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.


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.(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. 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.(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,(11) 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.(14)

Despite significant benefits in terms of consumer autonomy, satisfaction, and improved health and function,(15) 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.(16) 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),(17) section 504 of the Rehabilitation Act of 1973 ("the Rehabilitation Act"),(18) and the Americans with Disabilities Act of 1990 (ADA).(19) This article considers these most integrated setting statutory provisions, their interpretation in the Supreme Court decision of Olmstead v. L.C. ex rel. Zimring,(20) 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.(21) 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.


Access to personal assistance services is a key lifestyle issue for about 13 million Americans with functional limitations: 57% over age 65, 40% working-age, and 3% children.(22) Achieving such access may be conceptualized as a fundamental issue of long-term care policy, in that personal assistance is the essential long-term care need of this population.(23) Access to consumer-directed personal assistance services is also one of the foundational policy issues of the independent living movement, in which disability rights advocates have struggled for the past three decades to empower people with disabilities to live independently in their communities, rather than in institutions.(24)

Traditionally, to the extent that people with disabilities were able to receive long-term care services in their homes and communities, these services were provided under the informal support model or the medical model.(25) The significance of the informal support model is underscored by the 27 million informal caregivers providing services to their family members and friends who require personal assistance.(26) Although individuals who receive their long-term care under this model are fortunate to have a relatively stable source of care in their homes, many are concerned about the stress this model places on their caregivers and their relationships with these individuals, and many must subvert their care preferences to the wills and schedules of their caregivers.(27)

Until recently, almost all personal assistance services provided through government programs have been organized under the medical model, sometimes called the agency model.(28) This model has the following features: (1) care delivered through a provider agency by caregivers who are supervised by medical professionals; (2) case management to coordinate services; and (3) public regulation of providers to assure quality.(29) Under this model, case managers or other professional staff members of the agency often make service delivery decisions.(30) Critics of the medical model contend that it has significant shortcomings, particularly with regard to diminished control by disabled individuals over their lives.(31)

The independent living model of long-term care has become the model of choice by many working-age people with disabilities.(32) Under this model, the individual is considered a self-directed consumer of services, not a patient. The model is intended to allow informed consumers to assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services.(33) Personal assistants are trained and supervised by consumers, not health care professionals. Proponents argue that consumer-directed personal assistance services provided under the independent living model improve outcomes, including consumer satisfaction and quality of care.(34) There is evidence that such services have a positive effect on the health and functional capacity of people with disabilities.(35) The way in which such services are financed and provided can have an important impact on employability and self-sufficiency.(36)

Interest in the independent living model is rising in this country for reasons concerning the ethical imperative of autonomy and the political-economic imperative of cost containment. Individuals want to retain control over their lives under all circumstances, including when they become disabled, and there is a strong trend in law and bioethics supporting the desire for autonomy. Federal and state government officials have limited options that are politically feasible, and must seek cost-effective approaches to meet the long-term care needs of a growing disabled population. A growing number of states use the federal Medicaid program and/or state funds to offer long-term care in a manner that permits consumer direction.(37) Similarly, several European countries, including Holland, Germany, and Austria, have adopted the concept of consumer direction.(38) The Clinton Administration, as well as several researchers and advocates, have proposed or supported the establishment of a national personal assistance services program or policy under the independent living model in this country.(39)

Critics of the independent living model contend that quality of care will suffer, the number of people applying for benefits will increase dramatically, and frail consumers will have difficulty in resolving the myriad of issues that come with managing one's own care. Some of these appear to be exaggerated concerns raised by health care providers who are threatened economically by the independent living model. Some criticisms of the model are unfair, in that they do not recognize that the other models have similar shortcomings. For example, while it is true that abuse can occur under the independent living model, it is also true that extensive abuse has been documented under the informal support and medical models.(40)

Other criticisms of the independent living model are fair to the extent that it is true that the independent living model is not for everybody; it works best for those who are willing and able to assert control over their lives in the management of a complex consumer-provider relationship.(41) Also, in establishing a personal assistance program providing expanded access to the independent living model, we must be very careful about the so-called "woodwork effect," whereby large numbers of consumers receiving care under the informal support model would "come out of the woodwork" to demand paid services under the new program. Certainly, recent data indicating the large number of individuals receiving unpaid services from family members should give us some pause in this regard.(42)


Traditionally, the states have been involved heavily in providing long-term health care services for people with certain disabilities, such as mental illness and mental retardation.(43) Their involvement increased dramatically in 1965 with the establishment of Medicaid, the federal-state program financing health care services for certain indigent populations.(44) Medicaid is the most expensive budget item for most states, and long-term care is the single largest state health care cost.(45) In 1998, Medicaid financed about 40% of the nation's total long-term care spending of $150 billion.(46) As such, it is the single largest payor of long-term care in this country.


When it was established initially, Medicaid covered long-term care based exclusively on the medical model through services provided primarily in institutions.(47) The medical model continues to dominate Medicaid long-term care today in terms of actual expenditures. In 1998, nursing home care comprised 44% of Medicaid spending.(48) Of the $50 billion spent on Medicaid long-term care in 1995, $40 billion was allocated to nursing homes and intermediate care facilities for the mentally retarded.(49) Despite substantial political pressure by disability rights advocates, the traditional bias in favor of institutionalized long-term care has been retained. However, there also has been a dramatic change in Medicaid long-term care policy over time with increasing use of home and community-based long-term care services and increasing emphasis on consumer direction.(50) Initially, states provided such services as mandatory home health services or optional personal care services under the traditional Medicaid program.(51)

Despite substantial growth in this area, only 10% of Medicaid long-term care expenditures for the elderly were for home care in 1995.(52) Moreover, there is great variation among the states in their use of home care. The states of California, Massachusetts, New York, and Texas, whose residents constitute about 33% of elderly Medicaid recipients in the country, accounted for 60% of national Medicaid home care expenditures for the elderly.(53) The majority of this home care is provided under the medical model by home health agencies and other health care providers.


The greatest evolutionary change toward the independent living model of long-term care occurred in 1981. That year, Congress enacted section 1915(c) of the Social Security Act, establishing the optional Home and Community-Based Care Waiver Program, which allows states to deviate from the traditional rigid federal requirements of the Medicaid program. …

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