1) What’s Happening in the Nation’s Capital?
Olmstead 10th Anniversary!
Breaking News: Whitehouse Spokesperson Announces “The Year of Community Living”
2) National News
Nursing Homes Get Old for Many with Disabilities
New Protections for Tenants in Foreclosed Properties
Current Voting Issues, Part I
Enter Steve Gold’s Olmstead Anniversary Competition and Win Prizes!
3) State News
Connecticut Advocates March for Olmstead Implementation
Georgia Olmstead Activities
4) Announcements and Additional Resources
ELDHE Meeting of Disability Study Group
Olmstead 10th Anniversary!
Today marks the 10th anniversary of the US Supreme Court’s Olmstead decision. In this landmark decision, the Supreme Court affirmed the right of people with disabilities, regardless of age or type of disability, to live in the most integrated setting. Prior to this decision, it was often viewed as legal and acceptable for states to put individuals in nursing homes just because they needed a few hours of help each day and could not privately afford that help.
It’s been 10 years since Olmstead, and while some progress has been made, much more is needed. Unfortunately, the debate over healthcare reform is excluding the long term care needs of seniors and people with disabilities. This is a mistake that will cost our nation billions of dollars in the long run and will cost many people their choice to stay at home and receive services.
Long term care services and supports, including in-home services and nursing facilities and other institutions, are a large portion of our nation’s health expenditures. Nursing facilities are an expensive and outmoded means of providing needed assistance to seniors and younger people with disabilities. Very few people actually want to live in nursing facilities and states could save money if they provided people the supports needed to live at home. The time for change is now.
Legislation called the Community Choice Act (HR 1670 / S 683) would eliminate the institutional bias that forces people into expensive facilities, rather than providing services at home.
Healthcare reform is the perfect vehicle to end the institutional bias and pass CCA, but the White House and leaders in Congress are indicating that they will work on this issue “later”. In the words of Martin Luther King, Jr., “‘Wait’ has almost always meant ‘Never.’” Our nation cannot continue to wait for reform in long term care.
Chris Hilderbrant, Director of Advocacy, Center for Disability Rights
Breaking News: Whitehouse Spokesperson Announces “The Year of Community Living”
Source: Disability Scoop, June 22, 2009
“The president remains committed to expanding access to community services and independent living and to addressing civil rights concerns of Americans with disabilities to have the right to live in the most integrated setting appropriate to their needs as enshrined by the Supreme Court in the Olmstead decision,” White House spokesman Shin Inouye told Disability Scoop.
As part of that commitment, the president is launching an initiative Monday called “The Year of Community Living,” which will include efforts to increase access to housing, community supports and independent living. As part of the initiative, Health and Human Services Secretary Kathleen Sebelius and Housing and Urban Development Secretary Shaun Donovan are expected to announce the availability of an increased number of Section 8 housing vouchers Monday afternoon.
The initiative will also include public listening sessions to be held across the country by the Department of Health and Human Services.
Nursing Homes Get Old for Many with Disabilities
Source: ProPublica, by Jennifer LaFleur
Melody Ping never thought she would be trying to move out of a nursing home. She lived in a St. Louis apartment for 19 years and worked as an accountant until two years ago, when she lost her job. Ping, who has multiple sclerosis, couldn't find new work. When her unemployment ran out, she ended up on Medicaid in a nursing home.
Ping, 51, is among tens of thousands of people nationwide who want to live on their own, but instead remain in nursing homes, rehab centers or state hospitals, often at a higher cost to taxpayers because of a historic bias toward institutional care.
Ten years ago today, the U.S. Supreme Court said that bias amounted to discrimination [1]. Now, as disability advocates celebrate the anniversary of that landmark ruling, they worry the Obama administration is backing away from a pledge to give more people with disabilities the option to live at home.
As a senator, Barack Obama co-sponsored the Community Choice Act [2], pending legislation that would give Medicaid recipients equal access to services in the community and not force them into institutions. But the administration recently said it would not address the issue [3] as part of its proposed health care overhaul.
Disability rights advocates were so angered that at least 90 were arrested during an April protest outside the White House. For some, the dispute was a blunt reminder of how hard it has been to put an end to discrimination even with affirmation from the Supreme Court.
"I don't think most policymakers see it as a civil rights issue," said Andrew Imparato, president of the American Association of People with Disabilities [4]. "I don't think most people see the ability of getting out of bed and dressing in your own home as a civil right."
A spokesman said President Obama continues to support efforts to help people with disabilities move out of nursing homes.
About one in five nursing home residents responding to a survey by the Centers for Medicare and Medicaid Services indicated they would prefer to live in their communities. That translates to 270,000 of the nation's 1.35 million nursing home residents.
Demand for community services is likely to mushroom in coming decades. Improvements in medical technology help more people survive serious injuries, but often with a disability. Baby boomers entering their retirement years are demanding alternatives to nursing homes.
"If you can't hear the thunderstorm coming, you're not listening," said disability advocate Mark Johnson of Atlanta. Living at home "is what people would want for themselves and their families." Read More. Also, check out ProPublica’s “Timeline: After the Olmstead Decision”.
New Protections for Tenants in Foreclosed Properties
By Brian Peters
With the economic crisis and the wave of foreclosures spreading across the nation, hitting some communities hard, advocates began looking for a way to protect tenants who may have been faithfully paying their rent with no idea their home was about to be foreclosed because the landlord did not pay the mortgage.
Concerned advocates were able to successfully advocate for the passage of S.896, Protecting the Tenants at Foreclosure Act, which was signed by President Obama on May 20th and became effective that same day.
The new law requires that the new holders of the mortgage give tenants 90 days notice prior to eviction. Of course, this has some exceptions-if the tenant is a member of the former owner’s immediate family (child, spouse or parent), or is renting the home much less than what it should rent for, then this protection doesn’t apply. The lease must have been done as an “arms-length transaction” which means the agreement was done as if they didn’t know each other-no special pricing or favors.
For tenants with Section 8 vouchers, the law is a bit different, if the foreclosure happens during the Section 8 lease, the sale itself is not considered good cause for ending the lease. However, the new owners can terminate the lease IF the new owner will live in the home as his/her main residence AND gave the tenant a notice to vacate at least 90 days prior. The new owner also becomes the new landlord in the Section 8 contract if not moving into the home.
This law expires at the end of 2012. Because not many people are likely aware of this, it is important that this information be publicized. The National Low-Income Housing Coalition has good information on this issue at http://www.nlihc.org/template/page.cfm?id=159.
Current Voting Issues, Part I
This is the first of a three-part series of articles prepares by the NCIL Voting Rights Working Group. This week’s article covers the experiences of some NCIL members as they attempted to vote during last November’s election, as well as an opportunity to share your stories with NCIL in order to help us advance voting rights nationally.
A Reflection on the Previous Election: Voting machines have been implemented in polling places to maximize accessibility for persons with disabilities and anyone else experiencing difficulties in voting. However, while trying to utilize the newly purchased machines during this past historical election, many problems arose as demonstrated below.
- The screen was visible to other people waiting to vote, therefore privacy was not possible.
- The machine was situated in a space which did not allow a person in a wheelchair to comfortably move around it. After it became obvious the space was too small, the machine was moved.
- Poll workers were “deciding” who should use the machine based upon a visual assessment. It did not seem that there were standard protocols for use or for letting all voters know the machine was available for anyone.
- People with disabilities were targeted.
- The headphones were inadequate for filtering out background noise.
- Several people complained that they could not hear the instructions.
- One person stated that the computer “froze” three times during her voting process. Eventually a technician from the county office was brought in to fix the problem. But, it took her a long time to actually vote.
- Poll workers were not prepared to assist people with disabilities who used the machine.
What Is Going On Where You Live About Voting?
To maximize the intended purpose of the Help America Vote Act (HAVA) the National Council on Independent Living (NCIL) Voting Rights Working Group wants to know what is going on in your community or state to get people with disabilities involved in the voting process. Such examples would be registering to vote, being comfortable with voting machines, and by volunteering as poll workers. We are also looking for stories about individual voting experiences while trying to use the accessible voting system. When we get your stories, we will reprint your experiences in anticipation that it will act as a catalyst to help others to get started to maximize voting access and participation by Americans with Disabilities. We will also use these testimonials to educate our Congressional leaders of the many barriers that still thwart millions of our brothers and sisters with disabilities from fully participating within the voting process.
Please submit your stories to Jason@ncil.org. Please feel free to share this request widely.
Enter Steve Gold’s Olmstead Anniversary Competition and Win Prizes!
June 22, 2009, marks the 10th anniversary of the Supreme Court's Olmstead decision, holding unnecessary institutionalization violated the Americans with Disabilities Act. The decision requires states to move people who want to live in the community out of institutions.
I am sponsoring a national contest to determine which States have best implemented the 1999 Olmstead mandate. Points will be awarded for each of the following categories. A nationally reknown panel has been assembled to judge all entries. Here are the categories:
- Ask your State Medicaid director for a year by year breakdown of the number of people whom the State has assisted to leave a nursing home. If data is not available for each of the past ten years, points will be prorated depending on the number of years for which you obtain the information. Additional points will be awarded if you learn where the people moved to, e.g., own home or apartment, a relative's home, assisted living, etc., after they left the nursing home.
- Find out the amount of Medicaid savings on average for each person who moved from the nursing home institution to the community.
- For each year since Olmstead, find out the Medicaid average per diem rates paid to nursing homes and the Medicaid average per diem rates paid to home and community-based services.
- Ask for your State's written guidelines/criteria for assessing what services an institutionalized person may need in the community. Does your state have their own staff make the assessment or does it rely on the nursing home's staff?
- Although not part of the contest, extra points will be awarded if you also obtain the written criteria your State uses to determine if and when a person in the community is at "imminent risk" of becoming be institutionalized and if based on the criteria, your State will provide services to avoid unnecessary institutionalization.
- Find out if your State recognizes the right of persons with a disability in a nursing home, who have mental capacity, to decide they will take a "risk" in the community rather than continue to be institutionalized. If your State does recognize this right, how does your State enforce it?
- Has your State publicized its successes, and if it has, provide some of the success stories?
No entry emailed or posted later than August 1, 2009, will be accepted. Sorry. If it is necessary to file a "Records Request" or "Freedom of Information Request" to obtain this information, we will permit an entry later than August 1, 2009, with appropriate substantiating documentation. Texas has filed an early (partial) entry to win!
The Texas applicant states that 18,000 Texans have been moved from nursing homes to the community. Texas does track where the people moved to. It is 20-30% cheaper to serve the people in the community. Yes, Texas has both an "imminent risk" form, as well as an individual responsibility agreement assuming risks. Last, the applicant's referred us to http://www.dads.state.tx.us/services/pi/olmstead where former residents tell their own stories.
Steve Gold, The Disability Odyssey continues: Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.
Connecticut Advocates March for Olmstead Implementation
Source: Hartford Courant
Disability advocates marched to the State Capitol to commemorate 10th anniversary of Olmstead Supreme Court decision requiring the state to provide opportunities for people with mental disabilities to live in the community in group homes if they can fare as well as in state hospitals. See the Pictures.
Georgia Olmstead Activities
BAIN Brings Awareness to Community: The long road home is something many will never journey down simply because they don't know their rights. To bring awareness to the community about the rights of people with disabilities that have been placed in nursing homes, BAIN, Inc held a ceremony in Willis Park as the kick-off for this year's Long Road Home 4 day event.
The Long Road Home began several years ago in celebration of the Olmstead Decision. 10 years ago the U.S. Supreme Court issued the Olmstead v. L.C. decision which changed the lives of thousands of disabled persons who had been placed in nursing home but had the desire to live independently out in the community. Most were placed there by family and there was no law that said they could transition out. They were stuck. All their money went to the nursing home for their care and there were few community based services or advocates for them.
In the Olmstead decision the court ruled that the Americans with Disabilities Act may require states to provide community-based services rather than institutional placements for individuals with disabilities. In a 6-3 opinion written by Justice Ruth Bader Ginsburg, the court affirmed a ruling by the United States Court of Appeals for the Eleventh Circuit, saying that "unjustified isolation of individuals with disabilities is properly regarded as discrimination based on disability."
BAIN, with the work of their Nursing Home Transition Coordinator Wanda Becon, has successfully helped 3 of their consumers transition from a nursing home to the community. This is one of their stories. Read More.
ELDHE Meeting of Disability Study Group
Ecole Libre Des Hautes Etudes (ELDHE), A not-for-profit, 501-C3 organization, Meeting of Disability Study Group, SG-4-7 on Community-Based Services and Supports for Frail Elderly and Younger Disabled Adults
Date and time: Wednesday, July 1, 2009, 9:00 am -5:00 pm.
Location: Chicago Hilton Hotel, 720 South Michigan Avenue, WILLIFORD A room
Chair: René I. Jahiel, MD, PhD, President, ELDHE, NY, NY.
Objectives: To advance knowledge of US and French research activity on access to and quality of services and support in the home for frail elderly and younger disabled adults.
Agenda
- 9:00-9:15: Introduction of participants
- 9:15-10:15: Issues in rebalancing long term care from institutions to community and personal assistance services (PAS). Discussion leader: Mitch LaPlante, PhD (University of California San Francisco, UCSF)
- 10:15-10:30: Break
- 10:30- 11:30: Issues in the coordination of services and supports for persons with complex needs. Discussion leader: Deborah Peikes, PhD (Mathematica, Princeton, NJ)
- 11:30-1:00: Luncheon break
- 1:00 –2:15: Issues in adapting consumer assessment of health care providers and systems to consumers with specific impairments. Discussion leader: Steven Barnett, MD, University of Rochester Medical Center, NY)
- 2:15- 3:00: Issues in optimal utilization of assistive technology (AT) for persons with disabilities in their home and the community. Discussion leader: Marcia Scherer (President, Institute for Matching Persons & Technology, Rochester, NY)
- 3:00-3:15: Break
- 3:15- 4:00: The French government’s ongoing research program on home care (aides-à-domicile) for frail elderly persons and younger persons with disabilities. Discussion leader: René Jahiel
- 4:00- 5:00: Open discussion of policy research for services and supports in the home.
Registration: There is a $50 registration fee to cover the luncheon and other costs, payable at the door, by check or cash only. Please contact Dr. Rene Jahiel for further information at Jahiel@nso2.uchc.edu.
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June 22, 2009