How is self-directed support developing globally?

Citizen Network is working with the European SKILLS project to identify the extent to which self-directed support is being adopted in different countries around the world.

Many people with disabilities, older people and people with mental health problems remain in institutions or in institutional services. It is still unusual for people and families to have the control they need to create the right kind of support for their own lives. Self-directed support or independent living are names for a way of organising support to people with disabilities that is organised so people can have the maximum level of control over their lives and can live as full and equal citizens. It first emerged in the 1960s when people such as Ed Roberts in Berkley, California demanded their right to take control of their own support arrangements. Now there are systems of self-directed support in many different countries around the world.

However progress has been slow. Different systems have developed in different countries and for different groups and most people with disabilities, especially older people and people with more complex needs or cognitive impairments are still excluded from the benefits of self-directed support.

Citizen Network believes it is time for people to come together from around the world to:

• Share their experiences and communicate more effectively about lessons learned
• Map the progress of self-directed support around the world, to see who is doing well and who is lagging behind
• Set standards for self-directed support based on the lived experience and expertise of people with disabilities
• Create a network of experts, activist and advocates who can help sustain the pressure for greater progress around the world

The first phase of this work is being done in partnership with the SKILLS Project, which is a European project with financial support from Erasmus+.

This project will help people develop skills in using, providing, educating and lobbying for self-directed support.

In particular it will produce:

• My Freedom of Choice – Accessible training and toolkit on self-directed support for people and families
• Supporting Citizenship – Training and toolkit for front-line staff working in the disability services
• Supporting Lifelong Learning Opportunities – Training and toolkit for staff working in Adult Education
• Leading the Way – Strategic planning and lobbying toolkit
• Self-Directed Support in Europe – A map and report outlining progress on self-directed support in Europe and globally

The partners in this European project are:

• KVPS – a Finnish development agency for people with intellectual disabilities – the lead agency
• EASPD -the European Association for Service providers on Disabilities
• Anffas – the leading community organisation and campaign body for people with intellectual disabilities in Italy
• in Control Scotland – a Scottish development agency for self-directed support
• Centre for Welfare Reform – a think-tank based in England

The project recently published a discussion paper offering: an overview on international progress, the lessons learned so far, common barriers faced and proposing an initial set of standards for self-directed support. This paper is for discussion and consultation and is available to read online and download as a pdf here.

If you want to discuss any of these ideas or want to make suggestions for improvements then please contact the author: Simon Duffy.

We are now seeking to identify people around the world who would like to help us map progress on self-directed support in their own country. We are looking for:

• People with disabilities or family members who know how the current system works
• Academics, researchers or policy leaders who are involved in self-directed support
• Professionals with a commitment to human rights and citizenship

If you would like to take part in this international research please fill in the questionnaire at: http://bit.ly/mapping-sds

Your answers will help us develop an atlas of self-directed support which will be published in draft form for discussion in 2018 and then revised for final publication in 2019.