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

2 The way ahead

1 Local authorities and health boards have made progress on joint planning across boundaries since the Community Care Act was introduced²⁴. Local authorities have lead responsibility for planning community care and for producing children’s services plans. More users and carers have been involved in planning community care. ‘Modernising Community Care’²⁵ promotes and strengthens joint planning and joint working at a local level. But strategies and plans have no value in themselves. Better information, communication and effective collaboration are essential to achieve our medium and longer-term aims.

2 Chapters 3 and 6 look at the need for better information, communication and working together. Chapters 4 and 5 aim to change dramatically where people stay and how they spend their days. In this chapter we recommend another seven important developments to improve the future for people with learning disabilities.

• Firstly, we need a clear focus within local authority and health planning systems on agencies working together to develop services for people with learning disabilities. This will include a requirement for them to produce ‘partnership in practice’ agreements. Local authorities should take responsibility for all non-health-related needs of people with learning disabilities, their families and carers. Health boards must make sure they provide an effective health service for people with learning disabilities.
• Secondly, we need to set up local area co-ordinators to improve local services.
• Thirdly, we need longer-term planning to support people with learning disabilities, and ‘personal life plans’ for those people with learning disabilities who want them.
• Fourthly, we need a ‘change fund’ to help local authorities move quickly from the present position towards our vision for people with learning disabilities.
• Fifthly, we need to strengthen people’s entitlement to direct payments.
• Sixthly, we need to set up a Scottish Consortium for Learning Disability.
• Finally, we need to develop a Scottish service network for autistic spectrum disorders.

Partnership in practice

3 To make sure this happens consistently throughout Scotland we propose that local authorities, health boards and primary care trusts should prepare ‘partnership in practice’ (PIP) agreements for learning disability services in their areas. The Scottish Executive should see the first agreements by 1 June 2001 and these should cover services for children and adults for a three-year period. These agreements should form part of, and not be on top of, the community care, children’s and health planning processes (such as health improvement plans (HIPs), trust implementation plans (TIPs), local health care co-operative plans and individual practice plans). The PIP should draw together the information that is already in existing plans to make sure all the agencies involved in planning services for adults and children with learning disabilities can come to an agreement. Part of a local PIP should be a section for promoting health linked to local and national health promotion strategies.

4 Though the areas in Scotland to be covered by each PIP should be agreed locally, we recommend that generally a PIP is developed for each local authority area or group of local authorities working together. We expect the important contribution currently made by the voluntary sector in providing services to be a central consideration and we expect these agreements to be developed by consulting users and carers. We set out a number of the main elements which should be included in the next few pages.

Assessing needs and planning

5 The agreement should include needs assessment covering children and adults with learning disabilities. The agreement should look specifically at:

• support for families and carers;
• physical disabilities and sensory impairment;
• mental health;
• profound and multiple disability;
• challenging behaviour;
• offending behaviour;
• autistic spectrum disorders;
• ethnic-minority issues;
• children who are changing schools;
• young people who plan to leave school and will need adult services;
• ageing; and
• the needs of people with ‘life-limiting conditions’ and those with palliative care needs.

6 The agreement should outline the plans for developing and commissioning accommodation and social support in line with our recommendations in this review. It should map current services and include a plan for providing accommodation in the community and support for people with learning disabilities living with their families, and for their families. The first PIP agreement should include plans for setting up and maintaining a local register of adults and children with learning disabilities. We expect registers to contain details of people who:

• currently receive services;
• have been assessed;and
• may need services in the future and want to be on the register.

7 We need to have a range of services in place to meet the needs of people with learning disabilities, especially those with complex needs. In particular, health boards, trusts and local authorities should make sure that:

• adults and children with learning disabilities have access to the full range of general health and social services;
• adults and children with learning disabilities can benefit from specialist health and social care services, including hospital and residential services, when this is in their best interests;
• appropriate support, training and education is provided to staff working in primary care and other general health and social care settings; and
• services for people with learning disabilities are co-ordinated locally including those with complex needs.

8 Health boards should have health promotion strategies which look at the needs of people with learning disabilities and their families. Positive health includes many of the ideas in this review — fulfilling potential, good relationships, support for families and carers and so on.

9 Local psychiatric services and learning disability services should agree arrangements for working with, providing advice to, and referring clients between services. In particular this should focus on the needs of people:

• with mild learning disabilities;
• with a dual diagnosis;
• who are experiencing problems in adolescence or old age; and
• who have dementia at an early age.

10 Health boards and trusts still have important responsibilities for people with learning disabilities and their families. They must make sure they provide as full a health service for people with learning disabilities as for anyone else. They should provide a small number of both assessment and treatment places for people with complex needs and for people who are detained in hospitals. There should be agreed ways of working with local authority social work departments and primary care colleagues on placing people in and releasing them from hospitals.

11 The agreement should include advocacy and other measures which place people who use services and carers at the centre of the decision-making process.

12 Local authorities should have the main responsibility for all non health related needs of people with learning disabilities and their families. This includes providing accommodation, education, social care and support, day services, employment, leisure and recreation, transport, information and communication.

13 Local authorities have always had responsibility in this field under their social work role. Many are now developing the broader approaches described above which help promote social inclusion. For long-stay patients who have left hospital, as for others, accommodation and social support should be the responsibility of local authorities.

14 Many people with learning disabilities have conditions which specialists are very familiar with, but these are all too often neglected if there is no specialist involved. To neglect special health needs is as much a failure to put services at the centre of people’s lives as to neglect the need for friendships.

15 Local authority and health boards must make sure all professionals work together, whatever agency they work in and that in future they use specialist medical, nursing, paramedical and social care professional skills to the best advantage.

Human resource strategies

16 Local authorities and health boards will need to put human resource strategies into place so plans can be put into practice effectively. Many of the developments we outline here or later, such as clarifying responsibilities, appointing local area co-ordinators and plans for closing long-stay hospitals will all affect staff. The changes which will need to be carried out as a result of this review can only be put in place properly if local authorities and health boards look at the significant training and retraining needs of front-line staff. Nurses currently working in long-stay hospitals are one priority group; support and residential care workers are another.

17 The ‘partnership in practice’ agreement should include a human resource strategy which builds on the principles of lifelong learning as set out in ‘Learning Together — Lifelong Learning Strategy of the NHS in Scotland’. This says that staff can expect support from their employer in helping them keep up to date and get more skilled.

18 The ‘partnership in practice’ agreement should include an outline of:

• the human resource issues involved;
• whether any of the plans mean that the principles of TUPE should be used; and
• how the agencies involved plan to work together to put an effective strategy in place.

Recommendation 1 Each local authority or group of authorities and health boards should draw up a ‘partnership in practice’ agreement by 1 June 2001.

Co-ordinating local areas

19 We looked at the way services were developing in other countries and were particularly interested in an idea from Western Australia. This looked at supporting people to live in their own communities. Local area co-ordination in Western Australia is an approach driven by the needs of people and is designed around each person. Local area co-ordinators provide funding directly to the customer to buy what they need, rather than using services from an agency paid for using a block grant.

20 In chapter 3 we refer to the difficulties people with learning disabilities and their carers have in getting information about what services are available. Many people also said that professionals displayed a lack of knowledge about learning disabilities. We believe that a specialist worker dedicated to working with a small number of people using services in one area would help people and their families through the current maze of systems.

21 Local area co-ordinators could have a number of different professional backgrounds. Each local area co-ordinator will support about 50 people so that they know them personally and can respond to individual needs. The precise number of people to be supported will be for local areas to decide. The co-ordinator’s role is on many levels (individual, family, agency, community), and includes many areas (housing, including supported accommodation, employment, health, education, respite and so on). They will co-ordinate services and provide information, family support and funding to individuals and their families. We think the local area co-ordinators may be best placed within local health care co-operatives. In some areas they may need to work with more than one co-operative.

22 The local area co-ordinators’ main task will be to make sure that other services are available which meet people’s needs. They will:

• help people who use services decide what their needs are, and make plans for the future;
• with a budget, provide funding directly to people who use services, and try to get hold of new funding where there are gaps in services;
• provide information and help people get advocacy services;
• build relationships with people with disabilities and their families;
• support individuals and families to develop and maintain strong networks;
• help people who use services to co-ordinate the way support and services are provided;
• work with other individuals and agencies to encourage people with disabilities to be included in society (for example, with the key workers to be set up by the Beattie Committee²⁶);
• make connections with members, groups and agencies from local communities;
• set joint aims for themselves, users and carers and monitor the quality and quantity of services provided to people with learning disabilities; and
• deal with complaints and any conflicts between people using services and their carers, families and professionals.

23 The co-ordinators will be responsible to a joint management committee made up of local authority, health and voluntary sector representatives as well as local users and carers. They will send regular reports to their joint management committee, who will also help to sort out any complaints. The exact nature of the responsibilities of local co-ordinators will be decided by the joint management committees of the areas they serve.

24 Local area co-ordinators have an important role in carrying out assessments and overseeing how learning disability services are co-ordinated.

25 Helping people with learning disabilities to lead full lives means better assessment of their social and healthcare needs. This should include what a person wants, what strengths, skills, problems and needs the person has, and what they need to realise their goals.

Recommendation 2 Health boards and local authorities should agree to appoint local area co-ordinators for learning disabilities from current resources used for managing care and co-ordinating services. Initial training for putting local area co-ordinators in place will begin in Autumn 2001.

A personal life plan

26 This section identifies the need for better longer-term planning for people with learning disabilities across the many services and types of support available. Any assessments for community care, health or children’s services must have clear outcomes. From the point of the Future Needs Assessment onwards and for all adults, we suggest that this takes the form of a new ‘personal life plan’. This plan would be for everyone who has a learning disability and wants a life plan. The plan should describe how the person, his or her family and professionals, will work together to help that person lead a fuller life. Brokerage services should be part of what is offered. This is where the person with a learning disability has someone to act as a go-between for them to get what is needed. These have led to more person-centred outcomes especially for people who have not managed to get settled by using more traditional services. They can be a cost-effective way to break away from traditional methods.

27 The local area co-ordinator will be responsible for making sure that each person who wants to, has the opportunity to develop a life plan. The co-ordinator should write down the life plan and each person, their carer and their advocate or representative should have a copy. This plan will replace the existing community care assessment. Co-ordinators should:

• find out whether other people are visiting the person, what they are doing and whether they can use the same information to do an assessment together;
• tell the person that they are carrying out an assessment, what they will do and how long it will take;
• take account of language needs and cultural practices;
• tell the person what kinds of decisions depend on the assessment and what might happen; and
• at the end of an assessment, tell the person, and their family or carers if appropriate, what happens next.

28 The life plan will include healthcare needs including dental, ophthalmic, pharmaceutical, hearing, communication and physiotherapy needs as well as any other special support. It will set out the person’s assessed care needs including:

• short breaks for the person or their carer;
• meaningful work or other opportunities during the day;
• further education;
• housing and transport needs; and
• how each of these should be met.

29 Plans for children drawn up at the time of Future Needs Assessment must link to any other assessment or Record of Needs. There will be a regular review of the life plan so that the family can get more involved. Everyone who signs up for the plan will be able to ask for a review whenever it seems necessary. We suggest a yearly detailed review of the life plan for people with more complex needs living at home, and those in long-stay hospitals. This will allow the co-ordinator to plan future care in a non-hospital based environment.

30 Above all it is important that a person with a learning disability, their family or carer should not only feel involved in, but also own the plan. The plan will focus on the person. It will spell out their wishes and preferences. The plan must concentrate on how to build on their strengths, to develop them as individuals and to help them lead active and fulfilling lives. Wherever possible plans should spell out how the person with a learning disability can actively contribute to the community. It should look at what is in the best interests of the person with a learning disability in a very thorough way focusing on needs and what is available.

Recommendation 3 Everyone with a learning disability who wants to, should be able to have a ‘personal life plan’. (Recommendation 26 builds on this.)

A change fund

31 We recognise that local authorities can do much more to improve care and support for people with learning disabilities, including where people stay and how they spend their days. They can only partly achieve this by using existing resources more effectively and they will need more money.

32 Hospitals, care homes and day care serve about 17,000 people, 2,450²⁷ in hospitals and 14,300²⁸ in social care. So, the scale of change is huge. We believe agencies will need financial help to manage this change.

33 Bridging finance is one of the methods that has been used to bring about change in the NHS. It has provided over £150 million of help towards the cost of setting up new services while running down the old ones. There are no similar facilities to support change in social care services at the moment.

34 We believe people who use services and their carers will welcome the new directions proposed but may have concerns about how the changes will affect them in the short term. Experience suggests that people who use existing services will worry about change in case they lose essential support without anything being put in its place. They may need time to see for themselves the benefits of a new and very different set of services. Changing the patterns of care will mean taking these anxieties into account.

35 Local authorities, for their own services and those they commission from (mostly) the voluntary sector, will not be able to manage and pay for old and new services at the same time. They will need help with the costs of creating new services while keeping the old ones going until it is appropriate to close them down. Funding is also needed to re-direct existing services, develop new ones and to pay for training to improve the skills of staff.

36 Alongside that we have recognised the need to invest in certain important areas such as short-term breaks or advocacy if people with learning disabilities are to be properly supported in the community. We see a national ‘change fund’ as the way of helping with this and developing services. We would want to use the ‘change fund’ effectively and make sure it is linked to developments outlined in ‘partnership in practice’ agreements.

Recommendation 4 The Scottish Executive should set up a ‘change fund’ to help local authorities put in place the recommendations in this review.

Direct payments

37 Since 1997, local authorities have been able to give money directly to people to buy the help they need (if they want and are able to manage the money effectively)²⁹. This arrangement is called a direct payment. Not many people with learning disabilities have these at the moment. Eleven social work departments have schemes - some are quite new and running as test schemes.

38 Some people and their families or carers do not want the extra responsibility of arranging, paying for and managing services directly. They feel they do not have the knowledge or skills to do that. On the other hand, many are very keen to take more control of their affairs, sometimes with help. We think direct payments should be available to all those who want them. This includes people with complex needs who may need the support of an advocate to give their views.

39 Despite the small numbers so far, there are some very powerful examples of people getting better focused, more personal and newer services.

40 It is clear that direct payments could play a far bigger role in the future. They can be for one-off payments which would tend to be small but prevent problems by providing a short break or an aid. They could also buy longer-term care services. We need to make sure they are regularly reviewed so that they meet people’s changing needs. They could deliver quicker and better outcomes for people’s problems. Most importantly, they give people greater control over their care.

Recommendation 5 By 2003, anyone who wants direct payments should be able to have them, and local authorities should be included in the list of possible providers.

A Scottish Consortium for Learning Disability

41 In the next few chapters we identify the need for:

• developing advocacy services further;
• appropriate training and support to staff and agencies who work with people with learning disabilities;
• the public to be more aware of learning disabilities; and
• people with learning disabilities to be much more active in the communities in which they live.

42 We considered whether existing organisations could take forward this change alone and decided that we need to create a new organisation to support them. We call this the Scottish Consortium for Learning Disability.

43 The main purpose of the centre is to provide a Scotland-wide resource to help the general public and professional staff understand learning disabilities. The centre should support users, carers and agencies to achieve better outcomes. People with learning disabilities, their families and carers will be members of the joint management committee alongside professionals and academics.

What the centre will be responsible for

44 The centre will offer the following services.

• Consultancy, training and advice to agencies, professionals, staff and others on putting in place the recommendations of this review.
• An advisory and matching service to support local authorities, health boards and others which help those whose needs are so specialised that they cannot be met locally.
• Partnerships with large regional or national enterprises to encourage employment opportunities beyond those provided by individual local authorities.
• High-quality educational materials for:

• people who use services and their carers to help them follow their goals;
• academic establishments and staff to raise the overall level of awareness and understanding about learning disabilities;
• training social care staff in agencies, who plan and provide services for those with learning disabilities; and
• joint training to share knowledge, understanding and values.

• A programme of public involvement that encourages people in the community to get to know and help people with learning disabilities so that they, too, can enjoy being active citizens.
• Links with national and international research centres to carry out or promote joint research into services for those with learning disabilities.
• Help local services develop new and different practice based on national and international research findings.

The centre will aim to develop advocacy services in local authorities and health boards.

The centre will work with other organisations and add to other recent national initiatives such as the Scottish Accessible Information Forum (SAIF) and the Disability Rights Commission (DRC). Enable, as the national organisation representing people with learning disabilities and their families, has already developed an information and advice service. We consider it essential that the centre uses their expertise in developing their services and also consults other organisations which have an interest in this area such as People First.

45 We expect that either the centre or Enable will maintain and extend the Scottish Executive website.

Recommendation 6 The Scottish Executive should set up a new Scottish Consortium for Learning Disability. This would offer advice, training and support to agencies, professionals, people with learning disabilities and parents to bring about the changes we have recommended in this review. The centre will also support the further development of advocacy services.

Scottish service network for autistic spectrum disorders

46 Professionals do not know enough about autism and Asperger’s syndrome. They do not recognise it as often as they should. Early and accurate diagnosis is essential to give people the right help and education to reduce the effect of their disability. Although many children in Scotland are diagnosed before they start school, far fewer people are diagnosed than the research suggests exists³⁰. The number of people identified varies widely in different areas as does the knowledge, skill and services. There are not enough facilities for assessing and diagnosing these conditions particularly for older children and adults and in smaller authorities and rural areas. Added to this we were also told that even when there is a diagnosis, services may not be available as no agency sees it as their responsibility to provide them.

47 Some areas have good locally-based services for children but not for adults and other areas have little access to specialist advice and support. The Yorkhill Centre for Autism provides a service for assessing and diagnosing children under 12, although they will provide advice and support to local services for older children. Health boards use this service in different ways.

48 Children of pre-school and primary-school age are usually supported in special schools and special units within mainstream schools and in local services for children and adults. Many services for children and adults with learning disability are not suitable for people with Asperger’s syndrome whose intellect may not be affected but who have great difficulty in communicating and relating to other people. Some children’s services have adapted their environment, routines or staffing levels to make the service ‘autism-friendly’. With the right advice and knowledge many others could follow this lead. We also need to see more specialist services for people with autism. Voluntary sector organisations specialising in autism provide informed and highly-valued support and services for people and their families.

49 To make support for people with an autistic spectrum disorder better, local and national priorities must be to:

• continue improving early diagnosis;
• give professionals in local services quick access to information, specialist knowledge, expertise and training;
• widen the range of local support and services available; and
• help people get specialist services quickly when they need them.

50 Looking at models of managed clinical networks in the health service, we recommend that those with an interest in this area come together to set up a national service network for children and adults with autistic spectrum disorders. The Scottish Society for Autism supported by the National Autistic Society should bring this group together. They should draw up a description of what the national network will do, and when local services should call on it for help. The PIPs should set out how local services will link into the national network. Health boards and local authorities should also identify a named professional within their service who will be responsible for improving local services for people with autism and for linking local services to the national network. This may be a local area co-ordinator.

51 Local areas should develop levels of service, such as child care, education, short breaks for carers and social supports based on their best estimate of the number of people with autistic spectrum disorder in their area. This estimate should draw on local authority education statistics, research and other information about how many people with an autistic spectrum disorder might be expected in a given population. Health boards and NHS trusts should make sure that GPs, health visitors, school nurses and relevant social services and pre-school staff know about and are trained to use current screening and assessment tools such as the Checklist for Autism in Toddlers (CHAT). Local PIPs should include proposals for how local authorities and their partners will meet the needs of people with an autistic spectrum disorder in the area, and cover mainstream and specialist services. Agencies should find out how much training front-line staff in their services will need to improve their awareness and understanding of the needs of people with an autistic spectrum disorder. They should decide how to deliver the training needed to relevant staff by 2003 and ask the Scottish Consortium for Learning Disability to help them with this.

Recommendation 7 The Scottish Society for Autism by working with the National Autistic Society and health boards and local authorities should develop a national network for people with an autistic spectrum disorder.

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