< Previous | Contents | Next >

The same as you? A review of services for people with learning disabilities

1 Understanding the issues

1 People with learning disabilities have always been part of society. Sometimes they have been treated well, and sometimes they have been treated in ways that are unacceptable. Sometimes what seemed the best approach has, looking back, appeared lacking in understanding. More disturbingly there have been some well-documented serious instances of abuse. Always it has been a matter of how people deal with one another. There are important issues of human rights, responsibilities and social inclusion that we all need to look at if progress is to be made.

2 People with learning disabilities and their families are entitled to as full a life as possible. They are entitled to feel valued and to be included in society. They and their carers generally know best what support they need and they should be at the heart of decisions that affect their lives. Barriers that prevent people getting the right help quickly need to be removed and support services should be improved. We all need a better understanding of people with learning disabilities if they and their carers are to get better services and opportunities.

3 People with learning disabilities need help from a number of different agencies and professionals at different stages in their lives. Generally, people with learning disabilities want, and should be able, to use the local services that everybody else uses. These services need to adapt their approaches to meet the needs of people with learning disabilities. If local services cannot meet particular needs, specialist services should add to, not replace, ordinary services.

Who are people with learning disabilities?

4 There is a range of views about how useful definitions are, and how they apply in different settings. However, it is important to have a definition so that people with learning disabilities get the services and support they need, and so that agencies can plan these services better. Our definition includes traditional descriptions from medicine and education along with details of the support that people need to be able to do the things they would like. We provide a more detailed discussion of definitions in Appendix 3. In the next few years the causes of learning disability are likely to be understood much better. The effects on our social, health and educational services will stay the same.

Our definition

5 People with learning disabilities have a significant, lifelong condition that started before adulthood, that affected their development and which means they need help to:

• understand information;
• learn skills; and
• cope independently.

6 People with learning disabilities should have a range of support and services to meet the following needs.

• Everyday needs

For example, a place to live, security, social and personal relationships, leisure, recreation and work opportunities.

• Extra needs because of their learning disability

For example, help to understand information, support to make decisions and plan, learn skills, help with communication, mobility or personal care.

• Complex needs

For example, needs arising from both learning disability and from other difficulties such as physical and sensory impairment, mental health problems or behavioural difficulties.

7 For any of these needs the level of support will vary. A person with learning disabilities may need:

• occasional or short-term support;
• limited support, for example, only during periods of change or crisis;
• regular long-term support, perhaps every day; or
• constant and highly intensive support if they have complex or other needs which are related.

As one person told us:

8 So people with learning disabilities have a range of needs which will change during their lifetime. Professionals need to help people plan for the future. For many people with learning disabilities, particularly those with complex needs, organisations need to work together with the individual and their family to plan and support them.

People with learning disabilities should have the following.

• Services that promote and protect their health and welfare, help them lead lives which are as normal as possible and are best suited to their needs, whether at home, in schools, health services or other settings.
• Information, advice and help to get education, work and leisure that offers personal fulfilment, consistency and security, best meets their needs and personal preferences, and helps them to be included and accepted within local communities.
• Ordinary homes which are private, secure, comfortable and safe.

People with learning disabilities and their families should:

• have accurate and easily accessible information at the right time about what services and support are available locally and nationally, in a number of different ways;
• be involved when professionals make decisions about what help to provide, so that they can have a real choice about what happens to them; and
• get independent advice and advocacy services when they need them.

Families and carers should have:

• a range of help to support them including training and advice to look after a person with a learning disability;
• access to professionals who take into account and find ways to meet their needs as carers (whether they are parents, brothers and sisters or other family members); and
• access to short breaks.

Communities need to:

• have greater understanding of people with learning disabilities and how they can contribute to the community; and
• be involved in supporting people with learning disabilities and their families to achieve their rights.

Employers need to:

• overcome prejudice associated with employing people with learning disabilities, and play their part in helping them to reach their potential.

How many people in Scotland have a learning disability?

9 We do not have enough detailed information about the number of people in Scotland who have learning disabilities. While there are some reported differences across the UK, studies suggest that, in Scotland:

• 20 people for every 1,000 have a mild or moderate learning disability; and
• 3 to 4 people for every 1,000 have a profound or multiple disability¹.

10 On this basis, there are around 120,000 people in Scotland with learning disabilities. Using information from three local areas which appears to be reasonably thorough we estimate that only 30,000 people are in regular contact with local authorities or the health service in Scotland. Others may have occasional or short-term contacts.

11 Research suggests that 15-20,000 people need a lot of help to cope with daily living². Of these about 25% (4,000 to 5,000) are children and young people aged under 16. A further 25% (4,000 to 5,000) have complex needs which need a lot of support. People with learning disabilities are often not as healthy as the rest of the population. They may need more health support than primary care alone can provide³. As people’s learning disability becomes more severe, so does the likelihood of complex health needs such as epilepsy, mobility and sensory impairment. People with learning disabilities may need support and services because of mental health problems⁴. Around 30% to 42% of children with learning disabilities may need help for emotional and behavioural problems⁵. Older people with learning disabilities have more mental health problems. This is particularly so for people with Down’s syndrome who may get early onset dementia⁶.

12 The number of people with learning disabilities in the UK has increased over the last 35 years. Researchers estimate an increase of 1.2% a year between 1960 and 1995 of people with severe learning disabilities, with a significant increase in those who are older⁷.

13 This means that since 1965 the number of people with severe learning disabilities has increased by 50%. The number of people with moderate needs has probably increased in much the same way.

14 In 1965, many people with severe disabilities were cared for in hospitals, though the then increasing number in hospital in Scotland (about 7,000) included many people with mild disabilities and some who had no disability⁸. By 1998 less than 2,450 people with learning disabilities were cared for in hospitals⁹. The rest, including 90% of those with complex needs, were cared for in the community. These are very significant changes affecting:

• people with learning disabilities;
• their families;
• staff working in local authorities and health settings; and
• society in general.

15 Research suggests that the number of people with learning disabilities will continue to grow by over 1% a year over the next 10 years¹⁰. And, more will live longer, so the needs of people with learning disabilities will change.

Who provides support?

Families

16 By far the most support is provided by parents, brothers and sisters and other relatives. This is a lifelong commitment and it is striking that family carers are often given the responsibility for (and expected to provide) social and nursing care that many professional agencies refuse to offer. Research suggests that:

• 25% of people with learning disabilities have a carer aged 65 or over;
• 20% have two carers aged 70 or over; and
• 11% have only one aged 70 or over¹¹.

Younger and older carers tend to have different expectations. Younger carers may be looking at how best their child can develop, whereas older carers are likely to be worried about how their child will be looked after when they die.

Local authority and health services

17 Local authority and health services include:

• community care services;
• child care services;
• criminal justice services;
• primary care health services provided by doctors, health visitors and district nurses;
• pharmaceutical services;
• dental services;
• ophthalmic services;
• pre-school and school education;
• housing;
• leisure and transport services.

Experiences differ a lot from person to person and area to area. The relationship a person has with primary care services is very important. In some areas people with learning disabilities enjoy the same services in the same way as the rest of the population. In others, professionals do not understand people’s needs properly. It is all too common for people to miss out on, or be inappropriately referred to and accepted by, specialist services. We need local authority and health services to work together better to help people find their way through the system.

Voluntary organisations

18 For many years, voluntary organisations have provided a wide range of very important services and support for adults and children with learning disabilities and their families. The residential and other services they provide are often excellent, partly because of the length of their experience, but mainly because they focus on personal relationships. They are also highly-valued for being realistic and coming up with new ideas, as sources of accurate and accessible information, and for providing effective advocacy.

Specialist health and local authority services

19 Specialist health services in hospital and community settings have been focused more and more on those people with learning disabilities who have complex needs. Community Learning Disability Teams (CLDTs) have developed in most areas in Scotland over the last 20 years. Some are made up of nurses and psychologists, while others have social workers attached to them. Some provide services to adults, while others provide for children as well. Their links to other agencies also vary. Local authority specialist services have increased to meet the needs of the greater number of people with learning disabilities in the community. While CLDTs have provided a valuable service in many parts of the country, we need more consistent structures that make sure they are co-ordinated and reduce the chance of duplication.

Where does the money go?

20 Local authorities and health boards spend about £275 million a year on services specifically for people with learning disabilities. About £115 million¹² is on health services, and £160 million¹³ on social care services. Between 1980 and 1998 the number of people with learning disabilities in hospital in Scotland has fallen by nearly two-thirds from 6,500 to less than 2,450¹⁴. At the same time the number of residents in care homes for people with learning disabilities has increased from 1,000¹⁵ to 4,800¹⁶ with another 600 people living in supported accommodation. We also know of about 900 mostly older people in other homes who have some degree of learning disability. This is a significant shift, although the pace of change in Scotland has been slower than in other parts of the UK and much of Europe.

21 We can see this by comparing how resources are spent in Scotland with England and Wales. In England, health and local authorities spend £59^{17, 18} each year on learning disability services for every person in the population. In Wales the figure is £63¹⁹. In Scotland, the equivalent is only £54^{20, 21}. In part this is to do with the priority given to learning disability services in England and Wales over the last 20 years. In Scotland 37% of the spend goes on hospitals, while in England only 15% is tied up in hospitals. Figure 1 below makes this clear.

Figure 1: Where the money goes England, Scotland and Wales compared

In Wales 74% of total spending goes through local authority community care services, while in Scotland only 58% does. The result is that as well as having the lowest total spend on services for people with learning disabilities, Scotland has even less well resourced community services for people with learning disabilities, their families and carers.

22 Levels and style of service also vary a lot within Scotland. The highest-spending local authority spends seven times as much as the lowest for every person of the total population²². There are also differences in the amount health boards spend; the highest and lowest differ by 37% for every person²³. (This figure does not include the islands.) During the review, people who used services and their carers said that how well they were treated often seemed to depend on where they lived or, indeed, on the different professionals they were working with.

23 Carers said that help was often only provided when there was a crisis (when it was most expensive). They said a little support earlier might have made their lives easier and cost less.

24 Families receive very different levels and quality of service in nearby authorities or even in different areas of the same social work or health authority. The reasons behind many decisions are not clear.

Putting people first

25 Many professionals and managers agree that things need to change to help people with learning disabilities have fuller lives. But change is not easy. Many of the ways local authorities and health services organise accommodation and support for people with learning disabilities tend towards keeping things the same.

26 The review offers an opportunity to change from thinking which is led by services to thinking which is led by people’s needs; from people with learning disabilities having to depend on separate care services, to their being able to use everyday services more.

Seven principles

27 We consulted widely during the course of the review on a number of principles which we thought were central to helping people with learning disabilities lead full and active lives. Seven principles emerged and we have taken account of these in all our considerations and recommendations.

• People with learning disabilities should be valued. They should be asked and encouraged to contribute to the community they live in. They should not be picked on or treated differently from others.
• People with learning disabilities are individual people.
• People with learning disabilities should be asked about the services they need and be involved in making choices about what they want.
• People with learning disabilities should be helped and supported to do everything they are able to.
• People with learning disabilities should be able to use the same local services as everyone else, wherever possible.
• People with learning disabilities should benefit from specialist social, health and educational services.
• People with learning disabilities should have services which take account of their age, abilities and other needs.

< Previous | Contents | Next >