We have managed for a long time without a formal organization, although, at least until recently, we have met regularly, and we have cranked out a newsletter to go along with the (almost monthly) meeting notices. We tend to have family members whose loved-ones are on the more severe end of the range of people with developmental disabilities, but everyone is welcome to attend our meetings and sign up for the newsletter.
When we started, we came up with a set of principles. We rarely refer to this document, but we adhere pretty closely to it. Here it is:
- People with developmental disabilities have diverse needs based on the nature and severity of their disabilities, their experiences, and family circumstances.
- For people with developmental disabilities who cannot speak for themselves, the best advocate is a parent, other family member, or close friend who is aware of the individual’s needs and cares about the welfare of that individual.
- To meet the long-term needs of people with developmental disabilities, a full range of services, programs, and living arrangements, designed to meet their unique needs, must be available and the availability communicated to people with DD and their families.
- To ensure the availability and delivery of appropriate services to people with developmental disabilities while protecting the rights and preserving the dignity of those individuals.
- To provide information so that people with developmental disabilities and their families or friends can advocate for themselves to obtain the services they need.
- To communicate with public officials charged with the responsibility for providing services and protecting the rights of the developmentally disabled and to ensure the accountability of public agencies to people with developmental disabilities and the public.
This year, we have not met as often as we have in past years, but I have been sending out more information by e-mail with frequent updates on issues affecting families and people with disabilities. Friends of DD has joined ddAdvocates of Michigan, an Internet-based network of community organizations and family members. The purpose of ddAdvocates is to provide information to families and friends and apprise them of opportunities to comment on local, state, and national policies affecting people with developmental disabilities.
Friends of DD
Ann Arbor, MI