Motion made, and Question proposed, That the sitting be now adjourned.—[Huw Irranca-Davies.]
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 formidable—I hope that she will not mind me calling her formidable—woman 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 Brown’s 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 walker—just the things required for normal life—there 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 professionals—people 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, “It’s not enough that we provide this service ourselves. We need to know what’s 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 ensure—indeed, they succeeded in ensuring in some cases—that provision was made.
Then BDF Newlife decided—this is the initiative that has produced the report that I want to draw to the House’s attention—to 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 equipment—a 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 pounds—to 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 spending—an 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 child’s 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 responsibilities—all 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 children’s 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 provision—this 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 children’s 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 children’s 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, Barnardo’s 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 thing—that 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 agreement—it seems to me essential—that families must have a single person who can work with them to negotiate the maze of provision that the Audit Commission describes. People’s 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 may—this is my view rather than anyone else’s—need 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 people’s 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 children’s 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 equipment—250,000 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, “It’s 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.
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 Centre—which, 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 school’s 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.
My hon. Friend has already covered some of the other important, more general, concerns across the country, such as those about the inadequacy of equipment. There are also concerns about affordability and health services having to demonstrate a health benefit, about manufacturers raising the expectations of families and therapists when they cannot meet those expectations and about the criteria on what may or may not be provided being down to local agreements and decisions and therefore varying enormously.
Funding mechanisms are subject to general NHS efficiency savings and are largely historical, whereas the number of children with severe disabilities who survive and who live longer is, thankfully, increasing. The BDF Newlife report shows that variability in funding is huge. Given that local authority spending varies from £850 to £302,000 and that PCT spending varies from £504 to £441,000, there is bound to be huge inconsistency in provision.
There is a shortage of suitably trained therapists, especially in wheelchair and seating provision, which it is crucial to get right. Funding arrangements for equipment are often complex and may depend on whether something is needed for daily living and basic mobility needs, for education or for social needs, with provision for social interaction often falling to the voluntary sector.
The variability of provision is well illustrated by the provision of communication aids, for which there has never been a properly defined funding stream, perhaps because their introduction has taken off only in the past 25 years. There is extraordinary variability. In some places, the education service will fund voice output communication, but usually only for children who have statements. The devolution of funding to schools has also brought problems, because there is not always enough in school budgets for large pieces of equipment.
In some parts of the country, health authorities will fund some voice output communication aids. I understand that that is the case in Birmingham, parts of London and around Bristol. In other parts of the country, there is no earmarked funding at all. In that sense, the need for funding has never been as comprehensively acknowledged as it is for wheelchairs, even with all the problems that we have heard about, but the difference that communication aids can make in the development of a child’s potential is every bit as great, especially because computers open up such exciting new opportunities to give virtual voices to those who never could have had them before.
Under the communication aids project, which ran from 2002 to 2006, £20 million was spent on assisting children with communication needs at school. More than 2,200 children were provided with communication aids and a further 2,300—mainly students with dyslexia—were given laptops to help with written recording. The project was heavily over-subscribed and many children missed out. Before it came along, some local authorities would not purchase voice output communication aids, which can cost anything from £100 to £9,500, unless they were taken to tribunal. Now that the project has finished, I am told that variability in provision is on the increase again.
The ring-fenced funding that the ACE centres used to receive from the Department for Education and Skills was removed last April on the basis that local authorities should be buying ACE services directly. That is all very well in theory, but in practice, it is a long slow job getting local authorities to buy into those services, so the funding that was lost has not yet been replaced. Furthermore, the Gatsby Charitable Foundation, which has always funded ACE research, will stop doing so in three years’ time, as the centres are having to use its money for core costs—that is not what it was intended for.
We all understand that local authorities have many and competing demands on their resources, but I hope that the Minister will agree that they ought to be given every encouragement and guidance informed by best practice, so that every child with communication needs can benefit from the enormous help that such support can provide.
In a written answer to my hon. Friend the Member for Cannock Chase, the Minister referred to what he called the
“radical review of community equipment and wheelchair services”.—[Official Report, 12 March 2007; Vol. 458, c. 122W.]
May I ask him whether that review includes communication aids, when it is to report and whether it will be able to inform the comprehensive spending review that is due later this year?
I hope that it is clear to everybody that many vital issues need to be addressed. They are crucial to getting the best equipment and support to the disabled children who need it most. Despite the progress that has been made in some areas, the pattern of provision and the funding mechanisms simply are not up to what the public expect of a civilised and caring society. Remarkable progress in disability rights and the legislation that supports them has been made in the past 10 years, but if children are to grow up to make a reality of those rights and to enjoy the entitlements that we legislate to say that they should have to make the most of their potential, they need the right equipment. If there were ever an area that needed a root-and-branch overhaul, so that responsibility, entitlement and funding are clear, this is it, and I hope that the Minister, who has a real personal commitment to this issue, will be able to tell us that we are going to get it.
I congratulate my hon. Friend the Member for Cannock Chase (Dr. Wright) on securing this debate on an issue that is of enormous importance to many Members of Parliament because it vitally affects a number of our constituents. Parliament is fulfilling one of its many roles in giving a voice to the debate and helping to move it up the political agenda. Provision for disabled children is not a party-political issue, so perhaps our predecessors in all parties in Parliament have not given sufficient attention to it, but it is moving up the political agenda. I hope that hon. Members from all parties will work to ensure that we give it the attention that it deserves.
I welcome the fact that the Government are involved in a series of reviews of provision for disabled children, because it is important that we ensure that the public money spent to support disabled children and their parents is used in the most effective way. Part of the problem is that there are many different streams of funding and responsibility is spread across a number of Departments. It might well be possible to achieve an improvement in services simply by spending the existing money more effectively, although I think that more money will probably need to be made available. Given that the two hon. Members who have spoken have outlined most of the issues, I simply want to make a few points about my constituency and then to use the experience of two of my constituents who have written to me in the past few months to illustrate the effect of the deficiencies and problems in the present arrangements on real people—parents of disabled children—in my constituency.
I am grateful for BDF Newlife’s report, which informed me that Milton Keynes council, which is a unitary authority that serves the population of the whole of Milton Keynes, spends only £68,000 on provision for disabled children. I note that that is more than the average but it is still a relatively small sum to address the need in my constituency. My primary care trust, which fortunately covers exactly the same area, spends only £30,000, which makes a total of £98,000 being spent to fulfil this need in Milton Keynes. That sum is clearly inadequate, because, as everyone knows, Milton Keynes is a growing city that has a relatively high proportion of children compared with other places in the UK. We ought to spend more than other places on supporting services for disabled children because we undoubtedly have greater need, but we are clearly not doing so. I welcome the fact that increasingly my primary care trust and council are jointly commissioning services. That is a positive move across the piece, because at least it means that locally there is much more effective working than before between the national health service and the local authority in this area, as in many others.
As I said, I want to try to relate the debate to the experience of real people. I shall not use any names, but I should mention a family who wrote to me in January. Their son has severe myoclonic epilepsy and global development delay, although their older son is not handicapped in any way. They described the difficulties that they were having in funding the adaptations and equipment that they need to install within their home to be able to provide the care that their son needs and to be able to have the normal sort of family life that any family has the right to expect.
The family were entitled to a grant of £25,000 to make the adaptations, but found that that sum was inadequate. They needed £7,700 of the grant simply to deal with the health and safety issues involved in getting their child up stairs. They needed £1,750 for a hoist system and £15,550 for building works. A specialist bed cost £3,500, which occupational therapy could not provide, and they were going to have to find another £3,000 of their own money to have a vehicle adapted to take their son’s wheelchair.
We need to keep stressing the point that the family made, which is that in order to cope at all the mother had had to give up work to become a full-time carer. That put enormous pressure on her husband, who then had to work particularly hard to ensure that the family income was kept up, as it was only he who was able to contribute to it. In common with many other parents in similar situations, they suggested that given the hard choices that they had made—they were not thinking of reconsidering their choices, because they thought that they were the right ones for their family—they were not being given the support from the state that they ought to receive.
The family felt that the existing support systems tend not to help parents who try to help themselves, so in addition to the specific issues that have been raised in this debate, we must think about the way in which all the support that is given through the benefits system and other channels to families in that situation might not be helping sufficiently those families who are doing their level best to provide for their disabled children themselves. Such families simply ask that the state should help them in that work.
The other family wrote to me even more recently—just a few weeks ago. They have a severely disabled daughter. She is eight and has suffered since birth from severe developmental delay, which means that she is more like a six-month-old baby and requires round-the-clock care. She has recently had a major hip operation and needs intensive physiotherapy both at home and at school. She now needs bulky additional equipment, including a standing frame, a special chair because her spine is beginning to bend, a pushchair and a wheelchair.
Again, the mother has given up work to be a full-time carer, and both she and her husband have suffered ill health from the effects of lifting and carrying their daughter. They too are looking to make the necessary adaptations to their home and, they too are finding that the money that is available to help them is inadequate to enable the necessary work to be carried out. They are being offered a way out, which is a sensible way forward for the local authority to advise them of, which is to raise the additional sum by putting a charge on the property. At least the work would be done and they would be given the additional money, but they would have to pay it back when they eventually sell their house.
The disabled facilities grant, which is currently limited to £25,000, is under review, which indicates the need for a comprehensive review of support to parents of children with disabilities. The different grants interact one with another, so if one part of the grant system is made more generous, to a certain extent that simply takes up the slack from other parts of the system. Although I wholly support the specific points that my hon. Friends have made thus far on equipment for disabled children and its funding, I urge the Minister to ensure that the various reviews take an holistic view of all the necessary support and the different routes of funding.
I wholeheartedly support the point that although, inevitably, support will be required from a variety of departments at both national and local level, the system should be made as simple as possible for the parents of disabled children. Those parents should have a single point that they can go to locally to enable them to access all the streams of funding, help and support. They should not have to navigate their way around the system. That should be the job of the local authority, the NHS locally and the Government nationally.
I start by congratulating the hon. Member for Cannock Chase (Dr. Wright) on securing this debate, on making an excellent speech, and on his work to highlight the Birth Defects Foundation’s work.
It has been a useful debate. The hon. Gentleman referred to last year’s initiative, in which the right hon. Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) and Members from all parties, including my hon. Friend the Member for Mid-Dorset and North Poole (Annette Brooke) were involved, of conducting an inquiry into the development of children’s services. That provided an important and useful model of how we in this place can reach out to, involve, listen to and, hopefully, respond to parents, disabled children, non-governmental organisations and the public more generally. The litmus test of that and the useful review over the past year will be whether they result in some traction in respect of the Treasury’s comprehensive spending review; in the more holistic approach to the delivery and design of services that the hon. Member for Milton Keynes, South-West (Dr. Starkey) mentioned; and in comprehensive support, with everyone working together. We must all hope for those outcomes.
The hon. Member for Cannock Chase talked a lot about the excellent work of the BDF and the lifeline that it provides, which is an excellent model of services, not least in terms of the rapidity with which it is able to meet the needs of disabled children and their families. He was also right to identify the grey area between statutory provision and entitlement and what is provided by the charitable sector. I hope that the Minister will indicate how that grey area can become less grey and more black and white, so that both sectors can co-operate when appropriate and ensure that the statutory sector is picking up and shouldering its appropriate burden on behalf of society. The BDF’s evidence is a significantly damning indictment and requires a response from the Government.
Reference has been made to the wider issue of poverty and how it impacts on a family’s ability to meet the costs of providing for a child with complex needs and disabilities. Trying to respond to those needs may cause families to fall into debt. It is clear from my constituency mailbag and discussions with colleagues that a lot remains to be done to raise awareness of the take-up of disability living allowance and other benefits. I agree with what the hon. Member for Milton Keynes, South-West said about that.
Three threads have run through the three contributions so far. None is rocket science. The first is mindset, the second is planning, and the third is delivery. In terms of mindset, the starting point must be a social conception of disability and a presumption that a range of services and support will be put in place that promotes and enables independence first and foremost. We must try to ensure that children lead as normal a life as possible and that ultimately they can have fun, which is part of childhood. That is sometimes lost because provision of fun is not a statutory requirement, but it is critical to children’s development.
On planning, I was struck by the dearth of data—the BDF’s work underlines that—on available spending even within local authorities and primary care trusts. Some PCTs do not know how much they are spending, which is surely a scandal. How on earth can they commission such services if they do not have the data? There is a lack of data on the number, location and needs of families with disabled children, which cannot support good local commissioning. I echo the comments about how essential joint commissioning between PCTs, local education authorities and children’s trusts is. Third sector and independent sector organisations should also be at the table when services are commissioned and developed. That is essential because of the complex range of needs—clinical, educational, developmental and social—that must be met. If services are to be built that are fit for purpose, disabled children and their families should be involved in planning and commissioning, in the way sought by the parliamentary hearings. It is critical to better services that they are tailored to individuals and fit into the lives of the child and the family, rather than being shoehorned into meeting the needs of the service. They must also recognise the transitions between childhood, teenage and adulthood; perhaps more flexibility is needed in that respect.
On delivery, I agree with the right hon. Member for Oxford, East (Mr. Smith) that there should be access to timely assessment—not just the first assessment, but a regular programme of reassessment. Otherwise, equipment ceases to be fit for purpose and children’s development may be stunted because they do not have access to the right equipment at the right time. There should be access to appropriate equipment following assessment, without a long wait and negotiations on how to put together the funding between competing agencies that are scrabbling to avoid their responsibilities because of budget pressures. I agree with that point entirely.
I hope that the Minister will say more about the way in which access to one point that helps with navigation around the whole system can be made the norm. I hope also that the Minister will say something about portage. From my experience of my local children’s trust, I know that portage has played an important part in helping families to navigate their way around the system and, indeed, to lead their lives. Parents have been able to go back to work, when previously, as the person booking the appointments and making the arrangements, they were not able to work full-time.
The right hon. Member for Oxford, East talked about communication aids. The ability to explain and articulate ideas, discuss choices and express oneself lies at the centre of a person’s quality of life. We in this place take that for granted, but some people, trapped in their own mind, feel like they are in prison because they are unable to express themselves. Although there has been good progress with the national service framework, communication aids projects and integrated community equipment services, there has been a consistent pattern to them all: they have all been pilots. There has not been enough evaluation or learning, and the necessary follow-through of resources and mainstreaming has not taken place to enable such projects to develop a consistent pattern of delivery throughout the country.
I should particularly like to know precisely how a further review of the transformation of integrated equipment services will bear down on the absence of consistency. Others have asked the Minister about that today. In opening the debate, the hon. Member for Cannock Chase made a point about the lottery that still exists in such services. I should like the Minister to explain how the review will provide us not only with yet another insight into what must be done, but with the triggers that will make it happen on the ground, and particularly in respect of communication services. That is what all constituents would like more than anything else.
Will the Minister say something about the funding of equipment services? I am struck by the fact that funding through the scheme for communication aids stopped in 2005. Where is the funding stream to meet communication needs? If a disabled child lacks access to equipment, that is a prison sentence not only for the child, but for their family. Access to equipment may not be the panacea, but it can liberate. After 10 years, some foundations have been laid, which have been referred to in the debate, but there is still work to be done on designing the structure that has yet to be built.
The hon. Member for Cannock Chase rightly said that studies and reviews come and go, and he documented many of them in his contribution. Surely now is the time to resource and mainstream such learning so that we do not return to the debate in 10 years’ time to find that there is still a lottery and that people still cannot access services.
I, too, congratulate the hon. Member for Cannock Chase (Dr. Wright) on securing the debate, and I congratulate him on the moving way in which he opened it. The way in which he has taken hold of the issue based on something that he discovered in his constituency and thanks to the work of BDF Newlife is a good example of the way in which the House works at its best when Members learn about important issues through situations that arise on their own patch. He has done so admirably.
I also thank BDF Newlife for its important work on the issue, particularly in publishing the report before us. Organisations such as BDF Newlife and Whizz-Kidz, the largest supplier of mobility equipment for children outside the national health service, do an enormous amount of important work campaigning on such issues. We must listen to what they say, because it is grounded in their experience of helping families with disabled children, and it gives their messages credibility.
The report by BDF Newlife said that our failure to provide for families of disabled children was a national disgrace. Its phrase echoes the words that the Children’s Commissioner for England, Sir Al Aynsley-Green, used when he said that the services for disabled children and their families were a national scandal. Despite those strong words, it is worth saying, as the hon. Members for Milton Keynes, South-West (Dr. Starkey) and for Cannock Chase said, that the problem is not due to a lack of good intentions from all parts of the House. It is not a party political issue.
Over the past 10 to 15 years, a huge amount of legislation—starting with the Carers (Recognition and Services) Act 1995, followed by the Carers and Disabled Children Act 2000 and the Carers (Equal Opportunities) Act 2004—has sought to address the issues. However, the blunt truth is that it has not worked. When one asks why, one finds that there are structural reasons going right back to the founding of the welfare state. When the welfare state was conceived, in the Beveridge report, it was not designed to deal with the needs of disabled children and their families.
All today’s speeches have touched on the point that disabled children and their families need a co-ordinated approach that cuts across agencies, Departments and organisations. However, the welfare state has not been designed to do that. The result is that Mencap, for example, said in a report that it published a few years ago that 37 per cent. of families with disabled children are dealing with eight or more different professionals. In the recent parliamentary hearings on services for disabled children, one mother of a disabled child said that having to juggle 11 different professionals all wanting access to her child had driven her family to the point of breakdown.
The hon. Member for Milton Keynes, South-West pointed out that it is not only the social care system that is a nightmare, but the benefits system. I totted up the number of questions that a family with a disabled child would have to answer to apply for the eight different benefits for which they are eligible: they would have to answer a total of 1,118 questions spread out over 273 pages. Some 80 per cent. of those questions are repeated, so there is a huge amount of duplication in the benefits system, which is critical to such families, and in the social care system, because of the multiplicity of assessments.
The welfare system has not been designed with that group of vulnerable people in mind, but there has been a huge growth in the number of disabled children. The official figures show that their number has increased from 476,000 in 1975 to 772,000 in 2002. We urgently need to address the problem, because all the demographic indicators suggest that the trend will continue and, indeed, accelerate: by 2029, it is expected that there will be another 500,000 disabled children, but that the total number of children will decrease. There will be 500,000 fewer children and 500,000 more disabled children. Of course, it is wonderful that some disabled children now survive when they would not have done so before, but we must be careful about doing nothing to address the serious crisis that will emerge.
Owing to the growth in the numbers of disabled children, there has been a crisis in social services funding, which has already been alluded to. I am pleased that my local authority, Surrey, is one of the top 10 providers in the country. However, elsewhere in the south-east, a special educational needs co-ordinator who was quoted in the BDF Newlife report said about a disabled girl who needed specialist seating:
“Unfortunately in order to fund the buying of this, we would have to look at reducing her hours of (educational) support.”
The choice for that child was to get to sit down or to be taught, but not both. There are other heartbreaking stories in the report. One that particularly stuck in my mind was of the disabled boy who loses his dignity every day because he has to be washed in a garage by his mother, as she can no longer carry him up the stairs. There was also the quotation by a disabled boy, Nathan Giles, who said:
“Waiting for new equipment is like being starved of something, especially when you are not sure if you will ever have it”.
The problem has been compounded recently by the NHS budgetary crisis, which has resulted in a lot of PCTs having to cut right back on funding. We just hope that the situation will improve now that the overall financial position in the NHS seems to be closer to achieving balance.
As the hon. Member for Sutton and Cheam (Mr. Burstow) mentioned, the issue is also important to the Government’s poverty agenda. We know that one in three disabled children grow up in poverty. Having to borrow between £3,000 and £20,000 for a wheelchair can tip a family further into poverty at the precise moment when they should not have to be contending with interest payments on the purchase on top of all their other outgoings.
I want to suggest to the Minister a couple of areas where I think solutions to the problems can be found. One suggestion from Whizz-Kidz is to look at the NHS purchasing systems, to see whether it is possible to get much better economies of scale in the purchasing of equipment. Another suggestion is to introduce a much more fundamental reform of the assessment and commissioning process for services. The Minister will be aware of the £4.75 billion that we spend in supporting disabled children and their families, 26 per cent. of which—£1.25 billion—is used up in the assessment and commissioning process.
I should like to mention the “In Control” pilots, of which I know the Minister is a great supporter. They are taking place in 85 councils throughout the country, including Oldham, which seems to be pioneering the programme, as well as West Sussex and others. Councils have been able to reduce the amount of money spent on commissioning by putting sums of money into the hands of the families. That is incredibly relevant to today’s debate, because the satisfaction level with the amount of money that families receive to help them has increased in those areas from 45 per cent. to 90 per cent. Similarly, satisfaction levels with the services that families receive in those areas have increased from 42 per cent. to 97 per cent. If adopted, that model could transform the lives of many hundreds of thousands of families with disabled children.
In March, the Minister said that there was going to be a radical review. I understand from his website that that review is now complete. Implementation was going to take place later this year, but apparently now it is to happen in 2008. I, too, would like the Minister to say exactly what is happening with the review and its implementation. I know that he is personally committed to change. However, what we want to hear today is not only an expression of sympathy with the plight of so many families, but a determination to ensure that fine words are turned into fine actions, so that all those families can look forward to decent levels of services, which we all agree should never have sunk to such a sorry state.
I congratulate my hon. Friend the Member for Cannock Chase (Dr. Wright) on securing this Adjournment debate and on comprehensively explaining the challenges that we face. My job, partially, is to express empathy for children with disabilities and their families when the system lets them down; but a bigger part of my job is to begin to sort out some of those problems with colleagues across government, so that people’s daily experiences of the system change as rapidly as we can make that happen.
The mother of a young man with autism came to see me recently in my constituency. She said two things to me, as she explained the frustration with the system that she had experienced over a number of years. The first thing that she said, very passionately, as she looked me in the eye, was, “I am the expert on my son”—a clear message to professionals as much as to politicians. The other thing that she said was, “Why do I have to shout before anybody listens?” Those are common feelings and experiences among parents of disabled children in our society. That cannot be acceptable to any political party or to anybody committed to building the kind of society that has at its root the notion of social justice, and the belief that every disabled child matters and has the right genuinely to fulfil their potential.
In recent times hon. Members have—for the first time, and in my view it has been long overdue—taken significant responsibility for raising the profile and status of the issue, and brought the voices of disabled children and their families to the House. Like my hon. Friend, I pay tribute to my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) and my hon. Friends the Members for Blackpool, North and Fleetwood (Mrs. Humble) and for Normanton (Ed Balls) for ensuring that the issue is much higher up the political and public policy agenda than ever before. The level of engagement on the issue by political parties in all parts of the House also demonstrates how important it is to parliamentarians as well as to the Government.
I join my hon. Friend the Member for Cannock Chase in paying tribute to the work of BDF Newlife and, in particular, to the passionate and effective leadership of Sheila Brown. BDF Newlife has brought to our attention, in a stark and transparent way, some of the difficulties in the system that have to be tackled and resolved. We have heard about the extreme variability in spend in the health economy and social care services in different parts of the country. However, because of the lack of the transparency, using clear figures as comparators could be misleading. With the complexity of budgets, one of the problems is that it is sometimes quite difficult to unpick what level of resources is actually being spent on the service.
My hon. Friend identified a number of other issues. He talked about inadequate resources, insufficient prioritisation and a lack of clarity about responsibility and accountability. I shall return to those issues towards the end of my contribution.
Unless I am being paranoid, my right hon. Friend the Member for Oxford, East (Mr. Smith) seems to be following me round Adjournment debates, although I am sure—or at least I hope—that he follows other Ministers round Adjournment debates, too. His contributions are always constructive and, for obvious reasons, incredibly well informed. He talked about the two centres of excellence in Oldham and Oxford. He referred to their flexibility and teamwork, and their recognition that the needs of disabled children and their families are constantly changing as people grow up. One of the challenges for the system—but also one of the great successes of a modern society—is the demographic reality, which is that disabled children now have full and long lives. That is something that we all ought to celebrate; but equally, we should ask new questions of the system, which, as the hon. Member for South-West Surrey (Mr. Hunt) said, was not built for that demographic reality.
My right hon. Friend talked about the importance of joint working across agencies, as did other hon. Members. From the perspective of the parent—or indeed the adult with disabilities, if we were talking about them—the nature of the organisation or professional providing the service does not matter much. People requiring the services want easy access, support and a single door through which they can walk and know that they will end up in the right place with support. “One-stop shop” is the fashionable term; I prefer “first-stop shop”. If hon. Members reflect, they will find it difficult to believe that we could create a one-stop shop for the myriad of services involved. However, a first-stop shop—one door through which people could walk with a guarantee of being taken to the right place and being supported in getting there—is incredibly important.
My right hon. Friend talked about technological advances. Every day, such advances provide us with new opportunities to improve the life chances and quality of life of children with disabilities. If we are able to harness those technological advances to their full effect, those children will be able to experience those improvements. My right hon. Friend also referred to the difficulties of children at residential schools whose funders are in another locality. As we seek to fix the system, we need to consider the reality for those children.
Like the hon. Member for Sutton and Cheam (Mr. Burstow), my right hon. Friend referred to communication aids; I reassure hon. Members that the review includes them. The ability to communicate to maximum effect is fundamental. If children with disabilities are to achieve their full potential—whether through education, social interaction, or, as the hon. Gentleman said, fun and having positive relationships with peers—communication is surely not a luxury or add-on, but absolutely integral to disabled children’s life chances and quality of life.
Communication aids feature in the review and I am in discussions with the Department for Education and Skills. As was always the understanding, the ring-fenced funding came to an end; it was always to have been made available to build capacity in the system, after which local commissioners were to take on responsibility. Clearly, that has not always happened, so with the Department for Education and Skills, we need to reflect on how we make sure that communication aids are a key priority as part of an integrated approach.
My hon. Friend the Member for Milton Keynes, South-West (Dr. Starkey) made a powerful speech and brought to life what the obstacles and barriers mean for families with disabled children. They are tiring and mean that such families are not easily able to support their child as every parent would want to if given the opportunity. She also said that although within the system there is an opportunity to argue for more resources for disabled children and their families, as hon. Members should, existing resources are not being used to best effect. There is no doubt of that in my mind, and I shall turn to that issue in a moment.
My hon. Friend also talked about the centrality of achieving a genuinely holistic view, whether about social and health care or the relationship between statutory agencies and the voluntary sector. We should harness all the resources and expertise in local communities to ensure that we create a child-centred and streamlined system that is simple to access.
The hon. Member for Sutton and Cheam also referred to the importance of the statutory voluntary agency partnership. When debating the compact principles, we must close the rhetorical reality gap on the relationship between statutory agencies and the third sector across a range of services, including those for disabled children, and on our expectation about how such bodies need to work together to secure holistically the health and well-being of their local communities.
The hon. Gentleman referred to mindset in the context of maximum normality for a disabled child growing up. I entirely agree, and say to the hon. Member for South-West Surrey that my only reservation about some of his party’s rhetoric on such issues is about its presentation of special schools as being the panacea in all circumstances. Some parents want special provision and special education, and their voices must be heard. However, many parents want integration for their children, and we need to get the balance right.
The hon. Member for Sutton and Cheam also talked about a dearth of data on the issue. He is absolutely right that we need to do something about that. He also mentioned transition, which is one of my great areas of focus. Parents tell us time and again that the transition from child or young person to young adult involves a cliff edge; the move from children’s to adults’ services is difficult, and planning has to be at the centre of changing that.
The hon. Member for South-West Surrey rightly praised the work of Whizz-Kidz and Barnardo’s. I share in that support; they are actively helping us with our reviews. He rightly drew attention to the consequences of changing demographics and rising expectations and made the link between the needs of disabled children and our ambition to eradicate child poverty. He is right; there is a direct correlation between the two. On the issue of streamlining questions in applications and assessments for benefits, I say gently to him that that is one of the reasons why his party should be a little more progressive on electronic records and sharing information, which are two of the ways to streamline assessment and reduce the number of questions that people are asked.
As we speak, the Government are identifying the issues, then the solutions, then—most important of all—making sure that we see real and tangible changes on the ground in the near future and not at some distant point. The Treasury is leading the review of support for disabled children and their families as part of the comprehensive spending review. That is a major advance towards elevating the needs of disabled children and their families to being one of the great public policy imperatives for the Government. That review will address many of the issues raised in the Chamber today.
An independent review of palliative care services for children has been reporting to me and will be published in the near future. The review of community equipment has been concluded and the implementation stage is under way. It will lead to a new model of providing community equipment in every community. That will take effect from the beginning of the financial year 2008. There has been preparatory work on that new model, which includes streamlined assessment, an enhanced role for the voluntary sector, shifting resources from the entirely inefficient and very costly-to-run equipment stores and logistical operations towards the direct provision of equipment to disabled children and their families.
The third sector should have a much greater involvement and partnership role alongside local authorities and primary care trusts in every community. There is the concept of a key or lead professional to consider the holistic needs of disabled children and their families. Local government and the voluntary and private sectors have worked with that model in building the market, and it will transform how families in this country experience access to community equipment services.
Ultimately, we shall be judged on families’ everyday experience of whether the system improves. I believe that we are finally on track to make a real difference, but I expect hon. Members on both sides of the House to hold us to account as we continue to listen to the experiences and voices of the families of disabled children.