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Mr. Clarke: I agree entirely. If I may say so and still remain in order, Mr. Cummings, in the all-party spirit in which we approached the review, I want to acknowledge the all-party support that I received when I was promoting the International Development (Reporting and Transparency) Act 2006, including support from the First Minister, who was one of the sponsors. Can we honestly say that we want more transparency in terms of developing countries and the money allocated to them, but that we will not offer transparency for the £34 million allocated for the purposes that we are debating?
There may be satisfactory alternatives in this context to ring-fenced budgets, although I have not encountered them. The compelling argument for ring-fencing in this field of policy is that although parents of children with disabilities are, thankfully, gradually becoming more demanding, vociferous and articulate, the reality remains that, in political terms, they are often not that powerful; therefore, we need a discipline that will hold in check the ambitions and the sometimes misguided priorities that would otherwise obtain in local authorities of whichever stripe.
Mr. Clarke: Yet again the hon. Gentleman puts it perfectly. When I supported devolution, I took the view that all democratically elected institutions should be accountable not just to the powerful, but also to those who experience poverty. His argument is correct.
In summary, the priorities we set in our original review, which were applicable to the whole of the United Kingdom, were as follows: early intervention, with swift diagnosis and recognition of the childs needs; family support, such as vital short breaks; transition care, which is the period when a disabled person leaves the education system and often enters a confusing world; and additional funding to promote parent participation in improving services.
two thirds of families with disabled children struggle to pay their fuel bills each winter. One family of every 10 families with disabled children has had its gas and electricity supply cut off.[Official Report, Westminster Hall, 8 January 2008; Vol. 470, c. 11WH.]
One of our reports recommendations, which was not taken up by the Aiming high for disabled children: better support for families review, was to extend the winter fuel payment to families with disabled children. That payment would help them immensely, especially with the recently announced increases in fuel prices.
Another concern addressed by the report was the worrying lack of data. When allocating funding, one must know the extent of a problem to act appropriately. I know that the Aiming high review referred to data collection, so I invite my hon. Friend the Minister to comment on where we are now in that respect. Although we are talking about statisticswhere it is important that we have the correct informationall the discussion, and all the reports that have been written, fundamentally deal with people. In common with other Members, I realise that we are dealing with people with very specific needs.
Like other Members, I regularly visit people in my constituency, as I did last weekend. I am watching the clock carefully because I know that others want to speak, but I want to share with Members some of the discussions that I had with two admirable families. Although they acknowledged that they were receiving excellent support from the local social work department, they indicated that there were problems, reflected in the problems that we identified in our report and that appeared in the Governments response.
The first family I visited was the Davidson family. Leonie Davidson, a charming young woman, is 17. She has been diagnosed with Hallervorden-Spatz disease, which is a genetic, degenerative condition. Her mum, Angela, is an admirable woman and a lone parent. Leonie has a brother, Barney, who is nine. Angela takes the view that direct payments are most suited to her familys needs. In fact, she said that they were fabulous and were good for her family. She felt, and I think that she was right, that she was entitled to continue working as a management accountant, and that with proper support and resources there was no reason why she could not exercise the right choices for her family. I think we would all endorse that.
When local authorities have the resources to agree to direct payments, it means that there is access to benefits from the independent living fund, which is very important to Angela and her family. Although she had to spend £3,000 topping up her grant, what was important to her was the right to choose and the right to recognise her daughter, Leonie, as a person in her own right.
I also want to talk about the family of 16-year-old Stephen Campbell. Stephen has been diagnosed with tuberous sclerosis. A stroke at 12 worsened his condition. His parents are Catherine and Alex, and he has an 11-year-old brother, David. Catherine has experienced epilepsy for most of her life. Although the family acknowledge the work and contribution of North Lanarkshire social work department, there is a problem. Having gone through the education system, Stephen is in need of some form of transitional arrangement and although there is an excellent centre for respite careFerrie houseStephen is unfortunately not able to go there because the local authority, which I am not criticising, has decided that the resources will not be available until he reaches the age of 18. Other young people go to the centre, which is only two miles from where Stephen lives, but he has to travel 12 miles a day.
There is an impact on Stephens respite care, too. His parents have seven days respite care a year from the centre that he currently attends; Ferrie house would provide 14 days. Such things are very important to people who are trying to cope in the circumstances that I have described.
I do not want to dwell on those cases too much because I am watching the clock, but I am delighted at the response from right hon. and hon. Members because I am describing what people have to cope with day in, day out. I want to thank both families for the help that they gave me. In the argument about resources, they acknowledged that much has been done by the Government, by the devolved Government and local government, but there is no doubt that additional resources would be of assistance to them.
Bob Spink: Before the right hon. Gentleman finishes, will he allow me to ride one of my little hobby horses? He is right to highlight the existence of a whole spectrum of need, and the fact that parents and carers probably know best how to meet it. Does he share the view that some children are best served by mainstream schools and some are well cared for in the wonderful special learning difficulties schools? However, some children are well cared for in moderate learning difficulties schools, which seem to be under threat of closure in certain local authorities. Does the right hon. Gentleman believe that we should maintain those wonderful, caring schools, so that parents can have a choice if their children fit into that particular category?
My hon. Friend the Member for Blackpool, North and Fleetwood, who has been immensely helpful in the debate, reminds me that time is going on. I am grateful for her forbearance and that of all right hon. and hon. Members. Although there is much more that I would like to say, I will conclude with just a couple of points.
In both reviews we have presented the picture, as we see it, of the problems for disabled children and their families throughout Britain. We listened to the evidence and to what people had to say. We genuinely tried to respond to profoundly important matters such as early intervention, transition and families involvement in decision making. Therefore, we believe that it is right that monitoring should take place.
The argument about funding will go on. My hon. Friend the Minister will understand that people will still come back and rightly ask for more, but he is entitled to ensure that money is spent in the right area. If this debate helps us to achieve that purpose, it will have been worth while.
Mr. Mark Harper (Forest of Dean) (Con): It is a great pleasure to serve under your chairmanship, Mr. Cummings. First, I pay tribute to the right hon. Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) for securing this debate. As he mentioned in his remarks, he and the hon. Member for Blackpool, North and Fleetwood (Mrs. Humble) have chaired a series of parliamentary hearings for the Secretary of State when he was at the Treasury. Those hearings and the efforts of the Every Disabled Child Matters campaign and of my hon. Friend the Member for South-West Devon (Mr. Streeter), whose private Members Bill helped to raise this issue to prominence, secured the funding that the hon. Gentleman mentioned in his remarks. My hon. Friend the Member for Buckingham (John Bercow) is chairing another review for the Government. If the Government want to be even-handed about it, I hope that my hon. Friends review is successful in securing an equivalent amount of funding for the area of policy that he is examining. We will know the results of that in due course.
Given the significant contribution from Scottish Members and the issues that they raised, it is worth mentioning that this issue and, indeed, health policy have been devolved to the Scottish Parliament. The
issues that they raised are perfectly reasonable, but frankly, they are issues to be debated in the Scottish Parliament, because they are devolveda policy that the Labour party supported and implementedand this Parliament has no control over them. The right hon. Gentleman is right to say that extra funding has been allocated under the Barnett formula, but it is up to Members of the Scottish Parliament, who are accountable to their constituents on these issues, to have the debate. The right hon. Gentleman and his hon. Friends have no say over these policy areas in Scotland as a result of the devolution settlement implemented by the Government whom they support.
Opposition Members welcome the Governments funding for short breaks, which resulted from the inquiry that the right hon. Gentleman held and the other campaigning work that took place. Just this weekI think that he drew attention to this in his speechthe Government reannounced the funding, together with the breakdown by local authorities, spread over the next three years. I was pleased to note that my local authority, Gloucestershire, is one of the pathfinder authorities and has been allocated the money slightly earlier in the process. We will receive a more significant share of funding in the early part of those three years as some significant plans are rolled out.
I have spoken to one of my colleagues, Councillor Jackie Hall, the cabinet member for childrens services on the county council, who confirmed to me that she and her colleagues are working closely with parents to develop provision that will suit their needs, rather than considering what would suit the local authority. I am very pleased that they have taken that approach. It is very much in the spirit of the inquiry chaired by the right hon. Gentleman. They are considering what parents need to support their families. One matter that Gloucestershire is examining is the extent to which its plans can include an element of choice, so that families can choose, from a range of options, the support and short breaks that best suit their family structure.
It would be helpful if the Minister could comment on the following issue. The right hon. Gentleman will know that the settlement announced in the comprehensive spending review is for the three-year period. I have concerns about this. The funding going to Gloucestershire rolls forward in 2009-10 and 2010-11 at just under £1.6 million a year. The concern that families will have is that if the county council puts together a package of short breaks that they find incredibly valuable and that helps to keep families together and support them, what will happen after the three-year period?
Most local authoritiesthis came out from the comments about Scotlandare cash-strapped. My local authority, particularly due to the severe flooding that we had last year and, sadly, the flooding that we may be experiencing this week, is very cash-strapped. It had to deal with a big expense last year as a result of flooding. We do not want the funding from the Government to cease after the three years and local authorities throughout the country simply to be unable to continue funding the package. There would be no crueller measure than to have rolled out the package of short breaks for families, have those families come to depend on those breaks and get used to them, and then snatch them away simply because there is no funding.
Therefore, it would be helpful if the Minister could say what the Governments thoughts are about rolling the funding into a more permanent settlement for local authorities, so that they can have confidence.
Pathfinder authorities are receiving the money fairly early on, but the situation is different for many other authorities. If we look at the totalsobviously, these are figures for Englandwe see that the funding is very weighted towards the back end of the process, with £15 million in the 2008-09 financial year, £76 million the following year and £178 million in the final year of the process. Therefore, a number of local authorities will only just have rolled out their programmes and there will be no confidence that they will continue. It is important to give some guidance about what the Government thought would happen subsequently.
Given that the bulk of the money is rolled out throughout the country in years 2 and 3, it would be helpful to know what process the Department will follow in using the experience of the pathfinder authorities to roll out best practice to other authorities. In relation to the money being spent in the first year, we can see what works. Clearly, it would not be appropriate centrally to direct local authorities on how to spend the money, but it would be helpful to ensure that authorities receiving the bulk of their funding in years 2 and 3 have good access to the lessons of what has worked in the pathfinder authorities. Surely that is one purpose of a pathfinder programme: to spend the money better in the subsequent years of the programme.
The final point on the funding that the Government have agreed is that the Under-Secretary of State for Health, the hon. Member for Bury, South (Mr. Lewis), who is responsible for care services, committed that the money that would come from the Department of Health would match what was coming from this Ministers Department. I did not find the statement terribly transparent. The Health Minister said:
Substantial new growth funding has been included in PCT allocations...to enable them to work with local authorities to...increase the range and number of short breaks.
This Minister will know that all PCTs in England were this year given a 5 per cent. increase in their funding. I have not been able to disentangle how much extra funding was given to PCTs to account for that pledge to match the funding for short breaks. Given that all PCTs were given a flat increase, it would be interesting to know whether the money for short breaks in the health funding has been equally distributed throughout the country, or whether it matches the money that has gone to local authorities.
Can we assume in Gloucestershire that the extra money that Gloucestershire PCT will have received in its funding settlement will match the £500,000, £1.5 million and £1.5 million that the county council receives in those three years? I know that those who run Gloucestershire PCT would find it very helpful to know what extra amount of money it has been given to fund those essential services.
I will try to keep my remarks brief so that the hon. Member for Blackpool, North and Fleetwood has an opportunity to speak before those on the Front Benches, but I want to say a few words about autism. The ten-minute Bill of my hon. Friend the Member for
Ilford, North (Mr. Scott) will be presented today after Prime Ministers questions. That would make provision for the education and training of children with autism and Aspergers syndrome, and for a number of connected measures. I am very pleased that my hon. Friend will have the opportunity to present the Bill to the House.
I was fortunate just yesterday to visit TreeHouseboth the trust and the schoolin north London. They are experts at dealing with autism. Indeed, I am very pleased with their slogan Ambitious about Autism, which is about ensuring that children who are on the autistic spectrum are successful. That school was founded by parents of children with autism, who found that provision was lacking, and it has been very successful. It has an evidence-based process. It uses applied behaviour analysis and was the first school in the UK to use such analysis to teach children with autism. It has a very good evidence base of success.
Yesterday, I had the opportunity to meet not only the staff of both trust and school but a number of parents and to listen to them talk about their experience. I mention that because there is very good evidence on the issue from the Foundation for People with Learning Disabilities, funded by the Shirley Foundation. The evidence was gathered in the late 1990s and has recently been updated. It relates to the costs associated with health and social care support for people on the autistic spectrum. Apart from the significant number of people on the spectrum433,000 adults and 107,000 children; obviously, children are the focus of this debatethe estimate made by the organisation is that the lifetime cost for someone with an autistic spectrum disorder and a learning disability is £4.7 million. It is £2.9 million for someone with a high-functioning autistic spectrum disorder. For children, if they are living in residential care or are in a foster placement, the annual costs can range from £16,000 to £62,000. The costs are considerably lower if they live at home.
I mention that because there is good evidence, particularly with autism, that early interventions are extremely valuable. Given the lifetime cost, the tragedy that I discovered when listening to two of the parents yesterday was, first, the delay that they experienced in getting a diagnosis and, secondly, the battle that they had with the local authority to get appropriate funding. Often, parents must go all the way through to a tribunal, which means that the child will not get the appropriate support in the critical early years unless the parents themselves can provide it. Obviously, that option is available only to those parents who have the appropriate resources. By not investing early, society must bare the significant costs through the lifetime of the child. Will the Minister say what work the Government are doing on lifetime costs and the extent to which early interventions make sense not only from a financial perspective, but from a human and family perspective, even if they are quite expensive?
I shall make only one more brief point on direct payments having seen your signal, Mr. Cummings, to keep an eye on the clock. The right hon. Gentleman mentioned direct payments. Many disabled people and their families welcomed the payments because they put control in their hands. The payments mean that people do not have to go to a local authority to receive
services; rather, the people themselves control the services and can fit them around their individual experience. Will the Minister comment on the extent to which direct payments are being taken up? In a written answer on 7 January, the Minister for Schools and Learners said:
The most recent data available are for 31 March 2006, and show that 649 children and 4,170 carers were receiving these payments.[Official Report, 7 January 2008; Vol. 470, c. 205W.]
Given the scale of the number of people whom we know are receiving social care, those are small numbers. It would be helpful to know what the Government are planning to do to make direct payments more easily accessible, not only for the parents and carers of disabled children but, in due course, to those disabled young people themselves, to give them power and control over their own lives.
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