Academic journal article American Journal of Law & Medicine

A Right to Personal Assistance Services: "Most Integrated Setting Appropriate" Requirements and the Independent Living Model of Long-Term Care

Academic journal article American Journal of Law & Medicine

A Right to Personal Assistance Services: "Most Integrated Setting Appropriate" Requirements and the Independent Living Model of Long-Term Care

Article excerpt


The United States is currently entering a period in which the demand for longterm care services is growing at a particularly rapid rate; it is projected that the inflation-adjusted expenditures for long-term care will double between 1993 and 2018.1 As the population continues to age and become more chronically ill and disabled, the need to expand our long-term care capacity, and the long-term care options available, has become self-evident. The question is how we can meet this need in a cost-effective manner that is satisfactory to the consumer of services.

The population of people who need long-term care consists of people who, by virtue of their disabilities (i.e., functional limitations), require significant assistance in basic life activities. Kaye and associates estimate that about 16% of people over age 65 require assistance with their activities of daily living ("ADL"), such as bathing, dressing, and feeding oneself, and/or the instrumental activities of daily living ("IADL"), including household chores, handling money, and shopping.2 Among the working-age population (ages 18-64), the personal assistance rate rose by 35% during the 1980s to 2.7 percent in 1993.3 Because both the working-age and

elderly disabled populations are growing rapidly, the number of people who require such services is increasing dramatically.

Most people who require long-term care services live in families with very limited income, and receive their personal care under the "informal support model," in which uncompensated services are provided by family members and friends.4 One study estimates that over 27 million people served as informal caregivers in 1997, providing the economic value of $196 billion in uncompensated services.5 Such caregivers often must forego economic and personal opportunities due to these responsibilities, and some develop health problems as a result of the physical and emotional burdens.6 Critics of the informal support model often say that it results in an unhealthy dependence of people with disabilities on family members, and resentment by the family members who are not able to pursue their interests.7

The vast majority of funded long-term care services in this country are provided under the "medical model," in which health care workers provide services under the supervision of physicians and nurses.8 The largest sources of financing for U.S. longterm care are the federal Medicaid program and patient out-of-pocket spending, and the majority of such funding is spent on nursing home and home health services under the medical model.9 Due to the substantial financial burden imposed on patients who have too many assets to qualify for Medicaid but not enough to pay the enormous costs of institutional long-term care, many of these individuals impoverish themselves until they spend down sufficient assets to become Medicaid-eligible.10

One long-term care option that is growing in popularity, particularly among working-age individuals with disabilities and chronic conditions," is consumer-- directed personal assistance services under the independent living model of long-term care.12 Under this model, individuals receive services in their homes from one or more personal assistants who are not trained as health care workers or supervised by

health care professionals.13 Typically, the consumer advertises for assistants in a local newspaper, interviews them, and informs them of the requirements and benefits of the position. The individual receiving the service is considered an autonomous, self-directed consumer (rather than a patient), who hires, trains, supervises and, if necessary, fires his or her personal assistant(s). This independent living model, which gives consumers substantial control over their personal assistance services, may be contrasted with the medical model and the informal support model in which others often control the timing and manner in which services are provided. …

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