Person-centered planning and participant decision making.
Article Type: Viewpoint essay
Subject: Decision-making (Analysis)
Long-term care of the sick (Analysis)
Health care reform (Analysis)
Author: Mahoney, Kevin J.
Pub Date: 08/01/2011
Publication: Name: Health and Social Work Publisher: National Association of Social Workers Audience: Academic; Professional Format: Magazine/Journal Subject: Health; Sociology and social work Copyright: COPYRIGHT 2011 National Association of Social Workers ISSN: 0360-7283
Issue: Date: August, 2011 Source Volume: 36 Source Issue: 3
Geographic: Geographic Scope: United States Geographic Code: 1USA United States
Legal: Statute: Patient Protection and Affordable Care Act
Accession Number: 267421730
Full Text: 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. 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.

Health care reform fueled this paradigm shift. Three provisions in the ACA are especially important to note:

* Section 2402(a) calls on the Secretary of the Department of Health and Human Services to develop a common framework establishing principles and process dements supporting participant direction across the whole department and all of its programs.

* The Community Living Assistance Services and Supports (CLASS) Program establishes a federally administered, voluntary long-term care financing plan to help individuals with functional limitations maintain their independence and live in the community. The very essence of CLASS is a participant-directed cash allowance.

* The ACA also includes a number of reforms expanding Medicaid funding authorities encouraging participant direction, including Community First Choice (Section 1915[k]) and revisions in the 1915(i) authority, as well as Money Follows the Person and a major funding increase for Aging and Disability Resource Centers, which provide options counseling in a person-centered manner.

So, what does all this mean for the social work profession? First, I think we should take a bit of credit. Social work is built on a tradition of empowerment. The current emphasis on participant direction clearly builds from the very set of ideas and principles that Jane Addams pioneered at Hull House. Furthermore, much of the research that laid the foundation for this paradigm shift was led and implemented by social workers. We, at the Boston College Graduate School of Social Work, are very proud of the role we have played over the last 10 years in implementing, evaluating, and refining the participant direction approach. Many of the state project directors, and a substantial percentage of the support brokers, who implemented Cash & Counseling, were and are social workers.

But the paradigm shift from a "professional/ medical" model to an "empowerment/person-centered" approach does not just happen. It requires training for support brokers, care managers, and their supervisors to develop the knowledge and skills needed to support this approach; without such training, participant direction will never become the norm. The necessity of such training becomes obvious when you consider that nearly 75 percent of the care managers who attended a recent nationwide Webinar we ran for the Administration on Aging (AoA) rated themselves as beginners or intermediate when it comes to knowledge about the ins and outs of participant direction. Many care managers in the aging network are doing participant direction, as evidenced by the successful collaboration with the Veterans Administration in implementing Veteran-Directed Home and Community-Based Services (VD-HCBS) programs that provide participant direction for veterans. But the AoA recognizes that to make participant direction the norm, a major training program is needed; such training has been initiated. It is a collaborative, consensus-based process that includes all stakeholders, and it will take time and require commitment and resources.

In the end, the reason for doing this can be found in the profound effect that being more in control of one's life, and being able to fit supports to the rhythm of individual needs, has on people's lives. Let me conclude with words from Frank Zampella, a current participant in the new VD-HCBS program (a fine example of this participant-directed approach). Mr. Zampella--speaking at a conference at the Veterans Medical Center in Lyons, New Jersey, in December 2010--told how he used his budget to move out of a nursing facility and back into his own home. Referring to the new program, he concluded by saying, "It's a godsend. Believe me when I tell you."


Gibson, M.J. (2003). Beyond 50.03: A report to the nation on independent living and disability. Washington, DC: AARP Public Policy Institute.

Miller, E.A., Mor, V., & Clark, M. (2008). The Commonwealth Fund survey of long-term care opinion leaders: Summary report (Contract No. 20060606). Washington, DC:The Commonwealth Fund.

Patient Protection and Affordable Care Act, P.L. 111-148, 124 Stat. 1025 (2010).

Kevin J. Mahoney, PhD, is director, National Resource Center for Participant-Directed Services Professor, Graduate School of Social Work, Boston College, 314 Hammond Street, Chestnut Hill, MA 02467; e-mail:
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