Toward a National Personal Assistance Program: The Independent Living Model of Long-Term Care for Persons with Disabilities

Abstract

Long-term care for people with disabilities in this country traditionally has been provided through family members and friends. Federal and state policy has focused primarily on financing professional health care services provided through nursing homes and home health agencies. An alternative to these models of long-term care is the “independent living model,” which is based on the provision of services by nonprofessional personal assistants in the disabled person's home. We describe the model and consider why it is not the dominant approach to long-term care in the United States. We go on to assess options for developing a national personal assistance services program based on the independent living framework, discussing how covered services should be defined, how the program should be financed, whether the program should use means testing, bow eligibility and level of benefits should be determined, and what role government should play in implementing the program. Several legislative approaches to developing a national program are explored.