Changing role of the consumer in long-term care

For many years, people who needed long-term care were served in institutions. Not until the early 1980s did Medicaid, the nation's primary source of payment for long-term care, begin to authorize the delivery of home and community-based services (HCBS): a change that came in the wake of the disability rights movement. While there still is much progress to be made, the growth in the percentage of Medicaid funding going to HCBS, rather than institutions, has doubled over the past 10 years – albeit with significant variation among the states.

However, even these HCBS traditionally were delivered in a “case management” model, in which beneficiaries had restricted choices as to the provider, type, and timing of services. In response to advocacy by consumers and innovative pilot programs, the use of “consumer directed” HCBS has grown and, today, nearly all states have at least some such options for people who need long-term care.

This presentation will describe not only these changes in the direction of public policy, but also the American Association for Retired Persons (AARP) evolution in its advocacy for long-term care.