INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. A Right to Personal Assistance Services: "Most Integrated Setting Appropriate" Requirements and the Independent Living Model of Long-Term Care

Andrew I. Batavia
Reprinted from AMERICAN JOURNAL OF LAW & MEDICINE, Volume 27, Number 1, (2000): pp. 17-43
© 2000 by American Society of Law, Medicine & Ethics and the Boston University School of Law. All rights reserved.


The United States is currently entering a period in which the demand for long-term 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. 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. Among the working-age population (ages 18-64), the personal assistance rate rose by 35% during the 1980s to 2.7 percent in 1993. 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. One study estimates that over 27 million people served as informal caregivers in 1997, providing the economic value of $196 billion in uncompensated services. 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. 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.

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. The largest sources of financing for U.S. long-term 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. 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.

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. 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. 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.

Despite significant benefits in terms of consumer autonomy, satisfaction, and improved health and function, the independent living model is not currently available to many individuals who prefer it. This model is used primarily by people with disabilities who are gainfully employed and who pay for the services out-of-pocket, as well as paralyzed veterans and some Medicaid recipients in states that permit payment for long-term care under this model. Most people with disabilities have no choice but to rely entirely on the informal support model or the medical model. In either case, they often have little control of the services upon which they depend.

One powerful legal requirement that is now being used by some individuals with disabilities to gain access to personal assistance services under the independent living model is that long-term care services must be provided in the "most integrated setting appropriate" to the needs of the consumer. This requirement is contained in three federal statutes that impact long-term care in this country--the Developmentally Disabled Assistance and Bill of Rights Act (DDABRA), section 504 of the Rehabilitation Act of 1973 ("the Rehabilitation Act"), and the Americans with Disabilities Act of 1990 (ADA). This article considers these most integrated setting statutory provisions, their interpretation in the Supreme Court decision of Olmstead v. L.C. ex rel. Zimring, and their use as levers for expanding access to consumer-directed long-term care services under the independent living model.

Section II of this article provides further information on the independent living model of long-term care relevant to analyzing how it is affected by most integrated setting requirements. Section III provides background on the Medicaid program and other sponsors of long-term care, including the Medicaid home and community-based waiver program authorized under section 1915(c) of the Social Security Act. Section IV discusses the relationships between the DDABRA, the Rehabilitation Act, and provision of long-term care in the most integrated setting appropriate. Section V considers the ADA and its most integrated setting requirement. Section VI analyzes the Olmstead decision, which has significant implications for long-term care and personal assistance services. Section VII applies the Olmstead decision to other circumstances involving long-term care, including the care of working-age people with physical disabilities who are on Medicaid. Finally, Section VIII presents conclusions on implications of the analysis concerning the independent living model.

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