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

5 A full life - what you do

1 This chapter looks at the value of good-quality and stimulating day opportunities and short breaks for people with learning disabilities and their families. It ends with a section which highlights the need for the general public to understand more about learning disabilities.

2 Support for people with learning disabilities, whatever its focus, must strengthen their ability to make their own contribution. This may be either to their community, their family, or their workplace. Those who work with people with learning disabilities need to build on what each individual can do to make a real difference to their quality of life.

Day opportunities - Where we are now

3 Day care costs local authorities about £53 million each year⁴⁸. The number of people with learning disabilities going to social day centres has grown from 4,400 in 1980 to 8,300 in 1998⁴⁹. A place costs about £7,000 a year. In March 1998, hospitals had 270⁵⁰ day places for 489 people, at a cost of just under £2 million⁵¹.

4 93% of people going to day centres do not have paid work⁵². Only 20% of activity in day centres takes the form of education and employment, while 28% involves leisure and recreation⁵³. Similarly, only 25% of sheltered workshop spending goes on learning disabilities⁵⁴.

5 We learned of people going to day centres for many years without a formal assessment. Most people using services who were interviewed as part of our user and carer survey described day centres as boring and lacking in direction. However, they did value the chance to access health services and to meet friends.

6 Carers’ perspectives may be different. Day services give them valuable opportunities to follow other interests, education or work. Carers are understandably concerned at any suggestion that services might be taken away, and their own opportunities restricted. It would be pointless if new developments place heavier burdens on family carers.

7 Many day services for adults are not focused enough on continuous learning and development. Day care is not seen as a stepping stone to new experiences or to employment. It does not challenge and stimulate each person enough.

8 That said, a number of people with complex needs, but particularly those with multiple and profound disabilities and some people with autistic spectrum disorders, will continue to need structured day opportunities. Some day services provide high-quality care and involve people with profound and multiple disabilities in everyday activities in the community (with support). Health boards need to consider developing more outreach services for people in these settings.

The future scope of day services

9 Day opportunities are important to people with learning disabilities. But traditional day services are no longer appropriate descriptions of the ways in which people with learning disabilities want to spend their days. They value a structured day, especially one with meaningful activities.

10 People with learning disabilities want fuller lives, and to be able to join in more with others in the community. Services need to be more flexible and meet people’s needs if this is to happen. Local authorities need to look at their current day care services to see how they can include people more in the community.

11 The role of day centres should change. They should increasingly become resource centres, offering only some in-house activities and support. They need to use more community resources and help people with learning disabilities get continuing education and development, real jobs and more involved in sport and leisure activities. Community education also has an important part to play. Local authorities are currently drawing up their first community learning plans which have to include the needs of people with learning disabilities. Nobody should go to a day centre full time, but they could use it as a base to identify and go to activities in the wider community. In some areas day activities can come to the person (for example, one-to-one outreach), or to a group.

12 Local authorities will want to give particular care and attention to how day opportunities can meet the needs of people with multiple and profound disabilities or those who may not be able to benefit from employment or continuing education. Opportunities will vary from person to person but need to focus on personal and social development. Services will need to be available for people with specific and other health needs. Good day opportunities are particularly valuable to people who have challenging behaviour⁵⁵. Organisations will need to provide appropriate staff training to support these changes.

14 Local authorities should be able to use existing resources better by taking advantage of services and opportunities in the community and looking for real jobs. This is an approach already used in many areas which are successfully remodelling services. However, changing the current style and shape of services will take time. Extra money from a ‘change fund’ would help to make that shift.

Recommendation 15 Local authorities and health boards, should both examine what they provide and develop more modern, flexible and responsive services which support people in the community through employment, lifelong learning and getting them involved socially. Day healthcare services for people with learning disabilities should be mixed with those in the community.

New opportunities for lifelong learning and development

15 Lifelong learning is important to people’s development and provides opportunities for people to feel more included. The Higher Still Programme provides a framework for people of all abilities, from those with profound learning difficulties through to those sitting Advanced Higher. So, it could offer young people with disabilities excellent opportunities for lifelong learning.

16 Many people with learning disabilities already take part in educational activities within day centres and in further education. There is a lot more scope for continuing education to play a bigger part in their development. Well-planned learning opportunities can have significant and long-lasting effects. They can improve the quality of life for people with learning disabilities and help them to take advantage of other activities and employment. They can also help them to develop independent living skills so that they rely less on others.

17 The main recommendation of the Beattie Committee is that post school education should aim to include more people. This should mean that it is better designed and delivered to meet the needs, abilities and hopes of young people within a supportive environment. What is provided should match needs rather than asking the young person to adapt to the learning environment.

18 Adults with learning disabilities, like any other adults, need learning opportunities throughout their lives. They want to learn skills for work, enjoy leisure activities, improve their skills (especially communication) develop self-confidence and self-advocacy, and learn to use facilities in their local communities.

19 Most further education colleges are now controlled by new boards of management. They have an important contribution to make to post school learning. Colleges, training providers and local authority community learning services should work together to make sure that an imaginative range of opportunities is available. They should work with those who provide other services to make sure that learning is relevant to the individual and consistent with the needs assessment and ‘personal life plan’.

20 The Beattie Committee asked the Learning Disability Review to consider whether their proposed National Action Group should set up a challenge fund to support and test work on improving access to continuing learning for those who need a lot of support. We approve of this recommendation, but would want to widen the opportunity to access continuing learning to all people with learning disabilities. The Director of our proposed Scottish Consortium for Learning Disability should be a member of Beattie’s proposed National Action Group to make sure the voice of people with learning disabilities is heard on employment issues at a national level.

Developing employment opportunities

21 Many people with disabilities want a decent job. They want to get on in life and have friends at work. The Scottish Executive’s social inclusion strategy ranks having a job high in the list of measures to help people to be included in society. Employment has, so far, rarely been an option for people with learning disabilities. If they are to be usefully included in society, that has to change.

22 During the course of the review we heard about some very successful employment projects. Many of these have been created by the voluntary sector, for example, Enable in Paisley. Others include Jobs 4 All, a not-for-profit recruitment agency for people with disabilities run by North Highland College, and North Lanarkshire Council’s Supported Employment project. They focus on helping people with learning disabilities get real jobs. The Employment Disability Unit in Dundee has had considerable success with a job club, a sheltered placement scheme and a work experience programme. We met people who had gone to day centres for over 20 years and who are now satisfactorily in full-time jobs. Unfortunately there are only a few of these projects. One person told us:

23 The New Deal for Disabled People is experimenting with new ideas. Personal adviser services will be the first step in transforming the way in which the benefits system supports disabled people who want to work.

24 Many employment projects centre around employment development workers. They need a broad range of skills from negotiating and marketing, to offering on-the-job support and training, and working with parents and others. They match the employee to a job and train and help him or her into employment. They also provide gradually-reducing support in that employment. Some New Deal for Disabled People pilot schemes include development workers. The responsibility on the employer is to treat and support their employee with learning disabilities in exactly the same way as any other. Those who employ people with learning disabilities have shown they value them.

25 Employment development workers should:

• work towards including people with learning disabilities in ordinary work settings;
• help people find jobs which offer the same pay, terms and conditions as employees doing the same kind of work;
• offer people the necessary support to be able to work on their own, with appropriate risk assessment and management; and
• help those with complex needs to find work and provide ongoing support where necessary.

26 However, real jobs may not be everyone’s aim. Opportunities also have to be found for ‘tasters’, part-time opportunities and voluntary activities. There is still a place for sheltered workshops. Whatever the setting, the aim ought to be to help the person develop, and wherever possible to get them fully involved in society.

27 Employing people with learning disabilities or arranging it is not the responsibility of any single agency. Agencies involved in care, health, employment, benefits and indeed in the business world need to work together. As we mentioned earlier, the Beattie Committee is proposing a National Action Group. But it is likely to consider strategies and practical approaches to developing employment, for example, in promoting social firms which help young people move into employment. We suggest that Enable, as the national organisation for people with learning disabilities, should contribute to this work. And, local authorities and health boards could give a lead to local employers by taking on more people with learning disabilities.

28 Supporting people into employment offers them the opportunity to be included, to gain more self-esteem and to meet new people. It can also be cost effective for authorities, compared to the cost of day care (£7,000 for each place each year). Moreover, once the support is withdrawn, local authorities can use that same resource for someone else. In terms of comparing other costs, we were told that a ‘Training for Work’ place costs about £3,200, and that the Department of Employment will pay up to £4,760 for a full-time worker on a supported employment scheme. So, there can be advantages for people and local authorities in following-up employment led solutions.

Recommendation 16 Local authorities need to give much greater priority to developing a range of employment opportunities for people with learning disabilities. And, with health boards those authorities should lead by example in employing more people with learning disabilities.

Enough money to join in?

29 Benefits play a big part in the lives of people with learning disabilities. Most are not, or have not been, wage earners, and benefits are often their only source of income. So their ability to lead a normal and fulfilling life is governed by benefits. Making the most of income from benefits is an important part of the Scottish Executive’s plan to include more people in society.

30 Some benefits provide a source of income for everyday living expenses (Severe Disablement Allowance, Income Support, Housing Benefit, Incapacity Benefit and so on). Benefits also help people who may be able to work to gain employment. There are a number of New Deal initiatives to help people on long-term Incapacity Benefits move into work. These include the following.

• Increasing the therapeutic earnings limit in Incapacity Benefit and Severe Disablement Allowance to £58 a week from April 1999. Disabled people who carry out therapeutic work can then benefit from the national minimum wage.
• Introducing a 12-month linking rule for people on long-term incapacity benefits in October 1998 to reassure them that they can try work without losing out if they fall ill again.
• Removing the 16-hour restriction on the amount of voluntary work that people can do who receive incapacity benefits.
• Piloting (for a year from April 1999) a package of four measures in 15 areas (including south-west Scotland, Grampian and Lanarkshire) to help people with disabilities who want to return to work. The pilot allow those on incapacity benefits to earn a small amount of money (up to £15) without losing benefit; and to try out a job for a trial period while still on benefit. They also allow access to a Jobmatch payment of £50 a week for people moving into part-time work; and a Jobfinder’s Grant of £200 for those starting full-time work.

31 Users and carers told us that the New Deal for Disabled People is still in pilot form. Unfortunately, since most people with learning disabilities do not get Jobseeker’s Allowance, they cannot join the main scheme. However, the experience of the few people with learning disabilities who have been able to get through the system suggests it is effective in helping get them into employment.

32 Benefits also help with the other costs of disability. The Independent Living Fund (ILF) is a trust fund which can make discretionary grants. It can make life better for some people by supporting independent living. People do not always understand why some people get it and others do not. More specifically, the limit on earnings for support under ILF may have had a negative effect on getting people to work. For that reason, the Government has increased the limit they can ignore on earnings under the fund.

33 People who have been in care homes since 1993 and have preserved rights to higher DSS benefits are worried about moving to other housing options. The Department of Health and the Department of Social Security are currently looking at the effects on local authorities if they have preserved rights cases transferred to them.

34 A person’s ability to make financial decisions for themselves is often governed by the decisions of others. For instance, someone in a registered home would have their care and accommodation costs paid for, but would be left with only a small income for them to use. The same person in a supported living setting could be left with much more choice about how to use this money. Charging policies can eat away personal income in accommodation which is not registered. Different decisions on Housing Benefit at a local level can lead to different outcomes for people.

35 The benefits system is complicated and getting the right advice and help is essential. The range and level of benefits varies considerably according to personal circumstances. The research paper we commissioned identifies some of the difficulties people face in getting benefits⁵⁶. People with learning disabilities and their representatives told us repeatedly that they found the benefits system difficult to understand and to find their way around.

Recommendation 17 The Scottish Executive should consider raising, with the Department of Social Security, specific areas of concern related to benefits and support for people with learning disabilities.

Leisure and recreation

36 Leisure and recreation are important to all of us, and we do not all like to do the same things. This is also true of people with learning disabilities. Currently about 28% of activity in day care takes the form of leisure and recreation inside and outside day centres. Much of this time is spent with others who have learning disabilities.

37 A better approach would be for people to mix with others of their own age and interests in the community. If these links do not exist at the moment, agencies need to encourage and develop them. Befriending schemes can help with this. People with learning disabilities need to be involved in activities enjoyed by the public generally. They need to use public facilities more alongside non-disabled people, with less segregated sessions, events, shows and activities. In reviewing their day care opportunities local authorities should consider developing befriending schemes and links with other community groups.

Transport

38 Getting around means a lot to people with learning disabilities. During our review it became clear that they are not satisfied with local transport services. Improving transport for people with learning disabilities means:

• for the less able, having access to special transport for care and social activities;
• for those who are more able, making more use of public transport (either on their own or with others), wherever possible; and
• having a transport system which meets people’s needs.

39 Developments such as the Scottish Executive’s rural transport initiative are helping certain areas, but we think we need better transport networks generally. There are already arrangements in place within Scotland and the Department of the Environment,Transport and the Regions (DETR) on issues such as access.

40 Training drivers is also important. DETR issued guidance in 1997, ‘Taking Care of Your Passengers’, and bus operators throughout the country have just issued a video ‘It’s a Bloody Nuisance’ related to the needs of people with disabilities. Closer to home, the Scottish Executive is shortly publishing a research study, ‘Transport Provision for Disabled People in Scotland’, which identifies gaps in the current system and recommendations for action, locally and nationally. This offers a new opportunity to look at concerns in Scotland.

41 Timetables need to be very clear if people are to understand them. And, bus drivers need to realise what the needs of people with learning disabilities are, which may not be obvious. To overcome this, one group has produced a small card explaining that the holder has a learning disability, and inviting the driver to remember this. It has been widely welcomed by both drivers and users and is a good example of an effective idea which is relatively cheap to put into practice.

Recommendation 18 Local authorities should review their local transport services, to make sure that people with learning disabilities can use public services wherever possible.

The importance of short breaks — where we are now

42 Most people spend time away from their parents and families. They go to school, they visit relatives and friends, and spend time with other people, doing different things. Children have tea or stay overnight at a friend’s home, adults may see friends, partners or colleagues outside their own home, go to leisure facilities or clubs, or do evening classes. People with learning disabilities, and their families often need help to arrange these simple but very important matters. One carer told us:

43 Research on respite care suggests that what is offered is directed more at carers’ needs rather than the needs of people with disabilities⁵⁷. Many families are unhappy with the term ‘respite’, and prefer to use ‘short breaks’ which shows that the services should be designed to meet both sets of needs.

44 Where families have access to a short break service they value it highly, but they report they rarely receive enough to meet their needs. While the number of services providing short breaks has grown a great deal over recent years, they are still not meeting the demand⁵⁸. And the effort needed to actually get a short break can be tiresome. We were told:

45 The number of children with learning disabilities in mainstream and specialist education in September 1998 was 8,800, but there is no record of the numbers within this group who need or actually receive short breaks⁵⁹. The Accounts Commission produces information about the numbers of all children with disabilities in each local authority who received respite care at least once. They found that out of 3,800 children assessed (in 1997-98) as needing a respite place, 3,300 actually got one⁶⁰. Because these figures include children with other types of disability, it is not possible to give the exact number of children with learning disabilities who actually received respite care. These figures also do not include those whose needs are not assessed. We do know that where new respite for children has been developing it tends to focus on the needs of children with learning disabilities⁶¹.

46 The Accounts Commission also produces figures for adults with learning disabilities in each authority who received respite care at least once. These tell us that the number of short breaks provided across Scotland varies a great deal. For instance, an adult with learning disabilities in one area is 11 times more likely to get a short break than someone in another. Overall in 1997-98, out of 3,600 adults assessed who needed a short break 3,200 got a service. Again it is relevant to note these figures do not include those whose needs are not assessed.

47 Using long-stay hospitals for respite for people with learning disabilities continues to grow. Out of 4,100 people with learning disabilities who went into hospital in the year to March 31 1998, 3,400 people went for holidays and respite. A sizeable number were children. (However, it is likely some people will have been counted twice as some may have had more than one period of respite care during this time⁶².) As long-stay hospitals run down, local authorities and health boards will need to provide appropriate alternatives in the community. And, many general hospitals continue to provide respite for children in long-term paediatric wards. This is usually for children with special medical needs, and on an unplanned basis.

48 There are good examples of jointly-funded short break services for children with complex needs in community settings. Nursing staff work alongside organisations providing social care to meet healthcare needs. This prevents using hospitals unnecessarily.

49 What is clear is that the chances of being able to get a break varies significantly across the country and there is still a need for more short breaks for both children and adults. While there is an overall shortfall in what is being provided, it is difficult to work out accurately by how much.

50 The Scottish Executive launched their Strategy for Carers in Scotland in November 1999. It means local authorities need to spend £10 million of their grant-aided spending for 2000-01 on services for carers (including short breaks), £5 million from their present budgets and a further £5 million from the new resources made available in that year. The Scottish Executive wants to formally involve carers’ organisations in considering how these resources should be used. This should lead to a real increase in short breaks. Ministers have made it clear they will consider targeting extra resources if it does not. The Scottish Executive will monitor the outcome of the carers’ strategy for people with learning disabilities. However, we were so struck by the pressure on families of people with learning disabilities that we believe there will be a need for further investment. A carer told us:

A structured approach to planning short breaks

51 We see two main themes coming from the review.

• Families want more breaks and want flexible planned breaks at home and elsewhere.
• Parents want a wider range of social and leisure experiences for their families through better access to mainstream play and out-of-school activities, child care services, education and leisure facilities.

52 Short breaks need to be flexible and meet the individual needs of children, adults and those with more complex needs. Carers of people with learning disabilities need better support if they are to continue to care and avoid caring crises.

53 Good arrangements for short breaks and shared care depend on simple procedures. Whether the short break is provided by another family or by an agency, the worker’s role is to help with this process. They need to be as flexible as possible.

54 No child or adult should have a short break in a hospital setting unless they are in need of specialist treatment or assessment that cannot reasonably be provided elsewhere.

Recommendation 19 Health Boards should contribute funding and resources (for example, training for residential and family carers) to developing community-based short breaks alongside local authorities. Local authorities will also be able to bid for any ‘change funds’ which may be made available for further developing short breaks for people with learning disabilities.

Recommendation 20 The Scottish Executive and local authorities should review their guidance and procedures to make sure that local authorities and health boards can arrange their short break and shared care arrangements for children and adults flexibly and with as little bureaucracy as possible.

Public attitudes

55 We paid for research to find out about public attitudes to learning disabilities by surveying over 1,000 adults in Scotland⁶³. Most felt that people with learning disabilities are just like other people and have the right to live, learn and work alongside everybody else. Most thought that people with learning disabilities should not live in hospitals. However, the survey also showed that ordinary people do not know very much about learning disabilities and that this may lead to prejudice and confusion.

56 Giving people with learning disabilities a more positive profile in communities and schools is an important step on the way to changing public attitudes. Research shows that effective strategies for changing public attitudes work best when there is a positive personal contact for example, helping a customer with learning disabilities. Sharing relevant personal information such as encouraging people with learning disabilities to talk about themselves and their lives, also works well.

57 Regrettably, bullying and harassment are all too often part of the life of people with learning disabilities. A recent report says that 65% of people who took part had experienced bullying; 38% of them said it happened regularly⁶⁴. Many of those responsible were children and young adults. Most victims felt uncomfortable about reporting incidents. If they did, it was effective in 38% of cases.

58 It seems obvious that the general public needs to have a better understanding of people with learning disabilities. That need is greatest among children and young adults. The Scottish Executive has already a programme against bullying in schools.

Recommendation 21 There should be a long-term programme to promote public awareness about learning disabilities and including people with disabilities in the community. This should include programmes from the earliest years of education. The new centre for learning disability could be responsible for taking this forward.

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