July 31, 2006
The Dream of Living at Home
A look at some of the topics in Ragged Edge Online's libraries and archives.
"Every three minutes someone dies somewhere in an institution, kept there against their will," wrote Georgia activist Zen Garcia in Sept. 2001. Garcia was en route to San Francisco to join ADAPT in a week-long "action" -- to fight for change in federal policy: to let people live in their own homes, not nursing homes.
Ragged Edge's archives and libraries contain many articles about the disability rights movement's fight for the right for people to live at home rather than in nursing homes. Below are links to many of those articles.
In addition, ADAPT attorney Steve Gold maintains a website for news and updates about the federal changes that are occurring in the move toward in-home services. At the website, you can also subscribe to an email list to receive updates. Visit website.
"In every state today, it seems, budget cuts are reducing the money set aside for alternatives to institutionalization," Garcia wrote in 2005. "As many of us across the country struggle to manage the impact these cuts will make upon our lives, thousands of people returning from Iraq with lifelong disabilities will find themselves pressed by the system they just fought to defend.
"Here in Georgia 116 of us are fighting a proposed cap of the Independent Care Waiver Program. . . . Mad as hell -- and fighting for our lives
In 2005, an elderly woman living in an upscale assisted living development was told she would have to move to the development's nursing home because she needed an attendant. She sued. Read Retirement community sued for refusing to allow hiring of personal attendants, and its follow-up, SC Retirement Community Can No Longer Push Residents Into Nursing Home
In Sept., 2003, ADAPT activists from across the nation undertook a 14-day march from Philadelphia to Washington DC today to "demand an end to Medicaid's institutional bias that locks away Americans with disabilities."
Read Activists begin 144-mile march to "Free Our People"
In 2004, activists in Georgia organized a 106-mile march calling for in-home services. Read Crip Caravan, Rally Celebrate 5th Anniversary at Home of Olmstead Decision
In the fall of 2005, Illinois disability activists organized a '60's Style Freedom Ride to Tell Officials People 'Want to Live at Home'.
"Nobody wants to live in a nursing home" is a slogan you hear a lot in disability rights circles. For years, but especially in the decades following passage of the 1990 Americans with Disabilities Act, disability activists have fought for public policy changes to allow people to live in their own homes when they need services. ADAPT, which stands for American Disabled for Attendant Programs Today, has been the leader in the fight.
In 1998, Ragged Edge editor Mary Johnson wrote about bills ADAPT was pushing in Congress that would change federal Medicaid policy to allow that. Read The Choice that Nobody's Heard of.
The bills have been introduced every session of Congress -- but have never gained much headway. Watch the DimeNet Hot News Network for updates about the bill.
In 1999, the U.S. Supreme Court told states that "unneccessarily institutionalizing" people was illegal under the Americans with Disabilities Act. The ruling, known as the Olmstead ruling, has been used by disability activists to press the changes they can't get through Congress. But the nursing home industry has fought back -- getting states to implement the Supreme Court's integration ruling means fighting for nursing home dollars, wrote Mary Johnson in the May, 2000 issue of Ragged Edge. Read Bed Money.
Other stories on that same topic, in the same issue, include:
What states can offer now: States can offer home and community based services now -- if they want to.
Countering 'The Woodwork Effect If states make it easy for people to get Medicaid services at home, a lot of people will want those services, say bureaucrats. But it's not true that they can't make estimates. Here's why.
Stuck at the Nursing Home Door:Organized labor can't seem to get beyond the institutional model. Marta Russell reports on what's happening in California.
'Nurse Practice Acts' across the nation keep costs of in-home services unfairly high as well. Read Johnson's January 1999 story,
In Thrall to the Medical Model.
More stories:
Removing the nursing home stranglehold: Anybody on Medicaid can get into a nursing home; but not get in-home help. Why's that?
How Kansas got 'consumer control' into theblaw
OASIS and the 'Bath Aide' by Adrienne Rubin Barhydt.
Point of View: Peggy Hecker chose to use a nurse, and tells why.
The 'Care' Juggernaut: Some activists are wary of the current concern over the 'poor overburdened caregiver.'
Editorial: Where are the crips in the 'caregiving' debate?
Point of View: Cass Irvin talks about the way we see attendants.
And be sure to check out our earlier news archives on this or related topics -- or use our search feature to find more articles.
Posted on July 31, 2006