4. Who should be involved in the review?
4.1 The second question the scoping study invited views about was: who should be involved in the review. This question was explored in the survey and interviews, and an analysis of the findings was then presented to attendees at both the workshops.
4.2 There was broad agreement among different stakeholders in relation to this question.
4.3 People thought that the review should be inclusive and gather views from ALL perspectives and there was a great deal of consensus about the types of individuals, groups or organisations who should be involved in the review. These were:
- People with learning disabilities and autism who have been subject to the 2003 Act: There was a general view that the experiences and views of these individuals should be at the heart of the review.
- Family carers (or 'Named Persons' or guardians): The perspectives of these individuals were also thought to be crucial, particularly in cases where there may be challenges in obtaining the views of the person they care for (due to communication difficulties).
- People with learning disabilities and autism who have NOT had direct experience of the 2003 Act: The point was made that the review needs to consider the views of all people with learning disabilities and autism since the current legislation - and any future legislation - has the potential to have an impact on them. This group would include those who are not in contact with any support services.
- Young people: People commented that the views of older people with learning disabilities may be influenced by their experiences of institutional care prior to the closure of long-stay hospitals. Younger people with learning disabilities today do not have these experiences, and most have always lived in their own communities. Their views about compulsory care and treatment may therefore be different to those of older people.
- Professionals with a role in the 2003 Act: This group includes: psychiatrists, mental health officers / social workers, independent advocacy workers, staff and members of the Mental Health Tribunal for Scotland, and representatives of the Mental Welfare Commission.
- Professional care and support providers: This group includes the full range of individuals involved in the planning, delivery and regulation of health, social care and support services for people with learning disabilities and autism. It includes people working in NHS, local authority, third sector and private sector care services.
- Other experts: These include academics and researchers, experts in law and human rights, individuals with knowledge and / or experience of legislative arrangements in other countries, and organisations that hold data or other information relevant to the review.
4.4 People talked about the importance of the review hearing from everyone. They thought it was crucial that the review consulted widely to ensure that the views it receives are truly representative of the wider learning disability and autism communities. In particular, it was suggested that the views of those who have campaigned for a change in the law in this area, while entirely valid, may not be representative of the views of all people, and particularly those with learning disabilities and autism who are most likely to be subject to the 2003 Act. Furthermore, the people most likely to be subject to the Act are also those who may have the greatest difficulties in making their views known - particularly where they have complex communication support needs.
4.5 Annex 3 contains a list of specific organisations participants suggested should be involved in the review.
4.6 Attendees at the workshops were asked to comment on the list given in paragraph 4.3 above. In general, there was consensus that these were the right groups of people to be involved in the review. However, further additional suggestions included:
- People who do not use speech as a means of communication: It was suggested that those who support these individuals would be able to provide assistance with communication.
- People from black and minority ethnic groups: This would include both those who have a learning disability or autism and their parents / carers.
- People with learning disabilities and autism who have had experience of the criminal justice system
- The general public.
4.7 Workshop participants made the following additional points:
- It is crucial that people with learning disabilities and autism are involved throughout the review - and their participation should be meaningful and not tokenistic.
- The population of people with learning disabilities and autism (and their families) in Scotland is a very diverse group of people. This diversity needs to be captured.
- There is a distinct group of people with autism who do not have a learning disability and these people should be consulted, whether or not they have had direct experience of the 2003 Act.
- Finding out about the experiences of people who have been affected by the 2003 Act (i.e. gathering qualitative evidence) is particularly important.
- The review should seek views from people living in both rural and urban areas.
- In obtaining the views of professional care providers, the emphasis should be on the views of those in 'front line roles'.
- The review should take stock towards the end of its work to determine whether any groups have been inadvertently excluded from participation, and then focus its attention on those groups.