Americans More in Control of Their Long-Term Care

By Sondra Forsyth

The provision of long-term care in the U.S. has shifted from what was once a predominantly institutionally based system of care to one in which recipients can increasingly receive a range of both medical and supportive services at home and in the community, according to the latest edition of The Gerontological Society of America’s Public Policy & Aging Report (PP&AR). Not only that, but people have gained the increased ability to choose how, where, and from whom they receive these services.

A release from the society reports that almost 850,000 Americans direct their own care through 270 long-term services and support (LTSS) programs that are generally heralded by those on both sides of the political spectrum. Self-direction is the umbrella term applied to an approach to the delivery of LTSS in which those eligible receive cash payments in place of traditionally delivered services. With these payments, they can decide how best to meet their support needs.

Studies show that self-directed care programs can improve participant well-being, care quality, and cost containment. And as the PP&AR notes, this unique policy innovation become a reality through the promotion, design, implementation, and assessment of a cadre of experts and thought-leaders.

“Self- or participant-directed care has been a model of successful public policy development and implementation — a movement coming from the grass roots and developed through the combined efforts of federal and state governments, philanthropic organizations, professional and advocacy organizations, and committed social and health care researchers,” states PP&AR Editor-in-Chief Robert B. Hudson, PhD, in the issue’s introduction.

The new publication explores the evolution of the self-directed care movement in LTSS, as told by many of the principals who helped to shape and grow it. It examines many of the implementation challenges as self-direction moved from a controlled experiment to a national option, as well as the major changes in the environment that have shaped its development.

Among the expert authors is Kevin Mahoney, PhD, who is currently the director of the National Resource Center for Participant-Directed Services.

“It has been nearly ten years since a major journal devoted a full issue to participant self-direction in long-term supports and services. A lot has happened in that time. It is appropriate that this attention comes as a new administration and Congress debate future directions and priorities.”

A total of seven articles are included, starting with a look at the evolution of participant-directed care in home and community-based services in the U.S. and a review of recent trends in demand and availability. The issue also documents changes in federal legislation, regulation, and practice that have encouraged the growth of self-directed LTSS. Another piece makes international comparisons between programs in Australia, England, Germany, the Netherlands, and the U.S. — and highlights significant differences in terms of eligibility, policy, and process between the approaches taken in each of the countries. The final article focuses on where the field of participant- directed care is likely to go next from its current status in the American health care system.