[Excerpt] Social policy is rarely made by the people whose lives depend on it. For that reason we often see legislation, programs and practices that make people with disabilities more dependent rather than more independent. In most countries, policies or lack of policies drive people who need help of others in the activities of daily living into dependence on their families or exclude them from the life of the community by forcing them to live in segregated residential facilities or to stay in their parental homes beyond the customary age.
The piece of policy suggested here is different, because it is written by individuals who themselves depend on the daily assistance by other persons. The European Center for Excellence in Personal Assistance, ECEPA (www.ecepa.org) consists of eight partner organizations (1) in eight European countries that are run and controlled by persons with disabilities and specialize in the provision of and advocacy for personal assistance services for persons with extensive disabilities. Using our combined personal experience with personal assistance policies a list of features was compiled for a policy that is to promote self-determination and full citizenship for persons with extensive disabilities.