There's no place like home

Today is BADD (Blogging Against Disablism Day), engineered by Diary of a Goldfish. Check out her site for links to the more than 100 bloggers who signed up to contribute to the discussion today.



Everyone knows about the on-going "health care crisis." But what everyone may not know is that for many disabled people this increases the threat of institutionalization because of the structure of private medical insurance and Medicare/Medicaid assistance today. In fact, despite the 1999 Olmstead ruling that unnecessary institutionalization violates their rights under Title II of the ADA, it's estimated that over 250,000 disabled people wish to move out of nursing homes but remain trapped.

In February of this year, the Money Follows the Person initiative was part of an Omnibus Budget bill signed into federal law. Though it's designed to allow people to take their Medicaid funding with them when they move out of nursing homes and other institutions, it's a five-year plan to begin implementation next year and will only cover 40 states. It's a victory against the powerful nursing home lobby, but the big win would be passage of MiCASSA.

Next year is too late for many disabled people confronted by a loss of their freedom now. In West Virginia, long-term vent users are shipped to Ohio as part of a sneaky state policy to save money.

In Florida, the state program for funding home-based health care (a way to comply with the Olmstead decision) has a waiting list years -- perhaps decades -- long. With rising healthcare costs far outpacing funding for the Florida program, over 3,000 people are literally waiting for the 828 people enrolled in the program to die before they have hope of receiving care in their homes. Or they're dying while they wait.

In North Dakota, Nodakwheeler Mark Boatman is about to move 850 miles from family and friends because Montana will free him from the nursing home by covering home-based care if he resides there.

Harriet McBryde Johnson calls the institutions where disabled people are housed the "disability gulag" (better yet, read her book):

The nursing home is the gulag's face for people like Dave, me and Grandmother. That is where the imperatives of Medicaid financing drive us, sometimes facilitated by hospital discharge planners, ''continuum of care'' contracts or social-service workers whose job is to ''protect vulnerable adults.'' Pushed by other financing mechanisms, people with cognitive disabilities land in ''state schools,'' and the psychiatrically uncured and chronic are Ping-Ponged in and out of hospitals or mired in board-and-care homes. For all these groups, the disability rights critique identified a common structure that needlessly steals away liberty as the price of care.

My own story of narrowly avoiding involuntary shipment from the rehab hospital to a nursing home of my private insurance company's choice can't be considered a total victory under the circumstances presented above. I'm not locked away yet. That's the most honest way to explain how it's all resolved.