News Release

NCD #03-437
February 14, 2003
Contact: Mark S. Quigley
202-272-2004
202-272-2074 TTY
mquigley@ncd.gov

Statement by the National Council on Disability on MiCASSA

WASHINGTON-The National Council on Disability (NCD) acknowledges the significance of the Medicaid Community-based Attendant Services and Supports Act (MiCASSA) activities of September 17, 2003, by and on behalf of all people committed to freedom and independence for all. NCD applauds their unwavering dedication to the spirit of freedom that all Americans hold near and dear.

As our nation's population ages, the costs and alternatives for community living, long-term care, and support services have become a subject of growing attention and concern. For many people with disabilities, including people living in institutions because of the lack of community-based or in-home alternatives and those at risk of entering institutional care settings against their will, the issues take on pressing personal significance.

Fortunately, there are some initiatives that have garnered attention and momentum in our nation that can correct this nationwide problem. The first is MiCASSA; the second is Olmstead. Together, these two initiatives represent a community imperative and a vision for promoting the independence of people with disabilities in all walks and circumstances of American life.

MiCASSA

The extent of unnecessary institutionalization of people with disabilities in the United States is daunting. There are too many hundreds of thousands of people with disabilities who, because of the bias of the current Medicaid system, are destined to spend their lives in nursing homes or institutions against their wishes.

If people who have economic needs need assistance, the default given to them through Medicaid is a nursing home. It should be the other way around. The person first should be given the opportunity to live in the community. People are most productive and have the highest quality of life in an integrated community with friends and family members nearby.

MiCASSA, introduced but not yet enacted in the last several Congresses and supported overwhelmingly by the disability rights movement, is important because it would end the institutional bias of Title XIX of the Social Security Act by allowing people eligible for services from nursing facilities or intermediate care facilities for people with intellectual disabilities the election to receive community-based attendant services and support. Services covered by MiCASSA would include assistance with activities of daily living, including personal care, household chores, shopping, managing finances, using the telephone, participating in community activities, supervision, and teaching community living skills. MiCASSA would require services that are provided in the most integrated setting appropriate to the needs of the individual;

* based on functional need, rather than diagnosis or age;
* in home or community settings, including school, work, recreation, or religious settings;
* selected, managed, and controlled by the consumer of the services;
* supplemented with backup and emergency attendant services;
* furnished according to a service plan agreed to by the consumer; and
* accompanied by voluntary training on selecting, managing, and dismissing attendants.

MiCASSA would allow consumers to choose among various consumer-controlled service delivery models, including vouchers, direct cash payments, fiscal agents, and agency providers.

Olmstead

The Supreme Court's 1999 Olmstead decision has become a powerful impetus for a national effort to increase community-based alternatives and eliminate unjustified and restrictive institutional placements.

NCD's recent report on the status of Olmstead implementation indicates that, overall, progress to varying degrees has occurred in the implementation of the Olmstead decision. However, given the many areas where progress has not yet been achieved and in recognition of the relatively brief time since the decision was rendered and governmental initiatives were undertaken, it is clear that further efforts are necessary to increase public awareness of Olmstead. It is also necessary to provide education and clarification regarding the applications and implications of the decision to relevant entities, and provide resources necessary to both encourage and to ensure effective adherence to the spirit and intent of Olmstead.

NCD's recommendations for the Federal Government include the following:

• The U.S. Department of Health and Human Services (HHS) and the Centers for Medicare and Medicaid (CMS) should provide more explicit guidance on implementation of Olmstead v. L.C.
• CMS should determine whether the states are adequately identifying residents of Medicaid-funded and -certified facilities that can handle and benefit from community living.
• HHS should refocus its Real Choice Systems Change grant program as a true system change project by shifting from funding demonstration projects to funding change that affects entire service systems.
• HHS should require the states to identify all institutionalized people in the state and their need for community services.
• CMS should use its waiver approval authority to require the states to minimize "institutional bias" in the choice between institutional and home- and community-based waiver services.
• HHS should provide federal financial assistance to states to provide small grants to people with disabilities for transition costs from institutions to community.

Medicaid should pay for renovations to houses, such as building ramps or renovating bathrooms that would allow people with disabilities to remain in their homes rather than having to move to a nursing home.

Conclusion

The Olmstead decision has become a powerful impetus for a national effort to increase community-based alternatives and eliminate unjustified institutional placements. Ultimately, only comprehensive amendments to Title XIX of the Social Security Act (SSA), similar to the amendments proposed in MiCASSA, will overcome the institutional bias within the Medicaid program.

In the meantime, however, there are many measures short of a thorough revision of Title XIX of the SSA that federal agencies can and should undertake. We must continue to empower Olmstead stakeholders in their state "systems change activities," that is, in their efforts to redesign the state service systems to enhance choice, independence, self-determination, and community integration.

Our nation will be much more prosperous when it makes real the right of people with disabilities to live in the most integrated setting.