3. Early involvement

People who use services and carers must be involved at all stages of developing and delivering services

Autism Rights Group Highland (ARGH)

Autism Rights Group Highland (ARGH) was formally constituted on May 1st 2007 and has continued as a collective advocacy group. ARGH is a group run by and for autistic adults. As such all full members including the management committee are autistic.

Since being formed ARGH has continued to work to strengthen the voice of autistic adults within Highland. We have three main aims that we strive to adhere to, both within ARGH and in our everyday lives:

National Involvement Network (NIN)

The National Involvement Network is a loose group of people with learning disabilities who are supported by different organisations across Scotland. What group members have in common is that they want to have more say over the services they use. One of the biggest achievements they have made is a publication called the Charter for Involvement. This book shows clearly what kind of involvement people who use services want. The National Involvement Network has succeeded in getting a lot of provider organisations to sign up to this Charter.

Katrina Robertson / People First Parents’ Group

People First (Scotland) is the national self-advocacy organisation of people with learning difficulties. People First (Scotland) became a company in 1989 and we now have around 1000 members from across Scotland. We support local People First groups in the different areas of Scotland from the Borders up to the Highlands. People First is run by a Board of Directors elected from the members in the different areas, all of whom have learning difficulties. Members support each other in the groups to speak up, to gain confidence and to stand up for our rights.

The Good Life: Positive Attitudes Group

The Good Life: Positive Attitudes Group is a group of adults with learning disabilities whose work improves the lives of people like them.

Advocating Together. Dundee Independent Advocacy Service and Dundee City Council

When Dundee City Council decided it was important to get the views of people who used their learning disability services, they adopted a Citizen Leadership approach. They funded Advocating Together to employ five people with learning disabilities to consult with other people with learning disabilities, and find out what was most important to people, and what services would help them most. Advocating Together provided training for these five ‘SAY reps’, to give them the skills and information to do the job well.

Citizen Leadership VIP Partners

V.I.P.s is a citizen leadership project committed to improving the health and wellbeing of people with learning disability and autism spectrum disorder by encouraging them to speak up for themselves and others.

Scottish Dementia Working Group

The Scottish Dementia Working Group (SDWG) is an independent group that was set up by people with dementia. We are a friendly group run by, and for, people with dementia or a related condition. We meet to support each other and find ways to improve services and attitudes.
(Photo 1) The Working Group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia.
We do lots of things to improve services. We participate in forums, committees and conferences to change policy. We campaign to make dementia a high priority.

Aman: Citizen Leader

Aman is a young man who lives in Edinburgh. He has made a big impact on the people who have seen him and heard him.
Aman is a citizen leader. He is passionate about giving other people the chance to achieve their potential.
This is what Aman does, in his own words:

I change mindsets
I get involved
I educate professionals
I challenge systems and processes
I work for real partnership

In the last few years Aman has