Motion made, and Question proposed, That the sitting be now adjourned.[Huw Irranca-Davies.]
Dr. Tony Wright (Cannock Chase) (Lab): What a pleasure it is to see you in the Chair, Mrs. Dean, not least because we are fellow Staffordshire Members, but also because in this debate I shall draw in particular on the work of a Staffordshire organisation that you will know about. I begin by saying how much I appreciate, and pay tribute to, the work of many hon. Members on the issue of care and facilities for disabled children. Those hon. Members have given much time and energy to the issue, and a real head of steam is building up to say that something must be done.
I pay tribute in particular to my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke), who led the parliamentary hearings on the issue last year, to my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble), who was the vice-chair of those hearings, and to my hon. Friend the Member for Normanton (Ed Balls), who is now happily ensconced as Economic Secretary to the Treasury and who, we hope, can do something about these matters. I could mention many more hon. Members. I refer to this only because it should be recorded that Parliament and Members of Parliament have taken a considerable interest in the needs of disabled children in recent times and have sought to advance their cause. I simply want to add my own little bit to that today.
My involvement in the issue has been prompted almost entirely by the fact that there is a rather remarkable organisation in my constituency: the Birth Defects Foundation, now known as BDF Newlife. It is presided over by a formidableI hope that she will not mind me calling her formidablewoman called Sheila Brown, who, since creating that organisation in 1991 to campaign for the needs of children born with disabilities and to offer them and their families support and assistance, has created an absolutely extraordinary organisation. She has warehouses of goods supplied by major clothing retailers. People come from miles around to buy the garments from Marks and Spencer, Laura Ashley and all the other retailers at heavily discounted prices, and it has become one of our major local industries. It is a tremendous tribute to Sheila Browns energy and imagination and those of the team that she has assembled around her that we now have the privilege of having such an organisation based in the constituency. In my remarks, I shall refer in particular to a report that the organisation has just produced; indeed, it was launched at a reception in the House last week.
Until I had contact with BDF Newlife on this issue, I had assumed, as I suppose most people in our society
had assumed, that for children who were born with severe disabilities and needed special equipment simply to function, whether that was a wheelchair, a special buggy, a special bed, a hoist or a walkerjust the things required for normal lifethere was a system out there that provided them. It would have seemed to me some years ago inconceivable that we might have an arrangement in our society whereby children who were born with such disabilities and needed very basic equipment to function should not be able to get it, but that is the situation.
BDF Newlife discovered in the course of its normal work of providing support and help to the families of children with disability that it was increasingly being asked for help with items of basic equipment. Those were the requests coming in from the nurse helpline that it has as one of its functions. The organisation, being what it is, decided that it ought to try to do something about that. It set up a specific grant scheme so that it could fund some of the basic equipment for which it was receiving an increasing number of requests, and it has been doing that for the past three years.
In the first year, BDF Newlife provided £37,000-worth of equipment; the following year, it provided £500,000-worth of equipment; and, in the last financial year, it provided £750,000-worth of essential equipment. The organisation provided the equipment in a way that obviously was a lifeline to the families who approached it. By having an extremely fast turnaround system, sometimes the organisation was even able to provide the equipment on the same day on which it was asked for. It was able to give the grant, acquire the equipment and deliver it all at the same time. Obviously, the organisation could offer a hugely positive service to families who were turning to it.
BDF Newlife discovered also that many of the requests were coming from professionalspeople working in health and social services. They were themselves approaching the charity directly to ask for the equipment that they knew the families they were dealing with needed but which they could not supply. That led the good people at BDF Newlife to think, Its not enough that we provide this service ourselves. We need to know whats going on out there. We need to know why people are turning to us in these numbers for the kind of equipment that they are asking for. They concluded that the system of public provision of essential equipment for disabled children was crumbling. The effect of that was that people were turning to charities.
What did the people at BDF Newlife do? They asked the families who approached them why they were having to approach them. They asked the professionals who were coming to them with requests why they were coming to them, so that they could find out what they were saying. Very imaginatively, they wrote to every Member of Parliament who had in their constituency a family to whom they had given a grant, telling the Members of Parliament why it, as a charity, had had to give a grant for basic equipment for a child or for a family in those constituencies. The effect of that was that many hon. Members were able to intervene with their local primary care trusts or local authorities to try to ensureindeed, they succeeded in ensuring in some casesthat provision was made.
Then BDF Newlife decidedthis is the initiative that has produced the report that I want to draw to the Houses attentionto ask every PCT and local authority in the country about the amount of money that they were spending on basic equipment for disabled children. The people at BDF Newlife found that that information was not available: it was not available from the Government; it was not available from normal sources. They had to go out and find it and they did that by using the Freedom of Information Act 2000. I have to confess that that was not my suggestion to them; it was their own idea. They therefore made a freedom of information request to every PCT and local authority. Let me say in the margin that if anybody needed persuading of the value of introducing freedom of information legislation and the need not to restrict access to information, as is proposed in some quarters, the details that BDF accumulated, put in the report and brought to the attention of the House under freedom of information legislation stands as a glowing and obvious testimony to the value of that legislation.
What did BDF find? It found that many organisations did not know how much they spent. Of the PCTs that responded, 35 per cent. could not provide the necessary information. Of the local authorities that responded, only 30 per cent. could provide a figure, and 56 per cent. claimed to have no responsibility for provision. There were huge variations. Of those PCTs that reported spending money on equipment for disabled children, the lowest placed spent £504, while the highest placed spent £442,000. The lowest-placed local authority spent £850 on equipment, while the highest placed spent £302,000. Four PCTs in England reported spending nothing at all on equipment. On average, PCTs spent only £45,000 on equipment for disabled and terminally ill children, while local authorities spent only £58,000 on average on equipment. On average, therefore, PCTs and local authorities spend as little as £30.42 on equipment for each disabled and terminally ill child. One has only to compare that figure with the cost of some of the equipmenta special wheelchair can cost several thousand pounds, a special bed can cost more than £2,000 and a special car seat can cost many hundreds of poundsto know that such spending figures, although not inadequate, bear no relationship to the need that we are talking about.
If that is the position that the report documents, the question is what happens and who takes up the slack. I raise that question because, as we know, about 30 per cent. of families with a disabled child live at or near the poverty line. The answer is that several things happen. Charities take up the slack, and BDF itself spends more than any PCT or local authority on equipment. The report shows that all the charities together spend more than £4 million on basic equipment, which is a quarter of all statutory spendingan extraordinarily high figure. As we know from comments by professionals in the report, those who provide statutory services in some areas have a policy of applying to charities for equipment, because they know that it is needed, but they cannot provide it themselves, and they do not want it to be the first claim on their budget. They know that the charitable sector exists and they draw on it.
What happens beyond that? When they can, families pay for equipment themselves, and some run up considerable debts. If a child needs equipment, what parent would not try to get the money from whatever source they can, even if that means accumulating a debt that will last for many years. In many cases, that means going without, which has consequences for the childs health and well-being. We all know about that, and if we do not, it is documented in the report, in which hundreds of families tell their stories and describe what it means for the lives of their children to acquire essential equipment or to have no access to it.
How can such things happen? They happen because there is not enough money, because not enough priority is given to disabled children and because of overlapping responsibilitiesall things that those who have looked at the issue have discussed endlessly. The result is frustration on the part of professionals working in the field and frustration, anger and distress on the part of families who have to cope with the situation. Other factors include long waiting lists, the inability to turn assessments into equipment in a timely way and the fact that it is the wrong time of the financial year, that budgets have run out and that people with complex needs that require a range of equipment can have only one item.
Provision for children also seems to be inferior to provision for adults. I was interested to read the legal advice that BDF Newlife took for its report. It asked leading counsel to go through the range of the provisions that might explain why it is so difficult to get the necessary equipment and to look at the framework of current provisions that it might be suitable to use. In her legal opinion, the barrister draws attention to the difference between the provisions made for adult services, where there is an attempt to draw up eligibility criteria, with banded assessments that have consequences in terms of services, and childrens services, where there is a lack of equivalent provision. Speaking of the system for adult services, she says:
It follows that, if a service user was assessed as being eligible for community care services, it would not be acceptable then to:
a. State that there is no budget, or that the budget has run out, or that...equipment cannot be provided until the next financial year;
b. Place a person on a lengthy waiting list that had the effect of further restricting access to equipment or rationing provisionthis is a disguised form of (a). The service must be provided within a reasonable time; or
c. Offer unsuitable equipment or vouchers which will not cover the cost of the equipment which is needed;
d. Limit the numbers of pieces of equipment which will be provided to a fixed number, eg one or two.
As far as I am aware, there is no central guidance on eligibility criteria for childrens services which mirrors Fair Access to [Adult] Care Services. However, the standards set by that guidance are relevant, and there is no rational reason why eligibility criteria for childrens services could or should be more restrictive than those for adults (there are arguments that they should be less restrictive).
That brings me back to the context of my argument: I have been working my way through this issue recently.
There is no shortage of law, guidance, commissions or reviews relating to almost the entire issue. There has been a national service framework, the strategy unit has done a report and there have been comprehensive
reviews of wheelchair services. It is not as though the subject has not been visited; it has been endlessly visited by people who have endeavoured to make improvements and have described what best practice would involve. In the end, however, we are still in the situation set out in the report, which builds, of course, on reports by Whizz-Kidz, Barnardos and others. Evidence still accumulates about the lack of provision, and every study has recognised the position.
I have concentrated on equipment, because of the work done by BDF Newlife, but what I say on the subject exemplifies the general problems of providing services for all disabled children. A report on services for disabled children produced in 2003, not by a campaigning group but by the Audit Commission, said:
We found a lottery of provision. The services that disabled children, young people and their families are offered depend largely on where they live, and on how hard parents are able to push... We found too little provided, too late. Service provision is rarely based on the priorities and needs of individual families. What is provided is often too little and too late to make the best possible improvement to their everyday lives... We found a jigsaw puzzle of services. Families have to struggle through a maze of services to track down essential information. They then have to jump through a series of hoops to try and gain access to support. When they manage to be considered for help, families are asked to repeat their painful stories over again to a series of different staff. Services tend to work to their own priorities rather than plan jointly, so families fall through the gaps between services.
As I have said, it is as not as though we have not been told, many times, about the inadequacies of service provision for disabled children and their families. The detailed information that BDF Newlife has now produced about the equipment side of things underpins that general point.
What are we to do? That is the question that we want to engage with. Everyone who has looked at the question says the same kind of thingthat we need clear responsibility. We need to know who is responsible for providing services. Families should not get bogged down in the network of divided and overlapping responsibilities. We could at least achieve that. There should be some kind of standardised assessment procedure, so that wherever people lived, they would be assessed against a standard on which everyone would agree. We must ensure that funding actually follows the assessment and does not enter a black hole from which nothing can emerge. There seems, also, to be complete agreementit seems to me essentialthat families must have a single person who can work with them to negotiate the maze of provision that the Audit Commission describes. Peoples testimony shows how important that help can be, whether we call the person providing it a key worker or a co-ordinator.
A broader point arises from that, about public services as a whole: the more complicated, disaggregated and fragmented public services become, often for good administrative reasons, the more impenetrable they become for the people who have to use them and the more important it becomes to try to build in the access routes to those services for people who do not, and should not have to, understand the complexities of provision. I increasingly take the view that we should specify what people are entitled to, in as many areas as possible, and that we could well include the provision of equipment for disabled children in that
approach. Using a standardised assessment we could decide what basic equipment a disabled child and their family were entitled to. We could then ensure that that entitlement would be delivered. They would carry the entitlement with them. We could discuss the methods by which it could be delivered. As we know from wheelchair schemes, in principle, there is a variety of delivery routes. The key point is that, if people had rights and entitlements, whether to equipment or to short breaks or other things, it would transform the relationship between the provider and the person using the services. In public services generally, and particularly in the sphere that we are discussing, we should explore that route.
We maythis is my view rather than anyone elsesneed to think seriously about how to involve the third sector in doing some of the work, so that we do not simply bleat about the inadequacies of public provision but find a more dynamic system, built on entitlements, that will deliver in a way that the families and children in question need. When we launched the report last week, I raised in passing with the families who were present the question of whether it would be a good idea for organisations such as BDF Newlife to be involved in delivering services, and a great cheer went up. Those peoples experience of dealing with such an organisation has been wholly different from their experience of trying to extract things from statutory providers. I hope that that approach can be explored.
I am extremely grateful to the Minister for taking the trouble to come to the launch of the report in the House last week. It meant a great deal to me, to BDF and to the families who were there that he came along and said what he did. I am grateful for the fact that the Treasury is undertaking a serious review of childrens services, with a focus on disabled children. We shall shortly see the fruits of that in the comprehensive spending review. I am grateful, too, that my hon. Friend the Minister is also conducting a review, with particular reference to equipment, thus leading to the expectation that, finally, the analysis will convert into action and the problems that have been identified will be remedied.
We know, in detail, what the problem is and we now need to know, in detail, what the solution is. BDF believes that one in three of the 750,000 children who have disabilities has difficulty accessing basic equipment250,000 children who speak for themselves or whose families speak for them in the report. Every day, another 125 children with inborn disabilities arrive to be cared for. The report is called, Its Not Too Much to Ask and contains examples of good things that are happening and of good people on the ground making real efforts to make the system work better. However, the system should not be a patchwork. How people are treated should not depend on whether they live in an area where a certain person works their socks off to help people to access the system. The families of children with disabilities should be entitled to get the basic equipment that they need, wherever they live. That is not too much to ask.
Mrs. Janet Dean (in the Chair): May I advise hon. Members that I intend to call the first Front-Bench spokesman to speak at 10.30 am?
Mr. Andrew Smith (Oxford, East) (Lab): Getting the right equipment of all kinds for disabled children is crucial, and I congratulate my hon. Friend the Member for Cannock Chase (Dr. Wright) on securing the debate. He was absolutely right to praise other right hon. and hon. Members for their commitment to this issue, and I congratulate him on his work with the BDF Newlife campaign and on his excellent speech.
I am pleased to join my hon. Friend and others in campaigning for the thousands of children and their families across the country for whom getting the equipment that they need is a real struggle, with much avoidable misery. As we have heard, they often need to have recourse to charitable support. In my constituency, we are fortunate to have at least two centres of excellence: the Oxford Centre for Enablement, which is part of the Nuffield Orthopaedic Centre, and the Aiding Communication in Education Centre the ACE Centrewhich, with its sister centre in Oldham, provides support, research and advice on the specialist needs of communication-impaired children. I take this opportunity to thank the staff and volunteers at both centres for their work, which is greatly valued by the children who benefit and by their families.
Those staff and volunteers demonstrate two especially important requirements for successful service delivery: flexibility and teamwork. Flexibility is needed to respond simultaneously to the needs of the child and the wider needs of their family, and to ensure that equipment is changed as the child grows, so that it can cater for their wide range of needs, including play, education, transport, sport and leisure. Teamwork and effective co-ordination are also crucial. Joint working, often across a number of agencies, and working with parents, therapists and teachers to try to achieve the best provision for all the different environments in which their children live and receive care or education is important. Given the range of needs and the rate at which demand has increased, excellent work is done.
Advances in technology can yield liberating changes for such children and their families, but we have to ask how adequate provision is. I get the impression that it is barely adequate for most people in my area. As my hon. Friend has told us, it is often much worse than that across the country; some real horror stories have been reported in the excellent BDF Newlife campaign report that was published last week.
Some of the pressures that are felt particularly in my area have been drawn to my attention, one of which is keeping up with the reviews that are needed to ensure that children do not outgrow their wheelchairs. I was told that wheelchairs are to a disabled child what shoes are to a non-disabled child: they need to be fitted and checked regularly. Priority for assessment tends to go to new referrals and those with acute problems, which can cause delays for routine follow-ups, especially if a budget needs to be stretched out across the year. Another local pressure arises with residential schools. The costs of the ongoing supply and maintenance of equipment falls on services in the schools area, rather than on the placing primary care trusts, and the money does not transfer to support them. I hope that the Minister will look into that anomalous situation.
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