< Previous | Contents | Next >

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

3 Better choices, stronger voices

1 Better information, communication and advocacy are central to making any changes and putting the principles into practice. If we are to include people with learning disabilities fully in our communities, they need to have accurate information so they can make informed choices and decisions about their lives. People with learning disabilities need to be able to have their say. They need to be supported if necessary to make their point. During the review people with learning disabilities and their families made it clear that they wanted to be consulted more and have a greater say in decisions about the support they need to live a full life.

Information for people, professionals and planners

2 Many people using services and their families told us they had trouble finding out what social work, health or other services were available. Families from ethnic-minority backgrounds said there was a serious lack of information available in community languages. In our survey of users and carers quite a few parents said that the only way to find things out was by ‘constantly hassling’ professionals. People described this process as a ‘fight’ or a ‘battle’.

3 Family carers often described other parents as the best source of information and said that professionals did not always take time to listen to or speak to their sons or daughters.

4 Other people said that professionals themselves lacked information and knowledge about learning disabilities, and some professionals acknowledged to us that this was the case. Many primary care and social work staff said they did not have enough training about learning disabilities, and often did not work with enough people with learning disabilities or their families to develop the expertise they needed. Many said they did not always know about the full range of services that might be available in their own area, especially if they were provided by agencies other than their own.

5 The Scottish Executive is currently supporting a number of ideas to improve information for people with disabilities, carers and others. However, many of these ideas are still at an early stage. The Scottish Accessible Information Forum (SAIF) is being funded to co-ordinate a national strategy to make sure that all information is accessible to people with disabilities, and their carers. Already a new national disability information service ‘Update’ provides a service to agencies which deal directly with the public. The Social Work Information Review Group (SWIRG) made up of Cosla, the Association of Directors of Social Work, the Accounts Commission and the Scottish Executive is also carrying out a review of information needs for social work in Scotland. The Disability Rights Commission (DRC) will be active in Scotland from April 2000. Enquire, run by Children in Scotland, provides a national advice and information service for families and carers of children with special educational needs.

6 Services to carers will also be widely promoted through the recently launched Strategy for Carers in Scotland. By Spring 2000 the NHS Helpline will be extended to provide information on access to social care services and support for carers, as will NHS Direct when it comes on line.

7 You can already find information through web pages such as Scottish Health on the Web (SHOW) and the Health Education Board for Scotland’s website. Social care information will be available through the SHOW site as well as through the NHS Helpline and NHS Direct.

8 Helpful as these initiatives are, none of them provide the one-stop wide-ranging information about local learning disabilities and services that families and carers actually want. There is a danger their needs will be overlooked.

9 If those who make policies and planners are to provide the services people need, they have to gather better information about the numbers and needs of those with learning disabilities (and their carers) locally, and also crucially, about how well different service options work. As we said earlier, only three areas in Scotland could give us reasonably wide-ranging information about the numbers and needs of people with learning disabilities. Most appear to rely on prevalence data to plan services. This is surprising since we were told that all education authorities will know about all children with learning disabilities and children with more complex needs will be known to local child health services.

10 People with learning disabilities, their parents and families, professionals, policy-makers and planners all need reliable information of different kinds at different times.

People using services need to know:

• where to go and who to ask to get answers to their questions;
• about particular conditions and disabilities and their effects;
• how to get help and who makes decisions about this;
• how professionals carry out assessments and make decisions;
• what social, healthcare and other services and support are available locally, nationally and internationally;
• how to change or challenge professional decisions or complain if they are not happy with what is happening; and
• how to get in touch with other people and families with similar needs and problems.

11 Above all people need a service that is easy to find, easy to understand and where they do not feel passed from ‘pillar to post’. We believe people with learning disabilities, their families and carers need a specifically-targeted information service.

Recommendation 8 The Scottish Accessible Information Forum should consult local authorities, health boards and users and carers on how best to provide joint, one-stop, free and accessible local information services for people with learning disabilities, their families and carers. Information must also be available in community languages.

Professionals need to know:

• about the effects of learning disabilities on development and daily living or how to find out about this;
• about up-to-date research, policy and the best way to help people with learning disabilities and their families;
• about good practice and developments in other fields which can be used to care for people with learning disabilities, for example, in rehabilitation or palliative care services;
• where they can get the right advice and expertise so they can help families as best they can; and
• where to refer families if they cannot provide help directly.

12 Many professionals need better training before they qualify and after they qualify to improve their knowledge of learning disabilities. They also need access to up-to-date research and to know about local as well as national resources. Much of this could be provided by the Scottish Consortium for Learning Disability.

Planners need to know:

• how many people have learning disabilities, or more complex needs in their area;
• what the range of needs is likely to be;
• whether this is likely to change in future and why;
• how many people with learning disabilities currently use their services;
• how much services cost; and
• how well different service options work and what people think of them.

Planners should work with others, both within local authority departments and across agencies so that any information they gather can be shared.

13 Local authorities and health boards need to work together to improve and develop the information they currently have about the numbers and needs of people with learning disabilities and their families and carers. Setting up the local registers we refer to in chapter 2 will help this process.

Recommendation 9 The first PIP agreements should set out how local authorities, health boards and primary care trusts will set up and maintain local registers.

Communication

14 At least 50% of people with learning disabilities have significant communication problems with up to 80% having some communication difficulties³¹. People who find it hard to make their views known because their speech is impaired, or who use different ways of communicating, need skilled and regular help from speech and language therapists. Yet users and carers told us that it was very hard to get these services.

15 Communication is central to being included in society. People with learning disabilities and their families may need help to communicate their views and their knowledge. The starting point must be that professionals can communicate clearly and in ways that make it easy for people to understand them.

16 People with learning disabilities need time, help and sometimes independent advice and support to put across their views. People with more complex needs are most likely to have difficulty in expressing their views. Communication with them may mean a great deal of support is needed and may be very slow. More positive efforts may need to be made to involve them and their families. Professionals may need help from families and carers to make communication possible in many circumstances. Families and carers may need to make the time, and will sometimes need outside help, to make their communication with their family member as good as it can be.

17 Speech and language therapists are an important resource in helping to develop communication. They sometimes work with a clinical engineer to do this. Other professionals also contribute, such as educational and clinical psychologists, as well as art, music and drama therapists.

We were told:

18 Scottish Ministers in their response to the Riddell Committee³² suggested that the Scottish Executive would review with Cosla and relevant health agencies the use and effectiveness of current funding in relation to speech and language therapy for children. We believe that also needs to include adults.

Recommendation 10 The Scottish Executive’s review of the effectiveness of funding speech and language therapy for children should also include services for adults.

Advocacy

19 Many people with learning disabilities, their carers and professionals recognise that an independent person standing up for the person with a learning disability can help find the right solutions to very difficult problems. Although advocacy is now more widely available, our survey of users and carers found that it did not play a large part in people’s lives. This suggests that there is a significant gap in the range of support available.

20 Advocacy allows people to have a greater say in decisions which affect their lives. People with learning disabilities find it useful, and they enjoy the company and friendship that their advocates often offer. A user in our survey said:

The review found that very few people with learning disabilities have access to an advocate.

21 Research shows that people with complex needs are more at risk of a wide range of poor outcomes. These include:

• less choice about their lives;
• less involvement socially;
• fewer chances of employment;
• less active lifestyles; and
• greater health needs^{33, 34} .

They are most likely to have difficulty expressing their needs and as a result need more help.

22 National guidance on advocacy covers the types and benefits of advocacy and factors to consider in getting advocacy services started³⁵. The guidance is as relevant to improving the lives of people with learning disabilities as other care groups and the review recommends it to organisations which commission and plan services. The Scottish Executive has sponsored further work on commissioning and supporting independent advocacy services which it will issue in the near future³⁶.

23 Advocacy can take different forms. Many people with learning disabilities want to be able to speak up more for themselves. They would like to be trained to represent themselves or others. Citizen advocacy is when a committed person supports a person with a learning disability. Advocacy needs to be more widely available. We need to build towards a position where everyone who has complex needs or is particularly vulnerable has ready access to an advocate.

Recommendation 11 The Scottish Executive should continue to encourage the development of local independent advocacy services.

< Previous | Contents | Next >