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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 childs 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 2,300mainly students with dyslexiawere 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 coststhat 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.
radical review of community equipment and wheelchair services.[Official Report, 12 March 2007; Vol. 458, c. 122W.]
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.
Dr. Phyllis Starkey (Milton Keynes, South-West) (Lab): 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 peopleparents of disabled childrenin my constituency.
I am grateful for BDF Newlifes 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 sons 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 madethey were not thinking of reconsidering their choices, because they thought that
they were the right ones for their familythey 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 recentlyjust 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.
Mr. Paul Burstow (Sutton and Cheam) (LD): 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 Foundations work.
It has been a useful debate. The hon. Gentleman referred to last years 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 childrens 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 Treasurys 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 BDFs 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 familys 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 childrens development.
On planning, I was struck by the dearth of datathe BDFs work underlines thaton 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 childrens 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 needsclinical, educational, developmental and socialthat 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 assessmentnot just the first assessment, but a regular programme of reassessment. Otherwise, equipment ceases to be fit for purpose and childrens 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 childrens 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 persons 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.
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