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It's Time to Fight for Olmstead Plan Implementation

By Janine Bertram Kemp

The disability rights movement is all abuzz about “the Missouri Letter.” For the first time in 10 years, the federal government may enforce the Olmstead decision and protect the civil rights of people with disabilities (PWDs) who choose to live in their community.

(The Olmstead decision is based on a 1999 Supreme Court judgment on behalf of two women with developmental disabilities who were voluntarily admitted to a hospital for treatment in a psychiatric unit. They later indicated their preference for discharge, and the professionals working with them assessed that they were ready to move into a community setting with appropriate support. They were not successfully discharged from the hospital, however, and a lawsuit followed. The Supreme Court eventually ruled that under Title II of the Americans with Disabilities Act, the women had the right to receive care in the most integrated setting appropriate and that their unnecessary institutionalization was discriminatory and violated the ADA.)

Many national leaders now believe that we in the disability community

have a chance to change the course of history as it pertains to getting and keeping people with disabilities out of nursing homes and other institutions. Leading disability activists believe the U.S. government has signaled that it is willing to let people with disabilities out of institutions -- what some advocates have called “prisons.”

The late Justin Dart Jr. used to encourage disability advocates by calling us “patriots” and exhorting us to “lead on.” Kirsten Dunham and Paraquad (the St. Louis CIL) have been leaders in the struggle to force their state to implement Olmstead.

Dunham is associate policy director at Paraquad and was a key player in the Disability Coalition on Health Care Reform’s campaign to stop Missouri from applying the "homebound rule" to people with disabilities on Medicaid. Their efforts led the Center for Medicare and Medicaid Services (CMS) to write the Missouri Letter.

On October 30th, 2009, 10 years after the Supreme Court issued the Olmstead decision, the CMS wrote the state of Missouri saying, in essence, that if the state did not comply with the Supreme Court's Olmstead ruling, Missouri would lose its Medicaid funds.

The letter directs Missouri to comply with an earlier CMS directive sent to all 50 state Medicaid directors early in the administration of George W. Bush. CMS said that people with disabilities have a choice – the choice to be given services in the most integrated setting: in their own homes and in their own communities.

In 1999, after the Olmstead decision was filed, CMS came up with policy guidelines. One of those guidelines was that states should not use the Medicare homebound rule in their Medicaid programs. According to Medicare home health regulations, persons must be homebound to receive community-based services. Basically, that means they can leave their homes for medical appointments only -- not for going to the movies, to restaurants or to other activities, including jobs.

Although the disability community has made numerous attempts to get that rule overturned, it still stands. Despite the fact that CMS directed states not to use the homebound rule with Medicaid, many still follow it, including Missouri. Last year, advocates began a campaign to get that state to stop and began by writing to Missouri's Medicaid director with no results. Then they began writing to the director of the CMS. Several letters went out that included support from many social justice groups and health care advocates.

“It was a systems advocacy effort that brought some results,” Dunham said. “In Missouri, we focused on the homebound rule. In other states, advocates can use other tools like civil rights complaints and lawsuits to make your state implement Olmstead and the ADA.”

“The homebound rule forces people with disabilities to choose between getting services and getting out and living your life,” said Michelle Steger, leader of the Missouri chapter of ADAPT. “I have not heard that the CMS letter is making a difference yet in Missouri.”

According to Dunham, Missouri recently responded to the CMS before the 30-day deadline to do so expired. The state claimed it does not know if it can comply with the elimination of the homebound rule, citing budget constraints. It asked for more time to comply.

Is Missouri calling CMS’ bluff? If the state refuses to comply with the directive, then CMS will either yank the state’s Medicaid dollars or let it keep violating the civil rights of its citizens with disabilities.

Even if the CMS letter has not yet translated into a policy of real choice for Missourians with disabilities, it is of national importance to disability rights advocates.

“Although we had some run-ins with the Obama administration, this action by CMS gives us hope that, at least with enforcement on Olmstead, the feds are moving in the right direction,” said Bob Kafka. Kafka, ADAPT's national organizer, is an expert on disability policy.

The “run-in” to which Kafka referred occurred at a meeting with health care czar Nancy-Ann DeParle and her assistant, Henry Claypool (a longtime disability advocate). DeParle dismissed ADAPT representatives by stating, “You’ll just have to get used to the institutional bias.”

DeParle’s imperious words and attitude aside, top administration officials at the Department of Justice (DOJ) have signaled to NCIL, ADAPT and other disability organizations that they are quite interested in enforcing the Home and Community-Based Services (HCBS) provisions of Olmstead and the ADA.

“Send us some solid cases,” Tom Perez, assistant attorney general of civil rights at the DOJ, told disability leaders. Attorney General Eric Holder also expressed interest in enforcing Olmstead.

Mike Oxford, executive director of the Topeka Independent Living Resource Center and former president of NCIL, attended the meetings with DOJ officials. He characterized Perez as “gung ho about Olmstead.”

Kafka agreed. “The HHS (Health and Human Services) Office of Civil Rights may take some steps to enforce Olmstead, but the big enchilada is the Justice Department.”

What CMS did by writing the Missouri Letter could be the sea change that opens the way for getting people with disabilities out of nursing homes and institutions and into HCBS. For 10 years, the federal government backed states' rights, that is, it would not enforce the ADA or Olmstead because it claimed that states have the right to decide how federal dollars are spent -- even if they are violating civil rights laws.

The states' rights argument was used to avoid enforcement of the 1964 Civil Rights Act that mandated equality for racial minorities and women. After Olmstead, people with disabilities were locked away in institutions and had their civil rights violated. Though not lynched or beaten, like African Americans were in the 1950s and 1960s, PWDs are still abused, neglected and sometimes killed in institutions.

“This could be the signal that the Department of Health and Human Services ' Office of Civil Rights (OCR) and the DOJ are finally going to take a civil rights view of disability," Kafka said. "We hope they are signaling that they will hold states accountable for Olmstead like they did during the civil rights era.

“People bitch and moan but won’t go to the trouble of finding out what their states are doing vis a vis Olmstead and institutionalization policy. Now is the time for advocates in all 50 states to learn what Olmstead violations exist and lodge complaints. We cannot blithely say the sky is falling. We must know what our states are doing. If there are cuts to HCBS, we need to file those complaints with HHS, OCR and DOJ.

“This is a key opportunity that the disability community has not seen in decades. I’m hoping that DOJ and the Office of Civil Rights at HHS are inundated with complaints. The power of CMS is in rule implementation and money. We must make them hold states accountable.”

Currently, many states are cutting HCBS services but not decreasing the dollars they spend keeping people in institutions (the nursing home industry has a powerful lobby). The first step for CILs and other advocates is to assess their state’s implementation of the Olmstead decision. They should find out whether there is a formal Olmstead Plan or what the policy is for implementing "the most integrated setting." Learn what number of people will be diverted from institutions and how many will be transitioned out each year.

Does your state have a waiting list for HCBS? Disability rights attorney Steve Gold thinks that in itself may be an enforceable civil rights violation under Olmstead and the ADA.

Locate people in nursing homes and other institutions who want to live in the community and file civil rights complaints with the Department of Justice (http://www.justice.gov/crt/drssec.php) and HHS Office of Civil Rights (http://www.hhs.gov/ocr/ -- click on “How to File a Civil Rights Complaint.”)

“We can’t let states off the hook," Dunham said. "We have enforcement tools with CMS and DOJ. Advocates should use these when states try (to) balance their budgets on the backs of people with disabilities. We’ve got to make sure that they are not making budget cuts in a way that violates the rights of people in nursing homes or at risk of going into nursing homes.”

The time is now. The resources are there. It’s up to advocates in each state to make sure the Olmstead decision is implemented.

ADAPT compiled a number of detailed questions and benchmarks advocates can use to learn if and how their state is implementing Olmstead. These points can be used to request information by writing state officials. Start with the state Medicaid director. If your state stalls on giving answers, send the questions as a Freedom of Information Act request.

Questions for Evaluating Olmstead Compliance in Your State

Olmstead Compliance Questions

Janine Bertram Kemp, a writer and disability rights activist, serves on the board of Disability Rights Oregon and is a member of ADAPT. She lives in Mt. Hood, OR.