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From the Director
Equal Choice is for Elders Too
by Catherine R. May, Executive Director
Mass Home Care, the association of Aging Service Access Points (ASAPs) across the commonwealth, has filed legislation at the State House that would give elders the opportunity to choose where they wish to receive their long term care - at home or in a long term care facility. Passage and implementation of this bill would begin to address the lack of resources for community care which leads to the institutionalization of many older persons who would, given the choice, wish to be cared for in their own homes.
A landmark Supreme Court case, Olmstead v. L.C., rendered in June 1999, found that the unjustified segregation and institutionalization of people with disabilities constitutes unlawful discrimination in violation of the Americans With Disabilities Act (ADA). The Supreme Court went on to say that the disabled should be served, if they choose, in the most integrated setting.
After the Olmstead decision, the federal government said it would work with states to increase community based alternatives to institutional care. Olmstead applies to all with disabilities who are protected from discrimination by the ADA; ADA applies to all state programs, not just the Medicaid program.
Elders who are appropriate for long term care do meet the definition of disability. The ADA defines disability as "physical or mental impairment that substantially limits one or more of an individual’s major life activities." These activities can include walking, seeing, hearing, caring for one’s own personal needs, working, etc. The disabled person must meet eligibility requirements in order to get services in any state programs or agencies. Disability is not related to age, but if an elder has mental or physical impairments that substantially limit one or more activities of daily living, he or she would be entitled to protection under the ADA.
The Olmstead decision says that discrimination against the disabled is a violation of their civil rights. As former Secretary of Health and Human Services Donna Shalala wrote to all the Governors in January 2000, a mutual goal of state and federal governments is "integrating individuals with disabilities into the social mainstream, promoting equality of opportunity and maximizing individual choice.
Massachusetts routinely denies elderly disabled persons the right to live in the most integrated environment because it directs most of its long term care dollars to care delivered in institutions. For example, in 1998, 71% of the state’s Medicaid dollars were spent on nursing home care. From 1992-1997 there was a 42%increase in nursing home beds in the state, and a 34% increase in nursing home residents. There was no comparable increase in those served at home.
Indeed, there are so many nursing home beds in this county, that for the second year in a row, there are over 200 beds waiting for residents.(New nursing home rooms cannot be built, or added to a facility, without passing a state process.)
There is a very strong lobbying group who advocate for nursing homes and their concerns; any requests for a more equitable distribution of the state’s long term care monies inevitably comes up against the nursing home group. Monies diverted from institutional long term care to long term care in the community will mean more empty nursing home beds, that is an economic reality, but consider also the quality of life and patient autonomy issues at stake.
Medicaid pays for most of the long term care for the disabled. A waiver to divert Medicaid monies away from institutional care, called the home and community based waiver, is used by the states. Funding for home and community Medicaid waiver services for elders totaled $5.5 million in Massachusetts in 1998. Other states are spending much more on the waiver for Medicaid eligible elders. Oregon has only half the elder population of Massachusetts, but spent nearly $120 million on its waiver in one year. Missouri, Washington, Georgia , Wisconsin (where the new federal Secretary of Health and Human Services, Tommy Thompson, hails from), Kentucky, Virginia, Montana, and Connecticut all have fewer elders than Massachusetts, but spend at least twice what the commonwealth spends on its home and community waiver.
The Equal Choice bill will require that a disabled person be given the choice of setting in which to receive the necessary level of care. What is more, the Equal Choice bill will raise again the Olmstead issues, as well as issues about care raised in recent state court decisions, as advocates and consumers seek to expand funding for community based services as a civil rights issue under the Americans With Disabilities Act.
Equal Choice for elders and the disabled : this is an idea whose time has come.