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2 May 2007 : Column 464WH—continued
10.33 am
Mr. Jeremy Hunt (South-West Surrey) (Con): 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.
10.43 am
The Parliamentary Under-Secretary of State for Health (Mr. Ivan Lewis):
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.
Gershon Review (Great Yarmouth)
10.59 am
Mr. Anthony Wright (Great Yarmouth) (Lab): It is a pleasure to serve under your chairmanship, Mrs. Dean. It must be unique for me to follow the other Tony Wright—my hon. Friend the Member for Cannock Chase (Dr. Wright)—but this one is slightly younger.
I am pleased to have secured this debate. I have been putting in for it for a long time, and the procedure of the House means that Members have to take pot luck. Clearly, the day after the strike in the public sector about the job cuts is a timely occasion. It was difficult to secure this debate because it covered different Departments, from the Inland Revenue to the Department for Work and Pensions and the criminal justice unit. It was difficult to find who could respond to my questions and the issues that I want to raise. I am pleased that my hon. Friend the Financial Secretary will respond to the debate on behalf of the Treasury.
I want to set the scene and to explain why the issue concerns me. Great Yarmouth is, unfortunately, a place with higher than average unemployment. In 1989, it reached 19.7 per cent. unemployment—one in five people. Since 1997, 10 years ago, the number of people unemployed has fallen from the heady heights of 4,850 down to 2,934—a massive drop of some 40 per cent. However, we have to move on and it is clearly not good enough that we are still in the top 50 unemployment blackspots in the UK. That makes uncomfortable reading when we consider the views of departments when they consider relocating civil service jobs from Great Yarmouth to an area that has relatively low unemployment. In Norwich and other areas, unemployment stands in the region of 3.5 per cent.
In December 2003, the Chancellor of the Exchequer made a statement on the pre-Budget report. In respect of the Lyons review, which we were considering at the time, he said that
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