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23 Jan 2007 : Column 1373

The report notes that there was a 10.1 per cent. increase in funding for family support services between 2003-04 and 2004-05, and a 7.1 per cent. increase in children’s social work, although it does not say how much of the increase for children’s services is for services for children with disability.

Dr. McCrea: Does the hon. Lady know what happens in Northern Ireland when a young person with profound learning disabilities—and, quite often, physical disabilities as well—reaches the age of 19? If they are not going into employment, their education completely stops. They have a body of 19, but a mind of perhaps a five or seven-year-old. What other child does not receive education—or have the right to receive it—at the age of five or seven? Is that equal opportunities?

Mrs. Humble: I freely admit that I am no expert on the education system in Northern Ireland, but I will come on later in my contribution to talk about the problems associated with the transition from children’s to adult services, as important issues also arise in the rest of the UK.

Dr. McCrea: It is not a matter of adult services. The person I am talking about has a mind of a five or seven-year-old. They may be 19 years old, so an adult age will be recorded on their birth certificate, but in reality it is children’s services that they need.

Mrs. Humble: The hon. Gentleman is absolutely right. When I talk about the transition from children’s to adult services, I do so because our services have age limits applied to them—and they can be arbitrary, particularly when we are talking about people with disabilities. As the hon. Gentleman so rightly says, some 19-year-olds with disabilities are, to all intents and purposes, children, while others of the same age may have high intellectual abilities. They may have a physical disability, but be more than capable of dealing with the world of work or the world of further or higher education. One of the key messages that should come out of our debate is that we must take account of individuals. Everyone is an individual; we are all individuals. A young person with a disability is most certainly an individual and should be listened to on that basis.

For that reason I welcome the Government’s £13 million investment in the early support programme pilot, which has produced some very good work. A further £27 million has been invested in children’s hospices. Brian House children’s hospice is in my constituency, so I know that it does excellent work. I thank the Minister for what she has provided, but I would add a brief postscript of “more please”. That investment has also been matched by a huge increase in expenditure on education.

Key questions nevertheless must be asked. Is there enough money in the system? Is it being spent in the right way and is it going to the right people? Are the Government’s excellent policies being implemented and are they changing people’s lives? When I hear Ministers tell us how much money has gone into the system, I accept it, but I hear from my own constituents—and
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some Members heard from the parents at the parliamentary hearings—that they often do not see much evidence of it. We therefore need to look more closely into where the money has gone and why some families clearly have difficulty accessing the services that they need. The hearings clearly showed that a family with a disabled child is more likely to be poor, more likely to face barriers to work and barriers to the enjoyment of the many everyday things that we take for granted—holidays, visits to the cinema, visits to the park and so forth. What those people wanted more than anything was to live ordinary lives, to be socially included, to have equity in services and support.

Poverty and the additional costs of disability put enormous pressure on families. A Contact a Family survey of 2004 showed that only 6 per cent. of disabled families reported being “comfortably off”, with 92.8 per cent. reporting some form of financial difficulty. The support that families need to improve the life chances of disabled children is not just about appropriate care, education or housing; it is about improving the family income, jobs and the child care provided by well trained individuals who understand the needs of their disabled children. It is a hugely complex issue.

We considered all those issues in our report. We produced a list of recommendations that my hon. Friend the Minister has looked at, and she will have seen that No. 1 is the need for significant additional funding, but that funding must be targeted at disabled children and their families. I very much hope that more money will come from the comprehensive spending review, but it should be given in an open and transparent way, as an investment in services, with clear obligations on service deliverers to show where the money has gone.

The hon. Members who put together the report hope that a care offer will be developed to create a universal entitlement to a minimum service. We also recommend that the key worker schemes should be extended beyond the excellent early support programme. Families with children with disability need those key workers, and if their children have complex needs, they need them all the way through to the transition to adult services.

One very important issue for many of those families is the provision of short-break services. According to the Treasury review, 3,000 children are on waiting lists for family-based short breaks. CSCI’s figures for 2005 show that only one in 13 disabled children receives regular support services, including short breaks and direct payments.

Annette Brooke: Does the hon. Lady agree that the provision of short respite breaks very much represents investing to save if it holds the family together, avoids a child being placed in residential care and perhaps keeps the parents’ relationship together? Surely, that is such a saving overall to society that that money is well spent.

Mrs. Humble: I absolutely agree with the hon. Lady. Short breaks are useful to the child; they are useful to the parents—they are often a relationship’s lifesaver, as she mentions—but they are also important to other children in the family. We sometimes forget in debates on families with children with disability that they often have non-disabled children as well, and those siblings
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are all too often forgotten because their parents understandably concentrate on the child with disability, yet the other children also need some of their parents’ love, affection and time, and short breaks and respite care give them that, so they are essential for everyone concerned.

In an intervention on the Minister, I mentioned advocacy services, and I declare an interest as the president of Blackpool Advocacy. I see how important advocacy services are, because families with children with disabilities do not always have the voice to speak for themselves—they do not understand some of the issues—and they need someone else to express that voice for them. There are also instances when children, especially as they become adolescents, want to be heard. Sometimes, they want something different from what the rest of family wants. Again, their voice needs to be heard, and advocacy services should be a key part of the development of future services for children with disability.

I agree with the hon. Member for South-West Surrey that benefits need to be simplified. It is not just that benefits for families with children with disabilities are complex, but sometimes the families do not understand what the benefits are supposed to deliver. There is a huge amount of misunderstanding about what disability living allowance is given for.

Again, I declare an interest: Warbreck House in Blackpool is the headquarters of the disability living allowance unit, and I speak to the staff who deliver the service and do the assessments. Sometimes they get people claiming although they do not have an entitlement because they think that the benefit is paid as compensation for disability. It is not; it is paid for the social care needs that arise from the disability, and much more publicity is needed about what is available to families.

Why do families who have children with long-term conditions that are not going to vary over the years have to keep reapplying? Surely disability living allowance could be given to some of those families for a longer period. I applaud the Minister for the references to the subject in the 2006 annual report of the Department for Work and Pensions, “Opportunity for all”. In that report, the Secretary of State emphasises the need to “improve support for families”,

and “promote equality of opportunity”. This is yet another report that details the needs and says what should be done. The question is whether those things are being done. Are families with children with disabilities being helped to go through the complex benefits system in the way that they should be helped?

Finally on the recommendations from our report, I want to say a few words about the transition to adulthood. Parents who have children with disabilities, unlike most other parents, find that they are under more pressure, not less, when their child reaches adulthood. Even parents who have managed to obtain work when their children are at school, and who have managed to obtain good quality child care, often find that, when the child is 18 or 19 years old and is looking for support through adult provision, that support is not there or is not there full-time. Those parents often have to give up work to
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look after their adult child, at a time when many other parents are waving goodbye to their adult child, who is going off to further or higher education, or to work, and who is setting up in their own establishment. We have to look carefully at what support services are available to young people of 16, 17 or 18 who still need support. At the same time, we have to recognise that, as some young people with disabilities move into adulthood, they are very capable of living on their own—perhaps with some support—and going into the world of work. It is a case of looking at the needs of the individual and assessing those needs within the family, and doing everything that we can to support them.

On top of that, there are many basic day-to-day problems. For example, the organisation Whizz-Kidz highlights the shortage of mobility equipment and the need for effective wheelchairs that do not just meet clinical needs. All too often when a child goes to hospital and there is talk of getting a wheelchair, people look only at clinical need. But that child will also want independence. They will want a wheelchair that can take them out and about, and that will enable them to go out with their friends. We need to look at effective mobility equipment and communication aids. I keep emphasising the importance of listening to the child, but some children need communication aids to express their opinion. Language barriers for children from ethnic minority communities need to be addressed.

The policy review document from the Treasury and the Department for Education and Skills goes into great detail in all those areas, just as our own parliamentary hearings did, and finds examples of good practice, but also a lack of consistency and uniformity. We must build on the good practice that is identified, offer a universal service starting with effective early intervention, use key workers to advise families, and ensure that there is a coherent multi-agency approach all the way to adulthood, delivered by well-trained staff. The Treasury review ends its section on better outcomes for disabled children by saying:

We know what needs to be done. That review highlights a lot of what needs to be done.

Mr. Tom Clarke: I apologise to my hon. Friend for intervening, particularly as she is making an excellent speech and has almost concluded it. Her input into the review was first class and comprehensive, but does she agree that this is perhaps not the right debate in which to have a full discussion on the report, “Policy review of children and young people: A discussion paper”, and will she join me in calling for a debate on it in Government time? The paper is so important that I am sure that the House would welcome that opportunity.

Mrs. Humble: I certainly endorse my right hon. Friend’s call for a debate in Government time. The Treasury-DFES review is an important document, because it will feed into the comprehensive spending review. Those of us who argue for more provision need to debate it in detail and to urge Treasury Ministers to accept that we must invest in services, and the document is a key part of that.

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I want the recommendations that we made to the Government in our report and the failures outlined in the Treasury review to be addressed sooner rather than later. In a joint meeting of four or five groups, including the all-party groups on children, on child care and on learning disability, I told Lord Adonis that we need a short-term, a medium-term and a long-term strategy, and I say the same to the Under-Secretary. Then we could move in the right direction, and show parents that we were doing so, having recognised all the information that they gave the Government about their needs.

Finally, lest anyone should think that I see disabled children as a problem, let me point out that they are not; they bring joy as well as pressures to their families. In the foreword to the report on parliamentary hearings, my right hon. Friend the Member for Coatbridge, Chryston and Bellshill and I said:

That is the task before us, and it is one on which we must deliver.

9.7 pm

John Bercow (Buckingham) (Con): I begin by declaring an interest as the father of a child who has significant, and probably long-term, special educational needs. It is a privilege to follow the hon. Member for Blackpool, North and Fleetwood (Mrs. Humble), because she speaks with integrity and authority on the issues that we are discussing. I also pay warm tribute to my hon. Friend the Member for South-West Surrey (Mr. Hunt), who offered the House both a forensic dissection of some of the failings of the system and a philosophical framework that will inform the policy of the next Conservative Government, and I congratulate him on that.

As chair of the all-party group on speech and language difficulties, I would like narrowly to focus my remarks on the 1.2 million children whose disability is to suffer from a speech, language or communication impairment. Each and every right hon. and hon. Member in the Chamber is familiar with, and probably signed up to, the doctrine and mantra of ensuring that there is earlier intervention to address such impairments. We all know the consequences of effective early intervention, and the dangers of its absence. Let us take a child with initial speech, language and communication impairments. If early intervention takes place and is focused and effective, a child with relatively moderate difficulties will be able to read, spell and communicate by the age of five and a half. However, the consequence of the failure of that early intervention, which is an essential prerequisite for recovery and progress, is bleak indeed. Some of the consequences for a child who does not get the benefits of that early intervention are, of course, obvious. Later interventions, because time has been lost, will probably have to be more intensive, and will necessarily entail a greater cost. It is likely, as others have pointed out, that the problem will deteriorate and the condition will worsen so that instead of suffering from a significant but transient condition, the child unfortunately suffers from an impairment that is significant, persistent and even insuperable.

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I want to reflect on the consequences for children in such circumstances of the absence of early intervention. There are huge risks, both to the child and to the country. The risks to the child are well known, but they must be underlined so that they are at the forefront of ministerial and other minds in the discussion of public policy. There is a risk of emotional and psychological difficulties; of poor behaviour; of lower educational achievement; of a persistent handicap in communication; of deteriorating employment prospects; of serious challenges to the individual’s mental health; and, yes, there is a notable risk of descent into criminality, of which the individual denied services and the country as a whole are the hapless victims.

I said that there was a problem not just for the individual but for a society as a whole, and it can be viewed in economic terms. I calculate that the lifetime cost of denying effective assistance to the present primary school cohort with language and communication impairments is £26 billion. Without early intervention to address their disability and offer them hope and the prospect of progress, they suffer an economic loss in earnings potential and societal contribution which I CAN calculates to be worth £97,000 per person. In Milton Keynes, Buckinghamshire and Oxfordshire, 2,063 people fall into the so-called NIET category—not in education, employment or training—and 1,000 are in that position as a consequence of speech, language and communication impairments that have not been addressed, which is a very serious state of affairs indeed.

We must reflect on the public policy required to address the problem. I do not want large numbers of people to be consigned to unemployment, disability and continuing dependence, or to be deprived of opportunities and denied a chance to contribute effectively to the society of which they are part. They want to assert themselves, to achieve, to be independent, and to prove how much they have to offer, both for their own self-fulfilment and for the benefit of society as a whole.

I wish to identify, in as non-partisan a way as I can—and I think that the record shows that I generally do so—a number of issues that must be dealt with if we are to address the disabilities of those children and of others. First, may I tell Ministers that there is a fundamental weakness and conflict of interest at the heart of the special educational needs system? The local education authority, as my hon. Friend the Member for South-West Surrey said, has long been in a position of virtual omnipotence, which is an unsatisfactory and indefensible state of affairs. To put it simply, the LEA assesses, decides, pays for and, more often than not, provides the services to meet the assessed needs of the individual disabled child. That seems to me to be fundamentally wrong. It logically follows, as parents—including myself, know from our personal testimony and experience—that when we are seeking a statutory assessment, when we are successful in obtaining a statement of special educational needs, when we are arguing about the precise contents of that statement, or when we are fighting our corner to secure its effective implementation, we are up against an authority that has been in the driving seat throughout the process.

That is wrong, and it is not only my view—it is the view of an authoritative body, after considered reflection and detailed study of the available evidence. I refer, of course, to the Education and Skills Committee, so ably
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and independent-mindedly chaired by the hon. Member for Huddersfield (Mr. Sheerman). Its report was clear that that system needed to change. My own view—and I will not rehearse the detail or the intricacies of the system tonight—is that we need to move towards a system for the delivery of special educational needs, including the determination of eligibility for statements, which is independent of Government, of local education authorities, of the source of funding and of the means of supply. Unless and until we get to that point, there is a lacuna in the system, which I readily concede has applied under successive Governments. The fact that we as a country got it wrong in the past should not in any way cause us to shy away from the issue or abdicate our responsibility.

Mr. Tom Clarke: The hon. Gentleman is making an inspiring and extremely well informed speech. May I reassure him that when our review considered these matters, including the recommendation of the Select Committee, we unanimously endorsed that recommendation? I hope that he will find some comfort in that view.

John Bercow: I am extremely grateful to the right hon. Gentleman. That is consistent with the non-partisan spirit that ought, as far as is possible, to inform these debates, and has certainly characterised the discussions that I have had with the right hon. Gentleman over a period of nearly a decade. It was an incisive intervention which happened to help my cause, and I am grateful to him.

We talk, as I said, about early intervention. In very broad terms admitting of some oversimplification, one can categorise the debate in terms of deciding what is needed and then ensuring that it is available. On the subject of determination, I believe that we suffer continually in this country from a problem of late assessment, late identification and late diagnosis. I recognise, as the Under-Secretary of State for Work and Pensions, the hon. Member for Stirling (Mrs. McGuire) would argue if I did not, that in the case of a child there is a process involved, that development can proceed at different rates, and that it is legitimate to allow for periods in which changes in behaviour or performance can be achieved. However, I believe that sometimes those operating the system play precisely upon the hopes, as well as the more exaggerated fears, of some parents by saying, “Don’t worry. There’s plenty of time.” Of course, those who are articulating that message very often have a reason of financial self-interest for holding back the provision of what is needed. I say to the hon. Lady that there is a problem in that regard.

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