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

4 A full life - where you live

Where we are now

1 As we said in chapter 1, the number of people with learning disabilities generally has increased by over 1% each year over the last 35 years. Estimates suggest that there are about 120,000 people with learning disabilities in Scotland (up to 20,000 with severe disabilities), compared with 83,000 (and 13,000 with severe disabilities) about 35 years ago. This trend will continue for at least another 10 years. As a result more people are living with their families or on their own and can access local services, in the community. This means that these local services are being asked to meet needs more than ever before.

2 Most children and adults with learning disabilities live with their own families. The number reduces as they get older but many still live with their families in middle age. A small number already live in their own homes. In 1998, just under 2,450 people with learning disabilities still lived in hospitals³⁷. About 4,800 lived in residential care or nursing homes for people with learning disabilities^{38, 39}. About 600 lived in settings with good visiting support⁴⁰. The range of those supported living options has increased a great deal in recent years.

3 The numbers of people in hospital have reduced from nearly 6,500 in 1980 to fewer than 2,450 in 1998 (an estimated 2,200⁴¹ in 1999) and they are still going down⁴². There are now 25, mostly small, hospital sites. Two (with 360 places) have Ministerial approval to close. Firm proposals to close sites apply to another 950 places and sites with a further 350 places are gradually being scaled down when appropriate replacement services, care and accommodation are set up. (There is no timetable for this action.) In the short term, on health boards’ current plans, the largest institutions will close by the end of 2002, leaving about 700 to 800 places in total. The larger sites include Merchiston (179), Kirklands (179), Craig Phadrig (53), Strathmartine (99) and Ayrshire and Arran (110).

4 Reducing the number of around 4,000 people in hospital has been broadly matched by an increase in the number of people in nursing or residential care homes. This group now make up 66% of total residents, compared with 14% in 1980. And, about 600 people now live in informal supported accommodation. This suggests that while many more people now live in less institutionalised forms of care, the increase in the number of people with learning disabilities in Scotland has been supported by community-based, rather than hospital or residential or nursing home services. In neither case does this mean that people in the community are living as independent lives as possible.

Where we want to be

5 In future, both children and adults with learning disabilities should, wherever possible, be supported to lead a full life with their families or in their own homes. Some people may be best in a setting which is not an ordinary house owned or rented by them or their family. But whatever it is, it should allow them to live a full life and be included in society while providing privacy and allowing them to develop. Hospitals are not places where people with learning disabilities can live full lives. We asked someone we met in hospital what he wanted out of life. He said:

6 What would supported living look like which successfully promotes choice and independence? We surveyed examples in Scotland, and paid for research on the position in other parts of the world^{43, 44}. People want the following.

Choice of bricks and mortar

People want a full range of housing options in which they may live in groups or on their own with support. Supported individual or joint tenancies and ‘assisted home ownership’ are popular.

To make the decisions about where to live

Housing solutions should be based on discussing them with the person with a learning disability.

A network of active support

This should come from staff on site, peripatetic support staff or local domiciliary services, to help individuals live in the community.

Flexibility

The people being supported will change. Some will become frailer and some moving into the community will respond positively to a change of environment and begin to be less dependent. Services need to adapt to people’s needs as they change.

To build links with neighbours and the community

We cannot separate accommodation from other areas of support for daily living. This should include considering how to help people form neighbourly relationships and use local services.

Consultation

People need to take part in consultation to inform strategic planning for housing services.

7 This chapter recognises the growing pressures on local authorities and others to meet, appropriately, the accommodation and care needs of an ever-growing population of people with learning disabilities who live in the community. It also recognises the need to provide supported living options for most people currently in long-stay hospitals or care homes. Change is necessary at a number of levels, some of which will have greater priority than others. Supporting people better in the community and closing long-stay hospitals must come before the much more gradual shift from care homes to supported living. This will cost money, but we have to judge the benefits to people against that cost.

How do we get there

8 Two pieces of research on the costs and benefits of different support models have been or are about to be published. One compares the costs and values of housing, residential campuses on NHS sites and village communities⁴⁵. The other compares the costs of a variety of settings, for people with low, moderate, high and intensive needs

9 These studies show the relative total costs and the benefits of a range of options. The table below, based on these studies, shows the range of costs according to need. Comparing costs is not always what might be expected (partly because of the limited size of the sample). Options providing independence and choice cost more for people with intensive needs, but may cost less for others with lower levels of need. Adult placements consistently cost less across the range of needs.

Figure 2 Total costs of different types of care

Note 1 This mainstream housing is usually self-contained and linked with other accommodation through a shared support service.
Note 2 This is group units of accommodation on a single-site, with support usually from a specific team.

10 By comparison, a nursing home place in Scotland costs about £21,000 each year and a residential place about £26,000 each year. The total cost of a hospital place is about £45,000. This cost is higher because of some non-recurring, double-running costs.

11 These studies bring out three main messages. First, on a range of measures, NHS residential campuses offered poorer-quality outcomes than housing. Second, costs vary significantly from model to model, both within and between categories of special needs. Carefully matching individual needs with the model of care is essential in terms of both care and costs. Third, although small group living costs more than living in larger groups, it has considerable advantages for people with learning disabilities. These advantages include:

• better staffing;
• a reduction in the use of anti-psychotic medication;
• an increase in access to independent advocacy;
• an increase in choices for residents;
• an increase in becoming involved more socially;
• an increase in hours of scheduled activities during the day; and
• an increase in the number of recreational and community-based activities.

12 Better outcomes also rely on other factors for example:

• carefully assessing and planning for, the needs of the person;
• the choices available being clearly presented to the individual, their carer or advocate; and
• support staff being trained to help the person live in the community.

13 The research evidence and indeed local authorities’ own best-value reviews point broadly towards the benefits of supported living as opposed to residential care. Older people (75 and over) with learning disabilities who have spent a large part of their lives in a long-stay hospital may consider a move to a nursing home. As with others what the person prefers is important in making the decision. But for younger people, other solutions are best.

14 Recognising people’s changing needs is important. The support individuals need in the community will, in some cases, reduce as their experience and confidence grows. In other cases needs will increase. As a result of this, the cost of the support will change.

15 In coming to decisions on the best care option for each person, local authorities should fully take account of:

• the costs of various care options;
• the possibility that people’s need for support may well reduce as they settle into their new lives or may increase as they grow older; and
• the benefits to the individual of supported living options.

People already living in the community

16 Most people with learning disabilities live in their own or family homes in the community. They and their families will have new or changing needs and expectations in future. Young adults may want to move to a home of their own. Younger parents may increasingly expect their child to live independently, whereas older parents may be more concerned about who will look after their child when they die. Others may not have the right package of housing and support to help them live properly in the community.

17 Some will benefit from other changes proposed in the review, such as better respite care and direct payments which give better and more flexible care. If they need a new or extended package of housing and care we expect agencies to provide this in line with the aims of the review. Our user and carer survey, submissions and other sources all confirmed these pressures, but did not put a cost to them. However, they are probably the greatest priority. We would want to use any ‘change fund’ to make progress.

Providing services in the community instead of long-stay hospitals

18 Learning disability hospitals have provided a resource for people, often with complex needs or who are statutorily detained, because it would not be possible to support them in their own home or in local community settings. They also provide short-stay assessment and treatment facilities, respite care, palliative care for people with gradually worsening conditions (such as Down’s syndrome combined with dementia), and day care.

19 We decided that people’s homes should not be in hospitals. Hospitals are not appropriate settings for social care, and they are not necessary settings for most healthcare. Over the next five years, services should be built up in the community to allow the long-stay hospitals which are left to close by March 2005.

Recommendation 12 Health boards should make sure they have plans now for closing all remaining long-stay hospitals for people with learning disabilities by 2005.

20 However, we will need to keep a small number of in-patient places for some people with learning disabilities.

These will be for the following people.

• Those whose need for specialised or complex health assessment or treatment cannot be met in the community (probably not more than 150 to 200 people in Scotland). We will need clear conditions for using these facilities to make sure that people with learning disabilities move on from them to more appropriate care settings as soon as possible.
• People on statutory orders (currently 178 ), some of whom will be offenders with mental health problems. The government is currently reviewing the law on these cases and proposals are currently out for consultation. Changing the law may lead to other care options.
• A small number of people whose treatment may be lengthy or who need a more supportive setting for a long period.

21 We estimate that we may need a total of 300-400 places across Scotland to cater for those needing in-patient assessment and treatment and, under the present law, those on statutory orders. We believe there will be an increased need for assessment and treatment places as long-stay hospitals close.

22 Local authorities and health boards should meet the continuing care needs of people with learning disabilities, as far as possible, in their own homes or in small domestic settings in their own communities. They need to develop ways to improve joint working to make sure they meet health needs, where possible, outside hospital.

Recommendation 13 Health boards should aim to reduce their assessment and treatment places specifically for people with learning disabilities to four for every 100,000 population across the country as a whole. Health boards should plan for appropriate community services to avoid in-patient assessments and treatment.

23 As long-stay hospitals and homes are closed, health boards should transfer part of this cost to local authorities who will become responsible for the care needs. Health boards will hold back an element for health services in the community. Local authorities will pay any extra social care costs from the increasing resources made available to them for their social work services (£1.1 billion in 1999-2000).

24 Under their existing financial plans, by 2002, health boards and local authorities will have resettled most of those living in long-stay hospitals in 1998. However, to close long-stay hospitals will mean losing another 700 to 800 places from 2002 to 2005. Bridging costs to the NHS for 800 places might amount to about £9 million a year (about £35,000 for each place) over that period. Health boards’ general allocations include an amount for the costs of moving people as hospitals scale down and new services are added in the community.

Recommendation 14 Health Boards with sites remaining after 2002 should develop, with their partners, other services in the community as a priority and set aside resources to meet these costs. This will feature in planning guidance and the boards’ performance management arrangements.

25 In considering how to provide for the 700 to 800 people who will still be in hospital in 2002 (less those who need assessment and treatment and those on statutory orders) local authorities will need to recognise that while some residents will be older and so more likely to be suited to nursing or care homes, most will need more imaginative options.

26 We became aware, during the review, that local authorities are having some difficulty in arranging supported living options. Nursing homes are being used more and more, partly for economic reasons. And significant numbers of people who expected to leave hospital to go to supported living are now moving into large group homes or nursing homes. We think this should be avoided wherever possible.

27 The total cost (including healthcare costs in the community) of providing a mix of adult placements, small group homes, supported living and nursing or care homes would be £17.3 million for 400 people. This would compare with the recurring hospital costs for 400 people of about £15 million (see appendix 4). New hospital places might require capital of about £18 to 25 million over three years. Some of this may be paid for using the proceeds of selling sites. Other capital charges may be about £1.5 million each year.

28 So if we take revenue, capital and bridging finance together, the cost of providing for 700 to 800 people in the community less the 300 to 400 who will stay in the NHS will be about:

• £2 million of extra revenue each year for local authorities by year three;
• £1.5 million for other capital charges (NHS);
• £9 million over three years of non-recurring bridging finance (NHS);
• £6 million capital for housing, spread over the three years⁴⁶; and
• £18 to 25 million of health capital, spread over three years, which could be paid for using the proceeds of selling sites.

The NHS would still fund the other 300 to 400 places, at a cost of around £15 million each year.

Healthcare for people leaving long-stay hospitals

29 We should meet the general healthcare needs of people with learning disabilities in the same settings as the rest of the population. We should meet specialist needs related to their disability in the least restrictive setting possible, and ideally in the community.

30 Hospitals currently oversee the day-to-day medical and health needs of residents, including screening. Developing services in the community, including health services, is the way ahead. This means developing a new structure to assess and support people in different settings, including people with more complex needs. Some are already in place and working effectively. Trained nurses are working alongside social care staff in a person’s own home or in other community settings. Some areas have developed plans, supported by training, to allow non-health staff to give medication and carry out other health-related tasks.

31 Extra support for people with challenging behaviour or offending behaviour has also led to more people being able to live in the community and use mainstream services. These are good examples of developing links between learning disabilities, other specialist services and older people, mental health and physical disability services, and they lead to our relying less on sending people into hospitals. We look at primary and general healthcare again in chapter 6.

Making sure there is quality for people living in care homes

32 For some people, nursing home or residential care will be appropriate forms of care. We are improving the quality of care in both these and other settings. The Scottish Executive is committed to setting up a new organisation, the Scottish Commission for the Regulation of Care (SCRC) in 2001 to make sure the quality of care wherever it is provided is consistent. This applies in someone’s own home, in a care home, or in supported living. The Scottish Executive has set up a National Care Standards Committee to draw up national standards for care in all these settings, with people’s quality of life as the central focus. But whatever the setting, quality has to be determined from the inside, rather than enforced from the outside. It has to be part of planning services, and providing and monitoring them.

33 The emphasis on including people in society, and on continuing development applies equally to residential or nursing home care. Individual solutions, based on individual needs and choices, should always be the aim.

34 Some local authorities are already examining the role and functions of residential care, most of which is provided by the voluntary sector. One has carried out a best-value study. Its conclusions point broadly in the same direction as our review, in other words helping people stay in supported living. However, achieving the better outcomes will be more expensive. There will also be costs involved in getting there.

35 We expect change in two ways. First, people who used to go into residential care (about 400⁴⁷ each year) or nursing homes (unknown, but quite small) will instead be placed in other forms of accommodation, wherever possible. Second, as part of the change of direction locally, some people will move out of residential care or nursing homes to more suitable settings. We see this as a gradual process based on considering the availability of suitable accommodation and support locally. Local authorities and health boards need to include people with learning disabilities currently living in homes for other care groups in these considerations.

36 About 1,800 people classed as being in a ‘residential home’ already live in supported accommodation of different sorts. Over time, and recognising the local nature of these considerations, we expect to see a shift to the pattern of care. We expect:

• considerably fewer people (including older people) in nursing homes; and
• most people in various forms of supported accommodation, with particular emphasis on adult placements, small group homes and supported living arrangements.

37 This review has given a lead on the direction we want to travel. Decisions about the need for, scale and pace of any shifts are best left for local decisions.

38 There will be some extra costs, but also benefits for people. This is one of the areas where a ‘change fund’ would clearly be a good idea. We discuss this more fully in chapter 2.

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