Circa 2009
The Community Choice Act: Change We Need
In 1990, Congress overwhelmingly passed the Americans with Disabilities Act (ADA). The ADA sets out four goals to truly bring people with disabilities into the mainstream of society: equal opportunity, full participation in the community, independent living and economic self-sufficiency. Nine years later, the United States Supreme Court, in the Olmstead v. L.C. decision, made clear that the ADA gives individuals with disabilities the right to make the choice to receive their care in the community rather than in an institutional setting (a nursing home or intermediate care facility for the intellectually disabled). This year marks the 10-year anniversary of the Olmstead decision.
Unfortunately, 10 years later, federal law still only requires that states cover nursing home care in their Medicaid programs. There is no similar requirement that states provide eligible Medicaid recipients home and community based care services. As a result, individuals with significant disabilities often face the untenable choice of either receiving their necessary care in a nursing home or other institution, or receiving no services at all. This is unacceptable.
The statistics are even more disproportionate for adults with physical disabilities. In 2007, 69 percent of Medicaid long-term care spending for adults with physical disabilities paid for institutional services. Only 6 states spent 50 percent or more of their Medicaid long-term care dollars on home and community-based services for older people and adults with physical disabilities while half of the states spent less than 25 percent. This imbalance continues even though, on average, it is estimated that Medicaid dollars can support nearly three adults with physical disabilities in home and community-based services for every person in a nursing home.
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Although every state has chosen to provide certain services under home and community-based waivers, these services are unevenly available within and across states, and reach a small percentage of eligible individuals. Individuals with the most significant disabilities are usually afforded the least amount of choice, despite advances in medical and assistive technologies and related areas. In many states there are significant waiting lists for these waivers, and this often results in the worsening of current disabling conditions or the exacerbation of secondary conditions. Even after one is deemed eligible for a waiver program, the allowable expenses under the program are often capped on a monthly or yearly basis. Sometimes these capped amounts may not be sufficient for an individual with a disability, due to the nature of the services and supports that are necessary to live in the community. Or the services may be capped in other ways, such as limited enrollment, limited services, limited disabilities, limited ages, or de facto exclusion of particular conditions.
The vast majority of people prefer to remain in their community and receive the assistance they need with daily living at home. This is true for people with physical disabilities, intellectual and developmental disabilities. The ability to choose to receive community based services and supports is critical to allowing people to lead independent lives, play an active role in day-to-day family life, have jobs and participate in their communities.
My bill, the Community Choice Act, simply requires that all Medicaid eligible individuals with disabilities have a choice between receiving care at home or in an institution.
The Community Choice Act requires that Medicaid recipients with conditions serious enough to qualify for an “institutional level of care” must be given access to personal care services in the community, even in states that do not currently offer these services or offer them to a limited population. Personal care services under the Community Choice Act include help with accomplishing the activities of daily living such as dressing, bathing, grooming and eating; and help with instrumental activities including shopping, chores, meal preparation, finances and health related functions. At the same time, the combination of financial eligibility limitations and requirements on the severity of the condition under Medicaid impose realistic limitations on these government funded services.
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Studies show the cost of providing services at home or in the community is much lower than in an institutionalized setting; that, because providing home and community based care services is less expensive than nursing home care, it allows more people to be served; and that use of home and community based services can slow growth in Medicaid spending.
Addressing our vast unmet long term care needs in the near future is critical. It needs to be a part of health care reform. The Community Choice Act has the potential not only to genuinely reduce the numbers of people with disabilities living in institutionalized settings, but also to reduce or delay nursing home admissions and to allow more individuals to receive needed personal care services, while providing Americans with disabilities choice about where to receive the services and supports they need.
Sincerely,
Senator Tom Harkin
