The feds’ new Olmstead guidelines are looking like much ado about something, say advocates

Disability advocates not only like what the federal government is saying about how states should implement the U.S. Supreme Court’s Olmstead decision, they like that the federal government is stating it so clearly.

"The letter is a good start," says Mark Murphy, deputy director of the Disabilities Law Project, referring to Jan. 14 correspondence from the Health Care Financing Administra-tion (HFCA) to state Medicaid directors on how to comply with the access and other requirements of L.C. v. Olmstead.

The landmark June 22, 1999, decision expanded the right to community-based care for Medicaid beneficiaries who otherwise are entitled to institutional care under the program.

Lest anyone miss the point, a separate letter from Dept. of Health and Human Services (HHS) Secretary Donna Shalala on the same day encouraged governors to "place substantial emphasis on developing programs and services for individuals with disabilities" as they developed funding priorities for their states.

"The letter sends a pretty powerful message," says Jennifer Mathis, a staff attorney with the Bazelon Center for Mental Health Law in Washington, DC. "We believe some state attorneys general looked at the decision as not changing anything. But it says that states potentially will have to do more than they are now doing.

"The letter doesn’t say explicitly that states must expand their Medicaid program, but it acknowledges that Medicaid is a critical source of funds for states to expand community-based programs and comply with Olmstead," she says.

The court’s decision in the suit, brought under the Americans with Disabilities Act (ADA), identified circumstances under which Medicaid beneficiaries who would be eligible for institutional care should be afforded access to community-based care:

• The state’s treatment professionals reasonably determine that such placement is appropriate.

• The affected persons do not oppose such treatment.

• The placement can be reasonably accommodated, taking into account the resources available to the states and the needs of others who are receiving state-supported disability services.

The Supreme Court also said that a State may be able to meet its obligation under the ADA by having a plan to ensure that individuals with disabilities receive services in the most integrated setting appropriate. The court also spelled out its expectation that the state keep its waiting list moving at a reasonable pace — a pace not controlled by a state’s objective of keeping its institutions fully populated.

"We’re offering assistance to states for the development of comprehensive, effectively working plans that will show they are in compliance with the court order," says Sheila Foran, a representative of the HHS Office of Civil Rights (OCR), whose agency helped develop the Olmstead guidance with HCFA.

"It’s important that the government is including persons with disabilities in the process and important that it recognizes that states must address not only those who are institutionalized but also those who are at risk for institutionalization," says Ms. Foran.

Advocates should be at the table when states are determining if they have a comprehensive, effectively working plan, concurs Elizabeth Priaulx, an attorney who is a community integration specialist with the National Association of Protection and Advocacy Systems (NAPAS) in Washington, DC.

"We’re pleased that OCR stayed in touch with advocates and said in the letter that states should work with advocates," she says.

NAPAS developed a template of principles that should be in a state comprehensive plan and much of that material is reflected in the technical assistance included in the HCFA/OCR letter to state Medicaid directors, Ms. Priaulx says.

In their letter, HCFA and OCR call on states to take these actions:

• Develop a comprehensive, effectively working plan (or plans) to strengthen community service systems and serve people with disabilities in the most integrated setting appropriate to their needs.

• Actively involve people with disabilities and, where appropriate, their family members or representatives, in design, development, and implementation.

• Use the department’s technical assistance materials as one of the guides in the planning process.

• Raise questions that need to be resolved and share ideas regarding technical assistance that would be helpful.

While HCFA, OCR, and advocates for the disabled say they recognize that no one model plan will be appropriate for all states and situations, there are some key principles that probably should be recognized in any plan. Those principles include:

• Recognize the need for a comprehensive, effectively working plan or plans for providing services to eligible individuals with disabilities in more integrated, community-based settings.

• Provide an opportunity for interested persons, including individuals with disabilities and their representatives, to be integral participants in plan development and follow-up.

• Take steps to prevent or correct current and future unjustified institutionalization of individuals with disabilities.

• Ensure the availability of community-integrated services.

• Afford individuals with disabilities and their families the opportunity to make informed choices regarding how their needs can best be met in community or institutional settings.

• Take steps to ensure that quality assurance, quality improvement, and sound management support implementation of the plan.

The technical assistance document provides guidance on how to carry out each of the six principles.

Although advocates for the disabled are supportive of the government’s initial steps, they recognize that what really matters is how quickly states move to implement Olmstead. Some advocates are saying that a good way to celebrate the July 26 10th anniversary of ADA would be for states to have their plans in place and functioning by then.

Ms. Foran says she’s heard that suggestion but believes it’s hard to say if that will be enough time. "It really depends on the state, its existing infrastructure, and its ability to quickly shift resources to meet the needs of a new infrastructure. We’d certainly like to have as much done by then as possible."

"Most states say they favor the concept but then don’t take prompt steps to implement it," says Mr. Murphy, who serves the Pittsburgh office of the Pennsylvania-based Disability Law Project.

"The thing to look for down the road is how much time the states will take. Letters from the government help, but they don’t necessarily push state officials into taking action," he says.

"The fact that states have to have a comprehensive, effectively working plan will help move things forward. Having a plan in place will be an effective defense for states, but it also will mean that people are actually living and working in communities," Mr. Murphy adds.

Contact Ms. Foran at (202) 619-1002, Ms. Priaulx at (202) 408-9514, Ms. Mathis at (202) 467-5730, ext. 22, and Mr. Murphy at (412) 391-5225.