(Editor's note--This article is reprinted from "Long Term Care News and Views", published by Planning for Elders in the Central City, Volume 17, Issue 2, February 2012)
On June 22, 1999, the US Supreme Court affirmed the right of individuals with disabilities to live in the community in the historic Olmstead decision. The court found that "the unjustified isolation of individuals with disabilities is properly regarded as discrimination based on disability". The court further ruled that the Americans with Disabilities Act may require states to provide community-based services rather than institutional placements for individuals with disabilities.
I moved out of a skilled nursing facility on October 2, 1982, so am coming up on my 30th anniversary of moving to Berkeley and living independently. In this same year, my 18 year old niece is moving here to attend college and learn to live independently.
Jade and I share the same congenital disability and virtually the same threats to our independence. We are dependent on lean government programs that require that we be poor in order to access them. Any exceptions to these poverty requirements are few and convoluted. I know this as a longtime disability benefits advocate. Jade has seen more ready access to an equal and integrated education than I did, and she has more capable, aware, and attentive parents than my own who have advocated for her needs. These factors have seated her well with an optimistic academic, social, and even vocational future despite ongoing disability-specific health concerns.
Still, Jade and I, members of two generations, plus Jade's grandparents are all currently in precarious situations facing the threat of institutionalization at the hands of state and local governments on which we depend for housing subsidies, healthcare and personal assistance services, accessible transportation, accommodations in school, and training to meet vocational goals. It's a delicate network of services that are more often than not done to us and not by us. We are the cash cows to multiple industries that rely on our dependency. Our reward for compliance is our survival, but not necessarily independence. We keep fighting for laws, asking for permission to live and possibly pursue happiness. It feels more like a hamster wheel than a movement. I am as worried about Jade now, after 30 years of work by people with disabilities, as i was and am for myself. A lot and very little has changed.
These are the things on my mind when thinking about Olmstead.
If you're a senior or a person with a disability having trouble navigating the complex web of home and community-based support services you need to keep living at home, Consumer Rights for Community Living (CRCL) is her to help! If you're not sure how to get the services you need, if you aren't sure what your rights are, or if you need help to resolve a grievance, call us at 415-703-0286