratulate the hon. Member for South-West Devon (Mr. Streeter) on achieving a high position in the private Member's ballot, and on choosing this particular issue for the subject of his Bill. I have been most impressed by his energy, enthusiasm and commitment over quite a difficult few weeks, as he put everything into trying to achieve what we all wish for-to improve the outcomes for disabled children and their families.

Annette is a long standing supporter of the Every Disabled Child Matters Campaign

The Bill comes at an interesting time when the Government are making great headway on discussing, debating and consulting on these issues. The process started earlier last year with the Government's review for services for children and we now have a policy review on children and young people. I was pleased to attend a meeting at which Lord Adonis specifically referred to the issue of providing services for families with children with disabilities. We can therefore see today's debate as one piece of the jigsaw-part of a very important overall picture, in which we as a nation have to make a greater commitment to families and children with disabilities. As one crucial piece of that jigsaw, I hope that our debate will keep taking us further forward in achieving our objectives.

I was very pleased to serve on the cross-party panel of MPs that was established to conduct hearings on services for disabled children. I would like to congratulate the right hon. Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) and the hon. Member for Blackpool, North and Fleetwood (Mrs. Humble) on their chairmanship and vice-chairmanship respectively. The hearings were, of course, supported by Contact a Family, the Council for Disabled Children, Mencap, the Special Educational Consortium and Children Now. I also congratulate those organisations on the production and launch of the Every Disabled Child Matters manifesto and campaign. The fact that it was necessary to produce a separate manifesto was very telling, because, in so many respects, the needs of disabled children are not sufficiently well covered by the Every Child Matters agenda.

In the submissions to the panel, one feature relevant to most of the much-needed services was the inequality in provision throughout the country. That was certainly the case with respect to respite care. The lack of short breaks was the biggest single cause of unhappiness with service provision in the submissions. Respite care can, of course, take many forms. We have discussed some of them-whether it be day care, an overnight stay, a sitting service or whatever-but what is so important is that we are looking at the needs of the individual child and the needs of the family. We have already spoken about the great number of severely disabled children these days, but sometimes we have to focus beyond that and think about the very individual and distinct needs of every single child.

I recently visited a very good respite centre in York. During a really wonderful visit, I witnessed how quality respite care can be of enormous benefit to the families, as well as to the child. That is a win-win situation, with children getting a change of scene and mixing with other children and, in the case that I have just cited, receiving high-quality care with superb resources. In my short speech, I should like to explore the benefits of short breaks to children and families.

As the hon. Member for South-West Devon said, in the past week, much media attention has been given to the United Kingdom's rankings in the UNICEF report on child poverty and well-being. One of the dimensions considered in the report was family and peer relationships. Although difficult to measure, it was found that that dimension is very important to children and young people, especially in their long-term emotional and psychological development. According to the World Health Organisation, being liked and accepted by their peers is crucial to young people's health and development, and those who are not socially integrated are far more likely to exhibit difficulties with their physical and emotional health.

Disabled children are generally thought to experience more difficulty in making and maintaining friendships for a number of reasons. Many disabled children often have difficulties in communicating and making themselves understood. They might lack the confidence and self-esteem to enable them to enter into new friendships. But, as well as that, many disabled children lack the opportunities to engage in the activities or situations in which many of us would expect to make friends and enjoy the company of others. In other words, something that we take for granted is not available to all disabled children.

The Bill addresses the support needs of the most severely disabled children. Their families tell of their wishes for their children-to be happy, healthy and to have friends-but many of their children face real barriers to that most natural of childhood activities. Families talk of their wish for their children to have short breaks that will allow them to have experiences appropriate to their abilities. Obviously, short breaks not only support the family carers, but provide an opportunity for disabled children to have a break from being cared for by the same person all the time. They can experience new opportunities, such of leisure activities, some of which we have heard about today.

The better the break for the disabled child or adult, the greater the benefit for the carer, who knows that the person for whom they care is being well looked after and having a good time. For all of us mothers, what greater pleasure is there than our children coming home full of joy because of their experiences? I want that to be available to every child. Without good enough short breaks, disabled children are denied a basic right to play, to enjoy new experiences and to make friends. The Bill would ensure that disabled children get access to the right type of breaks to meet their needs.

A survey by Mencap in 2006 showed that six out of 10 families did not get short-break services or, if they did, that the service did not meet their needs. Frequently, the reason cited was that the facilities and activities were not appropriate for the disabled child. Families talked of the need for the type service to match their child's needs and for activities appropriate to the child's age and ability. Of course, appropriately trained staff and the appropriate facilities and type of provision that would give the child the most enjoyable break are so important.

A parent who had been asking for appropriate respite care for nearly two years recently contacted Treehouse at her wits' end. That care's failure to materialise had led to the breakdown of her marriage. She was referred to a short-break service, but after an initial assessment of her child, she found out that those involved did not feel that they would be able to manage his behaviour.

It so hard for parents when they realise that, in theory, they are entitled to short breaks, but because of the specific requirements, they might still be unable to gain access to them, or the parent might not have the confidence to let the child take the opportunity. That is a tragedy because we can achieve a lot more within the existing resources by pulling and working together, as well as doing a lot more if we are successful in our aims in the comprehensive spending review, and I hope that such bids will be made.

We have had many representations from the National Autistic Society. Obviously, that condition is high on the agenda and well known to most MPs, because it is a growing, recognised condition. In my area, not enough support is provided. There is a big time lag between identifying the needs of children on the spectrum-particularly at the more severe end-and providing appropriate education and care. As politicians, we are rightly focusing on that, but we have a long way to go. It is not surprising that it is really difficult to find the right sort of respite care for, say, a child who gets upset if everything is not in precisely the right order, which is a common characteristic of the condition. Everything on the plate must be in a certain position. A highly trained carer is needed to make sure that the child has a good experience.

Mr. Flello: Does the hon. Lady agree that, often, it is important that there is continuity and that the same highly trained carer assists the family in those situations, wherever possible? In the case of young people who have conditions on the autistic spectrum, often it is not only the regimented order, but having the same, familiar faces that is important.

Annette Brooke: I thank the hon. Gentleman for his intervention. That is absolutely the case and we could apply that right across the spectrum of all disabilities. For families to have the confidence that their child is going to have a good experience in respite care, they need to know the carer. That is important and it flags up what we are all saying: we have a lack of capacity, in terms not of only buildings, but people to provide these essential services.

Another respect in which the individual child gains is that good short-break provision can help to prepare a disabled son or daughter for a future independent life. Parents who come to our surgeries worry about how their children are going to cope as adults, as they, their parents, get older and older. That is such a weight on people's minds. Anything that can contribute to developing the independence of the child has to be seen as a good thing. By providing disabled children with good enough short breaks-breaks that are appropriate and meet their support needs, while giving them opportunities to do new things and develop new skills-we are assisting them to prepare for the future that they, as individuals, deserve.

We have mentioned the heavy toll on parents who have children who need round-the-clock attention and who may become active late at night. It is difficult for those parents to maintain a lifestyle that is comparable to, say, that of their neighbours. We know that there is a high rate of unemployment among parents with disabled children and that there is a high level of parental separation. That level has been cited as being as high as 80 per cent. among parents of children with autism, which is a staggering figure, but it is not surprising. When I have been stressed with my children, I have thought, "My goodness, I'm so lucky. I haven't got a fraction of the challenges that other parents have. How on earth would I cope if I was in that situation?" My heart goes out to parents who are able give their children that level of care. That is why it is important that there is a point at which the state steps in to give support, rather than to interfere.

Mention has been made of a striking comment that was made by a parent when evidence was being given to our panel:

"You have to be at breaking point for help. My child is severely disabled; she meets all the criteria, yet I had to have a breakdown to get help."

I do not apologise for repeating that because it shows very well that we have to intervene with support before the breaking point is reached. We realise that parents desperately want to keep their children in the family setting if they possibly can. Extra support from education and respite care makes that possible. City of York council has definitely run an invest-to-save policy. It has deliberately invested a great deal in respite care, which has made it possible, when it is the right thing to do, to keep the child in the family, instead of using residential care.

We have referred to the postcode lottery for respite care. People who move to my constituency are shattered when they find out how little they are eligible for compared with those in other areas. It must be doubly hard for people to cope with moving between areas with different provision. I have said a lot about benefits to children, but such support obviously has the benefits of keeping the family together and giving parents and siblings quality time together. Of course, lone parents particularly need such support, especially because there is a higher proportion of lone parents with disabled children than couples. It must be very hard for people not to have someone to turn to when everything begins to get on top of them.

I recently heard of a bizarre and tragic case. The child, Julie, had been damaged at birth. A large sum of money for her had been paid into funds and managed appropriately. Respite care had originally been provided as a service to Julie's parents, which meant that their income was taken on board. However, when the family moved to my area, the local authority said that Julie's money would have to be used to pay for the respite care because the service was for Julie. The parents saw the sum of money that had been settled on for Julie as being for her future and her care after they had died. It was incredibly upsetting for them to experience two different situations. We must think about the impact that respite has on both the child and the family. It is not very pleasant for people to have to think about where the money should come from.

I recently heard of a case relating to a situation that the hon. Member for South-West Devon mentioned: a disabled child who goes into respite care is almost

categorised as a looked-after child. My constituents found that incredibly upsetting because they did not want their child to be categorised in such a way. Of course, we want adequate child protection measures, but the situation shows that the way in which we handle things is important. We are dealing with families with enormous strains on them already, so we need to get both the big things and the small things right as we communicate with each other.

There is a children's hospice in my constituency of which I am a patron, so I suppose that I should declare an interest. We have been fundraising for the hospice, Julia's House, since 1997, although it officially opened only last year-it has been an enormous haul. It offers an outreach service and day care, and it is only now moving towards offering overnight care, because it has had to be built up gradually, as it has been entirely dependent on raising funds locally. The Government have allocated £27 million to children's hospices to cover the gap from previous lottery funds, and I am so pleased about that, but the hospice might not be eligible for a share of that money, because it was not offering the full range of services on the prescribed date. I warn the Minister that he can expect letters setting out the full details of the matter.

The Bill builds on existing legislation, namely the Children Act 1989 and the Childcare Act 2006, in which I was actively involved. I had great concerns about the 2006 Act, as the Minister knows, because although it was good that we identified the fact that we need to provide child care for children with disabilities, the question was whether local authorities would be able to deliver on that commitment. I still have concerns about whether highly specialised child care can be provided. The Act was oriented towards working parents, but as we know, although many disabled parents are not able to work, they still need child care to help them in their daily lives.

Finally, I would like to mention the importance of the voices of children and parents in shaping services. That was an important consideration in our review. When we talk about services for children, it is particularly important that we actually ask them what they want, and why they want it. If it is not possible for the child to communicate, we should consider giving much more support to advocacy services. After all, the measures that we are talking about are fundamentally for children. They include support for their families, but at the end of the day, the outcomes relate to children. We must make it possible for their voices to be heard, and we should build the services around what children and their families want and need, rather than trying to fit the families and children into the services that people think that they ought to need.

Link to Full Debate: http://www.publications.parliament.uk/pa/cm200607/cmhansrd/cm070223/debtext/70223-0001.htm#070223109000635