One out of every five residents in Colorado nursing homes wants out, an analysis of state and federal records shows.
But a shortage of places for the disabled to live outside a nursing home and regulations that critics say make it hard to qualify for home services mean many who want out continue to receive expensive nursing care.
"Long-term care in general is costing the state more and more each year, just as more people need long-term care services and the cost of care continues to increase," said Tim Cortez, who was hired by the state in June to reform long-term care with the goals of serving more people and saving money.
In 1999, the U.S. Supreme Court said people who can live independently have that right. But Colorado doesn't have the resources or infrastructure to assist all the people who want out.
Many are people like Cliff Seigneur.
Seigneur was an assistant state attorney general, but his multiple sclerosis eventually made it impossible for him to work. He wound up in a Denver nursing home at age 48.
"I don't want to be brought out of this place in a body bag," Seigneur said.
OLYMPIA, WASHINGTON-- [Excerpt] Debb Snyder's slender lifeline to independent living is her government-paid prescription for Klonopin, the expensive anti-seizure drug that controls her grand mal seizures and allows her to remain in her small apartment off St. Johns Road. She's been taking 0.5 milligrams of the drug six times daily for 20 years.
That's why it was intensely personal for Snyder when she saw the list of cuts to Medicaid programs the Washington Department of Social and Health Services is preparing to implement between Jan. 1 and March 1 to achieve its share of 6.27 percent across-the-board cuts in state agency budgets.
The department will eliminate coverage for outpatient prescription drugs provided by retail pharmacies to an estimated 277,000 clients, effective March 1. As a "discretionary" program under Medicaid, the prescription drug program is one the state has the option to discontinue while still maintaining its partnership with the federal government in providing health coverage to the poorest of the poor under Medicaid.
Drugs administered in a hospital, doctor's office or long-term care setting won't be affected by the cut.
Today 300 ADAPT activists called on Speaker Nancy Pelosi to liberate women with disabilities from institutions by supporting the Community Choice Act. We covered all the entrances at 1st and Constitution NW in DC where Pelosi was receiving the Alice Paul award at a luncheon. Alice Paul was a first wave feminist leader and the annual award is sponsored by the Sewell Belmont House.
68.4 % of all nursing home residents are women. You can bet they would rather be in their own homes with services and supports. Most are seniors and women with disabilities and definitely not rich. These women are not exactly on Speaker Pelosi's high priority list.
Sadly these women are also not high on the priority list of most feminists. All the women in ADAPT and many women with disabilities around the country were stoked about today's action. Most of us are feminists and would love to build links to a women's movement that, for the most part, ignores us.
What's the story here? Women with disabilities are among the most excluded and oppressed in the country. One would think the women's movement would be all over us. Not.
Instead it is often conservatives who attempt to build political alliances with us. The ADA was signed by President Bush 1 and President Bush 2 implemented and funded Money Follows the Person to get people with disabilities out of institutions, receiving services and supports in our own homes.
We still cannot get Speaker Pelosi to support the Community Choice Act and mainstream women's groups keep us off their agendas.
When will the women's and progressive movements welcome all excluded groups?
In the meantime...the women of ADAPT will continue to come out and rock and roll...until we Free Our People from nursing homes and other institutions.
If Alice Paul were still alive, she would have been in the streets with ADAPT.
As I write this, 300 ADAPTERS are blocking 3 entrances to the HUD building in Washington, DC. What's up with that?
These are folks that live full lives and have better things to do with their time so why protest how federal housing dollars are spent?
There are still many in our society who want seniors and people with disabilities locked away in nursing homes and other institutions..out of sight out of mind. That's especially true if you are a senior or person with a disability who has a low income....and with 1 in 7 Americans living in poverty....well do the math. Tens of thousands of seniors and people with disabilities need affordable, integrated, accessible housing.
Yet 20 years after the ADA was signed into law, HUD still spends our tax dollars so that seniors and people with disabilities are forced to live ....and too often die...in institutions.
ADAPTers can launch a great chant, can block the doors and chain themselves to HUD with a flair...yet also among us are top policy wonks in the housing arena. We want to work with HUD Secretary Donovan to implement a solution to this housing crisis.
What is so scary or hard about that?
What do we want? Affordable, accessible, integrated housing. When do we want it? NOW
Right now 300 plus ADAPTers are blocking streets around the White House. ADAPT was headed to the White House to tell President Obama to live up to his campaign promise to end the institutional bias and support the Community Choice Act. Sadly, the Obama White House is limiting the right to protest. No more than 25 people can protest at the WH without a permit. No other administration has done this.
Can you help tell the Obama administration to meet with ADAPT and hear our demands?
Right now we need YOU to contact the White House at http://bit.ly/aX7aab! The action is nationwide, help us get the President's attention. YOU can make it happen!
Why is giving people the right to live in their own homes and communities so difficult? Why will the federal government pay for people to live in a nursing home but not in the community when the aggregate costs are less? Sane policy in this arena is not rocket science.
Have you ever heard anyone say "I can't wait until I age enough to live in a nursing home?" No one chooses such a horrid, constricted life if they can live in the community with services and supports.
It is past time for politicians to say no to all those dollars from the nursing homes and end the institutional bias.
What if your landlord decided if you could go out...and when, where and with whom?
What if someone made it their business to decide that you could not have anyone spend the night, and even though you were 43 years old?
What if you could only have alcohol on special occasions, and only if you were "good"?
What if there were no guarantee you and your spouse, let alone a friend, could live together?
What if your entire living space was 10 by 12 feet and you had to share it with a roommate your landlord picked for you?
What if they sedated you because you were "uncooperative"?
And that said it was all "for your own good"?
That's life in a nursing home or institution.
What if you could have a REAL CHOICE?
That's what the Community Choice Act (CCA) would do. ADAPT is fighting to give people the opportunity to decide where they live and receive long term services and supports. People cold choose to stay in their own homes rather than be forced into nursing homes or institutions.
ADAPT Activists to Storm Washington DC; Vow to Fight State Cuts to Medicaid Home Services
Fighting dangerous state Medicaid budget cuts across the country, the national grassroots disability rights action group ADAPT is planning direct actions at several venues in Washington, DC between September 19 to 22 to demand that states save Medicaid-funded home and community based services. These services support low income people with disabilities and who are aging to stay in their own homes instead of being forced into nursing facilities to obtain services. During this critical election season, ADAPT plans to make it clear that saving Medicaid services is key to winning the disability vote.
"During this time of fiscal panic, governors are looking for ways to save dollars," notes Mike Ervin of Chicago ADAPT. "Hundreds of us are coming to Washington because Congress and the White House need to step up efforts to protect Medicaid community services in the states. I use home services and without someone to assist me, I'd be waiting on some nursing home aide to change me or feed me whenever she was done with the other fifty people living in the same facility. With home services, I am in charge of my life."
Current Medicaid law mandates that states use their Medicaid programs to pay for nursing homes, but the law does not equally mandate that states pay for the same services in a person's own home. Today, most states recognize that providing home and community based services (HCBS) is a less expensive solution than institutions. However, in these tight fiscal times, Medicaid dollars funding "optional" services like HCBS are first on the budget chopping block, while the mandatory institutional budgets are rarely touched. ADAPT's current "Defending Our Freedom" campaign is a direct response to states' attacks against HCBS, services that allow people with disabilities to take care of themselves, raise their families and be part of society.
"Without the home services funded by Medicaid, hundreds, if not thousands, of people with disabilities in my state would be forced to live in nursing homes or institutions," said Joe Stramondo of Michigan ADAPT. "Some states are virtually on the edge of bankruptcy. It makes no sense to spend extra dollars on institutions when those same dollars could fund more people with disabilities to live in the communities of our choice."
Defending Our Freedom is a three-prong national campaign to organize the disability community to:
• Demand that the Obama administration fulfill its duty to aggressively protect the civil rights of disabled Americans and enforce the Americans with Disabilities Act/Olmstead decision;
• File complaints with the Health and Human Services Office of Civil Rights and the U.S. Department of Justice that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced as well as complaints that document the state policies and budget cuts that violate our rights;
• Document the disability community’s efforts to fight back against state cuts so that we can learn from each other’s efforts, rally others to join our fight, and hold public officials accountable when they do not support our freedom.
This site is organized by the national disability rights grassroots community ADAPT. For more information about ADAPT, please visit www.adapt.org. To submit photos (jpegs please!) and stories about your activism, please e-mail ADAPT at email@example.com. Anyone is welcome to submit material. Please limit your submissions to 250 words or less.