Valuing People: A New Strategy for Learning Disability for the 21st Century. An extract from the White Paper published in 2000.

The term learning disabilities is used here, as it is the official term for intellectual disability in England.

Definition
Valuing People defines learning disability as including the presence of:

  • A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with
  • A reduced ability to cope independently (impaired social functioning);
  • Which started before adulthood, with a lasting effect on development.

Learning disability does not include all those who have a learning difficulty, which is more broadly defined in education legislation.

Numbers:
We estimate that there are around 210,000 people with severe and profound learning disabilities. About 25 people per 1000 population are thought to have mild to moderate learning disabilities. 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. You can't tell just by looking that someone has a learning disability - not like physically disabled people, or people with sight or even hearing problems.

And 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% had a friend who was not either learning disabled or part of their family, or paid to care for them. So over two thirds of people with learning disabilities had no "outside" friends.

The Prime Minister, Tony Blair, made the point in his foreword to Valuing People. He said:

"People with learning disabilities can lead full and rewarding lives, as many already do. But others find themselves pushed to the margins of our society. And almost all encounter prejudice, bullying, insensitive treatment and discrimination at some time in their lives. Such prejudice and discrimination - no less hurtful for often being unintentional - has a very damaging effect. It leads to your world becoming smaller, opportunities more limited, a withdrawal from wider society so time is spent only with family, carers, or other people with learning disabilities.

Background
Why was there a need for a new strategy on learning disability services? What were the problems people with learning disabilities faced? They fell into three main categories:

  • Social exclusion - learning disabled people can be among the most isolated groups in our society.
  • Inconsistency in service provision - people getting different services in different parts of the country. 1999 report Facing the Facts clearly showed a great variation across the country in the availability and coverage of services.
  • Management of services.

Social exclusion
This can include:

  • Poor housing
  • Difficulties in finding work
  • Difficulties in using transport
  • Few friends apart from families and carers
  • Poor advocacy services
  • Not many people using direct payments - a real way to make voice and spending power heard.

Inconsistency

  • Big differences in what councils spend and what people can expect in terms of services.
  • Some good day services, some bad.

Management

  • Barriers to accessing the same health care as other citizens
  • Social services and health service not working together
  • Poor liaison within social services, often at the point of transition, where adult services take over from children's services
  • Services not responding to people as individuals - people fitted to services instead of fitting services to people.
  • Unqualified staff and poor training

Valuing People is based on four principles - rights, inclusion, choice and independence. It is a cross-Government initiative, which looks at everything from social services to health and education to employment and housing.

It is the first White Paper on learning disability services for thirty years, and the first White Paper to be published in both a conventional form and a more straightforward, accessible form so that people with learning disabilities could see for themselves what the Government was proposing.

People with learning disabilities are:

  • More likely to experience mental illness
  • More prone to chronic health problems, epilepsy, physical and sensory impairment.
  • Poor oral health may lead to chronic dental disease
  • Increasing life expectancy leading to more age related diseases - stroke, heart disease, respiratory disease and cancer are all likely to be of concern.

An increasing number of young people with severe and profound disabilities have complex health needs.

The NHS Plan makes a commitment to care for all, including people with learning disabilities, based on clinical need, shaping services around needs of individual patients, families and carers and reducing health inequalities.