Activists in DC to press Administration on in-home support

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May 15, 2001 — Hundreds of activists from around the U.S. are in the nation’s capitol for a week of actions to press the Bush administration to make good on promises made in January. Members of American Disabled for Attendant Programs Today — ADAPT — are pushing the president to make good on a Jan. 15 promise to issue an executive order implementing the Olmstead Supreme Court decision. “It’s been more than 90 days and the President still hasn’t kept his word to issue the order,” says ADAPT’s Mike Oxford. “It sure doesn’t feel swift to all the folks who continue to be trapped in nursing homes.” In June, 1999 the Supreme Court ruled in Olmstead that people must be given services in the “least restrictive” setting — in other words, say advocates, in their homes, not institutions. (For more on the Olmstead decision, go tohttp://www.accessiblesociety.org/topics/ada/olmsteadoverview.htm )

ADAPT is also pushing Bush to support MiCassa legislation, to be introduced soon, “that will finally eliminate the outdated institutional bias that continues to plague our Medicaid/Medicare funded long term care service and support system” so that “no American is ever again forced into a nursing home.” (Read more about MiCassa athttp://www.mcil.org/mcil/adapt/casa01.htm#sum)

“You don’t want to end up in a nursing home,” writes U.S. News and World Report Senior Writer Joseph P. Shapiro. In this week’s cover story, Shapiro writes that there are other options for older people than nursing homes. Shapiro says he had to focus his story on seniors, but he takes a look at in-home services in his story athttp://www.usnews.com/usnews/issue/010521/health/homes.htm

Other efforts to improve in-home services include the move to change Medicare’s “homebound” rule. A Congressional briefing will be held tomorrow (May 16) on the Homebound Clarification Act of 2001 (HR 1490) at 3:30 p.m. in Rm. 121 of the Cannon Bldg. Background on this rule, and on the grassroots effort to change it, is athttp://www.amendhomeboundpolicy.homestead.com/

The national print edition of today’s New York Times carried a photo of ADAPT demonstrators on page A16 — but the caption said nothing about ADAPT’s mission; only that the group was trying to get a meeting with HHS Secretary Tommy G. Thompson.

Daily reports of ADAPT’s actions in the capitol are available from the Memphis Center for Independent LIving’s Tim Wheat, athttp://www.mcil.org/mcil/adapt/adapt501/

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Olmstead complaints give picture of what’s happening

Note to readers: links to news articles may not work after a few weeks, as news media remove current stories to their archives. The link may take you to the archives section, where, for a fee, you can view the article.

Feb. 12, 2002 — A “Working Paper” posted on the publications page of the website of the Center for Health Care Strategies, Inc (http://www.chcs.org/publications/consumer.html ) looks at what’s been happening since the 1999 Olmstead Supreme Court decision.

The authors, with The George Washington University’s Center for Health Services Research and Policy, undertook “a rolling, point-in-time, descriptive study” of administrative complaints filed with the U. S. Dept. of Health and Human Services Office for Civil Rights, based on the Olmstead ruling that services had to be provided in the “most integrated setting.” The 334 complaints they looked at were filed between 1996 and mid-2001.

Although most of the complaints were filed by people who had already been institutionalized, 30 percent from people who were currently not in institutions but who felt they were “at risk for what they at least considered medically unjustified institutionalization.” Many of these complaints were filed on behalf of children and adolescents.

Those who filed complaints but were not in institutions “were living with families but considered themselves to be in danger of medically unjustified institutionalization in the absence of assistance.” Most of the complaints came from people in nursing homes, the study showed. Only 30 percent had been filed by people in psychiatric institutions (which was where Lois Curtis and Elaine Wilson were when they filed their lawsuit that led to the Olmsteaddecision.)

“This is a nationwide problem; the complaints are from all regions of the country,” say the authors, who add that the complaints “offer invaluable insight into the extent of the long-term care problem in the U.S. among individuals who believe that they are experiencing or are at risk for medically unjustifiable institutionalization.”

“An Analysis of Olmstead Complaints: Implications for Policy and Long-Term Planning,” conducted by Sara Rosenbaum, Joel Teitelbaum, and Alexandra Stewart, was funded by The Robert Wood Johnson Foundation’s Medicaid Managed Care Program. The document is available from the CHCS website only as 417 K PDF file. If you can handle PDF files, go tohttp://www.chcs.org/publications/pdf/cas/olmsteadcomplaints.pdf

Those who cannot access PDF files and need a text-only version can go tohttp://www.google.com and put the name of this URL into their searchbox: http://www.chcs.org/publications/pdf/cas/olmsteadcomplaints.pdf — Click the “search” button and Google will give you an option of viewing the file as an html text file.

The National Conference of State Legislatures has what it calls a “work in progress” report on “The States’ Response To The Olmstead Decision” online at http://www.ncsl.org/programs/health/forum/olmsreport.htm — clicking on this link will require you to first sign onto the site as a “Public User”; then it will take you to the report. For an overview of the Olmstead ruling, go tohttp://www.accessiblesociety.org/topics/ada/olmsteadoverview.htm

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Enforcing the Olmstead decision

“No person should have to live in a nursing home or other institution . . . unnecessary institutionalization of individuals with disabilities is discrimination under the Americans with Disabilities Act,” said Clinton Sec. of Health and Human Services Donna Shalala. “If I were disabled I would want this choice — and so would you.” In a Jan. 14, 2000 letter to U. S. governors, HHS Sec. Donna Shalala pointed out that states were responsible for obeying the June 22, 1999 Olmstead Supreme Court decision, mandating “that services be provided to people in the “most integrated setting” in keeping with the Americans with Disabilities Act’s integration mandate. A letter to state Medicaid directors from HCFA outlined a “framework” to get states to comply with the Supreme Court decision. States now must have “a comprehensive, effectively working plan” for people to get services “in less restrictive settings.” If the state has a waiting list, it must move “at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated.” From Donna Shalala’s speech to The National Conference of State Legislators, July 28, 1999: In June, the Supreme Court issued an important decision in a case that’s familiar to many of you: the Olmstead case. The Court ruled that when a professional determines that a disabled individual can live in the community — and can be served there effectively — the person must be given the choice of doing so. If I were disabled I would want this choice — and so would you.In our view, the Court issued a very balanced and thoughtful decision in this case. Yes, the Court said, if community-based alternatives exist, then we are discriminating if a person who can benefit from community care — and who wants to live in the community — is institutionalized. At the same time, the Court said we must acknowledge that states have limited resources. The Court’s decision doesn’t require any state to incur excessive new costs. it does, however, require states to move at a reasonable pace to provide community-based alternatives. And the Court also said states can meet their obligations by having comprehensive plans. We support this. The Olmstead decision defines our mission: To build better systems of supports enabling people with disabilities to live life to the fullest. That’s the job we need to do — and I think we ought to welcome it. As we move to implement the Olmstead decision, there are three basic principles that all of us can agree on, now. We can agree that no American should have to live in a nursing home or state institution if that individual can live in a community with the right mix of affordable supports. We can agree that we all have the right to interact with family and friends in our communities…to make a living…and to make a life. And we can agree that it will take time, effort, creativity and commitment from all of us to make this a reality.Over the past years, my department has initiated a lot of activities to help transition people out of nursing homes and other institutions. We’ve focused on expanding and promoting home and community-based services. We’ve offered support and technical assistance to states. And we’ve used the flexibility of the Medicaid program to pursue our goals. In just the last year, we’ve developed legislative proposals and funded state grants to move people out of nursing homes. The Olmstead decision proves that we’ve been moving in the right direction. Now it’s up to all of us to work together to implement the ruling as quickly as possible. To that end, we’re ready to meet with you and others to discuss ways to work together to carry out the Olmstead decision. And that includes discussing the technical assistance we can provide. . . . . . . Keep in mind that Olmstead furthers our ultimate goal: a nation that integrates people with disabilities into the social mainstream, promotes equality of opportunity, and maximizes individual choice.” Read Shalala’s letter. Read the HCFA letter OTHER ITEMS OF INTEREST: The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented. The Independent Living Research Utilization Olmstead project provides disabiliity advocacy training on the Olmstead decision; their websiteoffers resources.Freedom Clearinghouse, a grassroots website designed to help disability activists enforce the Olmstead decision in states Consumer Choice and Control: Personal Attendant Services and Supports in America: Report of the National Blue Ribbon Panel on Personal Assistance Services, August, 1999 Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability “Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine