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Mark Harper: Future Positive

"Good morning. I would like to thank the Children's Trust for inviting me to speak to you today in what is my first speech outside Parliament since I took over from Jeremy Hunt as Shadow Minister for Disabled People in July. I am sure that some of you have had dealings with Jeremy and I have heard nothing but praise for the work that he has done in this area. I consider myself very fortunate to have been given this brief by David Cameron.

I believe that I have two roles. First, as part of the Shadow Work and Pensions Team with direct responsibility for disability matters to hold the Government to account and develop our policy in this area. Second, there is a cross cutting role - ensuring that other departments are fulfilling their duty to support disabled people and ensuring that we take full account of the needs of disabled people in our own policy making.

I have had a long standing interest in special education since I first moved to the Forest of Dean. The previous administration running the County Council effectively had an 'inclusion at all costs' policy and were intent on closing special schools for children with moderate learning difficulties. This also led to changes to our local school for children with severe learning difficulties. I became involved in the campaign to try and save the special schools and worked alongside the dedicated parents, teachers, other staff and the young people themselves. In our case, we lost the battle before the County Council changed hands in 2005. However, a new special school was created, the Heart of the Forest Community Special School, which caters for children with severe, profound and multiple learning difficulties and complex needs. In its first Ofsted report, published in June, it was described as "outstanding in every area with an inspirational head teacher".

During the summer months I have had the opportunity to meet with many charities and organisations that work with, and for, disabled people and their families every day, providing advice, support and services. In particular, I have met with the Every Disabled Child Matters campaign, and look forward to speaking at their fringe event at Conference next week. I am grateful for the advice and support that they, and others, have given me.

In the two months in my new role, following my discussions with carers, charities and disabled people, some things have already become very clear. In the rest of my remarks, I will set out what my priorities will be over the coming months and what some of those things mean for the long term care needs of young people with Profound and Multiple Learning Disabilities.

The most obvious thing to restate is that disabled people, no matter what their impairment, whether physical or mental, have an equal right to services and support. As David Cameron has said, 'Every person - no matter their mental or physical condition - is of equal worth.'

Disability must not be a barrier to anyone's opportunity to be involved in any aspect of personal or social life. I do believe therefore, that the social model of disability - that social, and not medical or physical, barriers cause a disability - is the appropriate one to use when developing policy in this area. We must strive to breakdown these barriers.

In the end, we cannot change the nature of someone's disability. But this must never be an excuse for not providing the education or opportunities to which we are all entitled. It is our duty, as policy makers, educators and carers, to ensure that society does not put up barriers which prevent any disabled person fulfilling their own potential. And removing the barriers that currently exist must be our ultimate goal.

The 2005 report from the Prime Minister's Strategy Unit - Improving Life Chances for Disabled People - has an ambitious target: to enable, by 2025, all disabled people in Britain to have full opportunities and choices to improve their quality of life and be respected and included as equal members of society.

To achieve this goal, as my predecessor said, we have a mountain to climb. It can be climbed, but it will require steady and focussed progress.

There are a number of barriers that, at present, prevent us from achieving that goal.

First, we must break the link between disability and poverty.

According to the Joseph Rowntree Foundation, three out of every ten disabled adults of working age are living in poverty in Britain - a higher proportion than a decade ago and double the rate among non-disabled adults. Disabled adults are now more likely to live in poor households than either pensioners or children.

The Government's latest figures show that less than half of all disabled people of working age are in employment. Over 3 million disabled people are not employed . Employer attitudes and poor qualifications are barriers to employment. But they are unnecessary barriers and this must be addressed.

For those that do find jobs, many are on low pay. Disabled people are over represented on every measure of poverty. This needs to change, but will only do so if society changes its preconceptions and prejudices about disabled people.

This change will take time and effort. In the meantime we must continue to support disabled people, their families and carers through, among other things, the benefit system.

Second, as we all know, there are a multitude of benefits that disabled people can apply for: there is the disability living allowance, severe disablement allowance, housing benefit, independent living fund, incapacity benefit, community care grant and a number of others.

Every one of these benefits requires a form. And every form repeats some questions. If a disabled person wishes to apply for all ten benefits they could normally receive they would have to answer 1,351 questions across 412 pages. Of those 1,351 questions, less than one fifth of them are unique, 40% of the questions are repeated on at least three forms and 16% of the questions are repeated on half of the forms. The process is just as complex for parents with disabled children - they have to answer 1,194 questions over 319 pages.

Put simply, that means 7.2 billion questions are processed annually from disabled claimants, of which no fewer than nearly 6 billion are repeated at least once.

This complexity puts many people off claiming certain benefits to which they are entitled and need. Only half of disabled people claim DLA; only 45% claim Incapacity Benefit, only 25% claim Housing Benefit or Council Tax Benefit and only 22% claim income support.

People should only need to give details of their disability once. A simpler system would increase uptake and help the millions of disabled people who are needlessly living below the poverty line as well as cut administrative burdens.

Finally, we must, if we are to include all disabled people as equal members of society and offer them full opportunities and choices, give disabled people full control over their own lives. The 2005 report noted that disabled people and their carers are expected to bend to the services that are offered.

But disabled people are not a homogenous group.

Everyone is different, with their own personal priorities and requirements.

We can no longer expect people to fit around whatever standard services are offered to them. We must instead allow people the opportunity to choose the services they need and want - from social services or any other suitable and responsible provider.

The Life Chances report made clear that the government's goal is to offer direct payments to disabled people, their families and carers to allow them to take charge of their own lives - giving them the chance to commission the care and support they need and want. We support that aim. But so far it does not seem that much movement has been made in that direction. This is in part because of concern among service users and carers about managing the direct payments as well as resistance among social service staff to direct payments and difficulties regarding the supply of people to work as personal assistants. These are not insurmountable with the correct assistance.

There is a further reason to provide direct payments - of the £540 million spent on social care for disabled children, 26% - £140 million is spent on assessing and commissioning . Money that could be spent far more effectively by the people using the services themselves. Shortening those lengthy questionnaires would be a great place to start!

Disability Equality Duty

Direct payments are not the only way to develop local services. In 2005 the Government introduced the Disability Equality Duty (DED). This was, I believe, one of the most important steps that has been taken in recent years to improve public services for disabled people by involving disabled people directly in the development of the services they receive.

Less than a fortnight ago the Office for Public Sector Management and the Disability Rights Commission produced a report on the implementation of the DED. The conclusions could not be clearer: The DED has

"helped to create better public services… overall performance had improved as a consequence of involving disabled people. [Public Authorities] were making efficiency gains… [It] has resulted in an increased level of trust between those engaged in these processes and the organisations involved. Lastly…involving service users and communities… is a powerful way to co-create more effective public services and to build strong relationships between public organisations and the communities they serve."

This is a ringing endorsement of the Duty, which reflects the many conversations that I have had with charities and public bodies. The DED is a benefit to everyone.

In 2006 Anne McGuire, the Minister for Disabled People, said "the key proposal in the [DDA 2005] is the introduction of the disability equality duty."

It is odd therefore that it looks like the DED will be lost in the Single Equality Bill, due to come to the House in the next session of this Parliament.

Current proposals will remove the active duty to involve disabled people and charities in the running of services. There will simply be a duty to consider and prioritise the inequality, without involving disabled people in these duties.

This will be a great loss to disabled people and the services that they receive.

What this means for profound and multiple learning disabilities?

So, what does all this mean for those with profound and multiple learning disabilities and their families and carers and their long term needs?

The first task is to understand the scale of the challenge. One of the difficulties is to get good data on the number of people we are talking about. I know that Mecap estimated the total number of people with PMLD in the UK to be over 40,000. However, the House of Commons Library was unable to supply me with robust figures. If they do not know these numbers, I suspect policy makers do not either. And if we, and they, do not know the size of the challenge, we cannot properly plan for it.

But plan for it we must.

Education

In planning for the long-term care needs of young people with PMLD we must start with education.

Due to medical advances, many of those with PMLD have the opportunity to live longer lives than in the past. We therefore need an education system that does not attempt to simply hide people away and pretend that they do not exist. That has been one of the chief criticisms levelled at the special schools system. It may have been true in the past but it is certainly not true now. Schools like St Margaret's school here in Tadworth, and the Heart of the Forest Special School in my own constituency demonstrate what can be done to ensure that all children have a fulfilling education that can be tailored for each child's requirements.

We can give every child a meaningful education that will prepare them for adulthood.

Earlier this month I spent a day at my local special school, Heart of the Forest, where I was able to have a very good discussion with Howard Jones, the Headteacher, about curriculum development, plans for post-16 and post-19 education, funding and transition. Even more important from my point of view was to spend some time with the children.

One of the lessons taking place the day I was there was a session using music to focus on sensory skills. One of the students I met, Anne-Marie, faces many challenges in her life but quite clearly was really enjoying both the practice she had in advance and the whole-class participation. Most of the students had African drums, she was able to use an electronic device to enable her to join in with everyone else. Despite my almost total lack of musical ability I was allowed to join in with the class. Taking part reminded me of several things. First, the really big challenges which many of these children face to do things which I take for granted. Second, even with such a short time in the class I could see the different characters and personalities on display. A very good reminder not to put everyone in a box with the PMLD label and treat them as a homogeneous group but to remember the unique individuals involved and ensure they have access to services tailored to their own needs. Finally, despite, or perhaps because of, the challenges I picked up a real sense from the staff of how rewarding it is to work with young people with PMLD. All lessons which I shall try very hard to remember.

We need an education system that will embrace every child in this way and prepare them for their life ahead. I support the Every Disabled Child Matters campaign and their goal to ensure that all children are able to fulfil their potential.

Transition

But what happens to these children when they leave school? It always amazes me that it appears to come as a surprise to social services that a child becomes an adult.

In 2006, a joint Department of Health and education report, "Transition: getting it right for young people" defined transition as:

"a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems."

This is, I am sure, not what many experience.

You can, from birth, pinpoint the precise day when a child will reach the age of 14, 16 or 19. Yet, how often does the need to transition a young person with complex needs from children's to adult services appear to come as a surprise to those that are supposed to be arranging the continuity of care for an individual child?

This should not, and must not, continue to come as a surprise, especially when the wellbeing of a young person, with very specific needs, is at stake.

I had a specific case affecting my own constituents quite recently. Two very worried parents came to see me about their son's move from his current residential education place to a new long term care provider. Unfortunately, it involved several temporary moves before the permanent one was ready and it was all being done at quite short notice - a matter of a few weeks ahead of time. This multiple move would not have been good for their son's physical or mental well-being. Fortunately, the situation has now been sorted out and there will now be just one move to his new long term home.

But I wonder how many young people do not find that solution and are forced to go through repeated change and upheaval, when what they need is support and care through a smooth transition.

There are already processes and rules in place to try and ensure that this does happen. We all know that at 14 there should be a statement review and plans made for the post 16 transition. But how often does this occur properly? Residential places are in such demand that often they need to be arranged well in advance.

Early forward planning is essential. But this is not happening in every case.

I do not wish to stand here, as a politician, and propose a new raft of rules, legislation and regulations that could further burden parents, teachers, carers and social services. I will, however, make this plea: let us all work together to make sure that the current processes and rules are implemented properly. The young people concerned do not undertake a dramatic change on their eighteenth birthday but the effect of that age change has a dramatic impact on the services available or the relationships developed particularly in the case of Looked After Children. Better coordination between children's and adult services is essential. Constant turnover of polices, guidance and red tape does nothing to ensure the continuity of services that many people need.

Adult services

As I have already said, continuity of support and care is essential for the wellbeing of both the individual for whom the service is provided, and those that care for them

Again, the 2006 transition report found that:

"Young people with complex disability present particular problems because often there is no equivalent adult service able or willing to take on their long-term health care and medical supervision."

This puts immense pressure on those who are meant to be looking after them. After years of receiving certain support, they suddenly find that services that they are used to are removed. But simply because someone has reached a certain age, it does not follow that his or her needs have suddenly reduced.

Too often adult services are inflexible and centred around those services that are easiest to deliver, and not always those that are needed most.

But every one is different. They have different requirements.

I am concerned that the current system of care is not flexible enough to provide for the increasing diversity in needs of the most severely disabled people. So often adult social services do not provide the kind of care that individuals require at the times that they need it. We should give disabled people and their carers more flexibility to select the services they need and I do believe that direct payments are one of the best ways of doing this.

I am, however, aware that many people, particularly carers of people with complex needs, will prefer to remain clients of child and adult services, perhaps due to concerns about the extra burden of managing and commissioning the services themselves. We must continue to support everyone that has a need, but the flexibility of direct payments is an excellent way to provide this.

By empowering disabled people and their carers to select the services they want we can free them to arrange their own lives, rather than fit them around the local authority's plans.

Carers

Given the nature of the conditions of people with PMLD, many will need extensive or 24 hour care. We cannot consider their long-term care needs without considering those of their families and carers.

Carers do an amazing job.

I was interested to read the report last week from Carers UK and the University of Leeds showing that the value of the unpaid support that carers provide is now worth £87 billion each year. That is more than we spend on the NHS each year.

We must, therefore, value and support carers. But not just for the money they save the tax payer each year. But also for the sacrifices they make each day, in their lives, due to their caring responsibilities.

Conclusion

Some time ago we set out four tests for any policy for disabled people:

First, does a policy help disabled people live as equal and respected members of society?

Second, does a policy help disabled people overcome the barriers that prevent them from living independently?

Third, does a policy help disabled people make their own contribution to society, whether in a voluntary or paid capacity?

Fourth, does a policy help, support and value the role of families and carers of disabled people?

When we talk about, and plan for, people with profound and multiple learning disabilities some people might query whether or not we should bother asking the first two, or even three, of those questions given the nature and often great extent of some impairments.

We should. By not asking those questions we instantly limit how much we can do for those that have the most severe impairments and fail to recognise their abilities, personalities and potential, which are often so much greater than they seem at first.

It may take weeks or months to learn the intricacies of speech, facial expressions and body language of a severely disabled person. But once one does so it can open up a world of friendship and opportunity. We should not allow ourselves to close that off by assuming that we cannot provide the necessary support.

Disabled children and adults have equal worth in society to anyone else. They deserve recognition and understanding of their needs to live ordinary, fulfilled lives.

Their parents and carers also need help. They need an excellent support infrastructure that addresses their needs and allows families to function efficiently.

We need to offer tailored support solutions that fit around people - not require them to fit the state-provided solution, irrespective of their needs. We need to engage disabled people, parents of disabled children and professionals like you in designing support solutions.

The government has started to recognise these needs. But their vision of change is not coherent, the execution is too slow. We need to speed things up.

Society has changed in the way we recognise disabled people. I believe there is a greater willingness to engage, to listen where once there was ignorance and prejudice. We still have a long way to go, but I have real hope for the future.

By the very nature of their impairments, people with Profound and Multiple Learning Disabilities will face greater challenges than others in accessing the full opportunities and choices that our society has to offer. But that is no excuse for failing them.

We must do what we can to ensure that they can fulfil their own potential, whatever that may be.

I would like to thank once again, our hosts for inviting me to speak to you all today, and for all the work that they do here at Tadworth in improving the lives of so many young people.

I would like to finish with something that David Cameron said nearly a year ago: "These are the most vulnerable people in our society - and they should therefore be the most cared-for, the most well-treated… they are quite simply the most important people in our society."

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