Person-centered Planning and Participant Decision Making

Abstract

It is a humbling experience to try to capture those critical elements in the Patient Protection and Affordable Care Act (P.L. 111-148) (now more commonly called the Affordable Care Act [ACA]) that have the most import for our profession of social work. I focus my remarks on one theme that is woven throughout health care reform: person-centered planning and participant direction. Whereas that theme appears in both the acute and long-term care portions of the legislation, here I zero in on the provisions dealing with long-term supports and services in the community. Participant-directed services are long-term care services that help people of all ages, across all types of disabilities, to maintain their independence and determine for themselves what mixture of personal care services and supports works best for them. Sometimes these are referred to as consumer-directed or self-directed services. Under the participant-directed model, individuals have control over who helps them with the basic, personal activities of daily living (ADLs) such as bathing, dressing, and getting out of bed (employer authority) and how their funds are used (budget authority). Within the constraints of their budget, they can purchase any combination of goods, services, and human assistance that meets their personal assistance needs and helps them stay independent in the community. If they need help in managing, they can appoint an unpaid family member or friend to be their representative; and they have readily available support services to help them handle bookkeeping, taxpaying, and check-writing responsibilities (financial management services) and to develop person-centered plans, find resources, develop backup plans, meet training needs, and so forth (support broker or counseling services). This approach not only meets present and future needs for flexibility and choice, but also (under the Cash & Counseling demonstration [see http://www. bc.edu/schools/gssw/nrcpds/cash_and_counseling. html]) has proven itself under rigorous comparative effectiveness testing. Here is a summary of what the research, conducted by Mathematica Policy Research, provides: * improved access; * improved quality of care: * increased satisfaction, * reduced unmet needs, and * same or better health outcomes; * caregiver benefits; * controllable costs; and * the potential for reduced nursing facility usage. Clearly, interest in participant direction is increasing. The National Survey of Participant Direction Programs, which Boston College's National Resource Center for Participant-Directed Services (NRCPDS) is completing, shows that all states have at least one program offering employer authority, and 41 states have at least one program with the budget authority option. This movement will only expand. In 2003, AARP's Public Policy Institute released a survey in which they asked a representative group of members (over the age of 50 years) how they would like to receive services if, in the future, they needed help in basic ADLs like bathing, dressing, or getting out of bed (Gibson, 2003). Seventy-five percent indicated that they would prefer managing for themselves over receiving care from agencies. Furthermore, no one needs to remind us of the increasing diversity of our nation's older population. Between 1990 and 2030, elders in four ethnic groups are expected to grow from 14 percent to 25 percent of the over-65 population. Our nation is diverse in terms of race, gender, ethnicity, sexual orientation, functional ability, and cognitive ability, to name but a few dimensions. We need a system that is flexible. Let me repeat, it is clear that one size does not fit all. Participant direction allows individuals and families to tailor supports to their unique needs and preferences. No wonder the 2008 Commonwealth Fund Survey of Long-Term Care Opinion Leaders (Miller, Mor, & Clark, 2008) found that 61 percent of 1,147 leaders responding favored expansion of participant direction efforts like Cash & Counseling as a potential strategy for reform of publically funded services. …