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House of Commons

Friday 1 February 2002

The House met at half-past Nine o'clock


[Mr. Speaker in the Chair]

Learning Disability White Paper

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Woolas.]

9.33 am

The Minister of State, Department of Health (Jacqui Smith): I welcome this opportunity to describe and debate progress made in implementing the proposals in "Valuing People: A New Strategy for Learning Disability for the 21st Century", which was published in March last year.

We estimate that there are around 210,000 people with severe and profound learning disabilities. About 25 people per 1,000 of the population are thought to have mild to moderate learning disabilities. So the total learning- disabled population in England is about 1.2 million. Learning-disabled people can be among the most disadvantaged of an already disadvantaged group. Before we look at developments and the implementation of the proposals in "Valuing People", it is worth remembering why there was a need for a new strategy on learning disability services. What were the problems that people with learning disabilities faced?

The problems fall into three main categories. First, there is the category of social exclusion. As I have said, learning-disabled people can be among the most isolated and disadvantaged groups in our society. Too often, they have faced poor housing, difficulties in being able to work and in using transport and poor advocacy services, and they have had too little ability to make and exercise choices over the care and support that they receive.

Secondly, there has been too much inconsistency in service provision. People are receiving different services in different parts of the country, there are very great differences in the proportion of spending by both local authorities and health authorities throughout the country, and there has not been a sufficiently consistently high level of services, such as day services, for users.

Thirdly, the management of services has too often been dependent on administrative and bureaucratic boundaries, and too little focused on the users' needs. There has been too little co-ordination between social and health services, never mind other statutory authorities. There have been problems with the transition from children's services to those for adults; services have not properly been designed around individuals' needs; and there have been unqualified staff and poor training.

Often, learning-disabled people live isolated lives, knowing only their family and other people with learning disabilities. Research published in 1999 found that only 30 per cent. had a friend who was not learning-disabled, part of their family or paid to care for them. So, more

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than two thirds of people with learning disabilities have no outside friends—no ability in either their social or community life to enjoy the sorts of opportunities that many of us take for granted.

The Prime Minister made that point very clearly in his foreword to "Valuing People":

So those were the problems that we needed to tackle, and "Valuing People", the first White Paper on learning disability services for 30 years, sets out a programme to tackle them.

Published in March last year, the programme is based on four key principles—of rights, independence, choice and inclusion—and lays down a wide-ranging programme of action. The programme includes developing an integrated approach by health, education and social care to services for disabled children and their families; more choice and control through the development of advocacy; enabling more people to receive direct payments; a national information centre; plans to move the 1,500 people living in long-stay hospitals to more appropriate accommodation in the community by April 2004; access to a specialist health facilitator and a health action plan for every learning-disabled person; more choice in housing; a five-year programme for modernising day services; increased employment opportunities; the development of person-centred planning; and stronger partnership working locally.

I shall return to those things later, when I will describe progress in their delivery, but I shall now make some points about the way in which the development and implementation of the strategy has involved learning- disabled people themselves. If we are serious about putting learning-disabled people at the centre of services and designing services around them, it is right—in fact, it is essential—that they are involved in the policy discussions and debates that determine those services.

That theme was summed up in the title of one of the reports published with the White Paper. The report from the national service user group, which worked with us in developing "Valuing People" is called "Nothing about us without us". Work on "Valuing People" began in December 1999, and service users and carers were at the launch seminar; what they said directly affected the way in which we took the work forward. Service users and carers were also members of the learning disability advisory group, which oversaw the whole process. "Valuing People" is the first White Paper to be published both in conventional form and in more straightforward, accessible forms, including tape and CD, so that people with learning disabilities can see for themselves what the Government are proposing. Service user involvement continues as we develop and implement the policy, for example, in the selection of the director of learning disability implementation and members of the support team—candidates were interviewed by people with learning disabilities; the development of a national forum for people with learning disabilities; membership,

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including co-chairmanship, of the learning disability taskforce; and membership of local learning disability partnership boards.

I should like to turn to developments since March in implementing principles in the White Paper. "Valuing People" set out in broad terms our proposals for improving learning disability services. Guidance which we issued in August last year gives more detail, and stresses that "Valuing People" is for all children, young people, adults and older people with learning disabilities and their families; people with severe and profound learning disabilities, through to people with mild or moderate learning disabilities; and people with learning disabilities in the autistic spectrum. I know that concern has been expressed, by the hon. Member for Daventry (Mr. Boswell) among others, about the position of adults with Asperger's syndrome or higher-functioning autism. As we made clear in the guidance, and as I have previously made clear in the House, adults with Asperger's syndrome or higher-functioning autism are not precluded from using learning disability services.

I have already referred to the learning disability advisory group, which oversaw the development of "Valuing People"; we are grateful to its members for their contribution to that work. The advisory group was superseded by the learning disability taskforce, which has the role of monitoring and supporting the implementation of "Valuing People" nationally. It also advises the Government on the continuing development of learning disability policy. The taskforce met for the first time in December; its co-chairs are Chris Davies, director of social services of Somerset county council and Michelle Chinery from the self-advocacy group London People First, who is a user of learning disability services. I am delighted that Chris and Michelle agreed to take on that role. Four other learning-disabled people take it in turn, two at a time, to attend the taskforce.

If we are to involve users in our discussions, it is important that we consider the way in which we organise, facilitate and prepare for those discussions. The taskforce has discussed how to ensure that learning-disabled members can participate fully in its work. That is not easy; we shall have to learn to adjust and adopt new procedures. I should like to tell the House the rules that the taskforce has agreed. It has agreed that people should raise their hand if they want to speak; speak clearly and slowly; look at the person to whom they are speaking; and avoid long words. It has also agreed that only one person should speak at a time; there should be no jargon; and that mobile phones should be switched off—[Hon. Members: "Hear, hear."] I thought that would get a response. I have to admit that when I recently addressed a conference on the implementation of the learning disability White Paper, I was a bit embarrassed because I was not sure that our procedures in the Chamber were up to the high standards that have clearly been set by the learning disability taskforce. We may well learn from the model that it has provided.

The learning disability taskforce operates at a national level. At a local level, where policy has to be implemented and fit the experience of users of learning disability services, learning disability partnership boards are responsible for overseeing and advising on implementation of the adult aspects of "Valuing People".

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The boards are chaired by a senior local government officer or elected member, and the membership includes representatives of statutory sector interests, such as social services, housing, education, health bodies; people with learning disabilities and carers; independent providers; voluntary organisations; community groups; and local employers.

The boards were responsible for developing joint investment plans, which should have been returned to the Department of Health by yesterday, and will help to ensure that the £3 billion spent on learning disability makes the best and most appropriate impact; they will also target the extra £42.6 million available for development from this coming April. The taskforce operates nationally and the partnership boards have been set up locally. We must ensure that we provide support for implementation, which is why we have an implementation support team, reporting to the taskforce through its director Rob Greig.

The team is now largely in post and will be fully operational from this month. Its first priority is to establish links and contacts with partnership boards, looking particularly at the involvement of service users and families, offering advice and support as necessary; and to explore how far the boards have begun to include people from outside the traditional learning disability field. Its next priority is to work with boards on the implementation plans for person-centred planning, on which the Department has recently issued guidance. Another early priority is to establish contact with advocacy, and particularly self-advocacy, groups in each region. The support team will work with partnership boards whose joint investment plans, following the evaluation that will now begin, are found to be below an acceptable standard, to help them take remedial action and ensure that the transformation of local services is achieved. In terms of partnership with others, I am especially pleased that in December, we launched with Mencap a telephone helpline to overcome some of the issues identified in the White Paper in relation to the need for national information to be available to users, carers and those who work with people with learning disabilities. The line has responded to 674 inquiries in its first month.

Those are some of the structures that are already in place, but I also want to deal with two areas where independence, which is one of the key principles of "Valuing People", can be strengthened: advocacy and direct payments. Effective advocacy can make a real difference to the lives of people with learning disabilities. It allows them to express their wishes, make choices, put forward their own views and join in planning and designing their own services. With the right support, many people with learning disabilities can become effective self-advocates. Citizen advocacy can also make a vital contribution to ensuring that the voices of people with more complex disabilities are heard.

Some £1.3 million from the implementation support fund is being used this year to promote advocacy. That includes setting up a national citizen advocacy network. Furthermore, £900,000 of that money is for a scheme to support advocacy projects. I am very grateful for the work of two organisations that are working with us in that regard. The British Institute of Learning Disabilities and Values Into Action are helping to ensure that the money is distributed and support is given in a way that ensures that the most value is added in terms of the advocacy

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work. Bids have been coming in for funding, and decisions will be made within the next few weeks about how we can support those advocacy groups.

I know that concerns have been expressed about funding for self-advocacy groups. We have been considering very closely the funding arrangements for next year. I am pleased to confirm that we have already identified an additional £140,000 that will be available from the implementation support fund from this April. The learning disability taskforce will be discussing funding for advocacy services at its future meetings. I shall want to listen carefully to its concerns and recommendations about how to develop this work. Of course, advocacy groups do not need to look only to central Government for funding. Local government and the NHS at a local level are possible sources, as are European funds and the national lottery. There is an important role to be played in supporting and facilitating advocacy groups in accessing those other forms of funding. Effective advocacy helps people to gain control over their lives.

Direct payments are another effective and popular way of giving people greater control and helping them to make their own decisions about how their care is delivered. I am pleased to say that the number of people with learning disabilities who are receiving direct payments has increased by more than 60 per cent. in the past year. That is good news. It is an indication that progress is being made and that direct payments are increasingly a real option for people with learning disabilities.

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