Lillie Brannon, an 80-year old former cotton picker in Arkansas, tells of how she escaped from a nursing home four times. In describing why she chose to manage her own personal care supports and services (also called self-direction, participant direction or consumer direction) she quickly answered: “I’m the boss. If I want to hang my laundry in the kitchen, that’s what we do. If I want my eggs cooked a certain way, that’s what I get.” Although Lillie was not able to get out of bed, she volunteered to coach people who were trying to decide if this option was good for them. For Lillie, it was important to have some control over her life.
Kevin J. Mahoney; Aug. 26, 2015
More than 800,000 people across the United States direct their own long-term services and supports today—many through a managed care service delivery system. For some, this means hiring and managing their own workers. They can hire people who care about them as individuals; in 17 states they can even hire close family members who may have had to leave their jobs. This employer authority can be transformative in areas where there are worker shortages as it brings new people into the workforce. This is particularly beneficial in rural areas.
Some people have further opportunities for self-direction; they can control the budget for their services and supports, or individual budget authority. In addition to hiring their own workers, they can use these funds to make their homes more accessible or to purchase assistive devices that help them maintain their independence in their homes and communities.
But for me, it’s the stories, like Lillie’s above, that help me understand what self-directed services and supports are and why self-direction is such an important option.
For example, one Veteran with Amyotrophic Lateral Sclerosis (ALS) shared that, prior to self-direction, he sat in a chair all day for a year and began hallucinating. Now that he is in charge of his own services and supports, his worker can take him out to see friends and even go to an ALS support group.
For this Veteran, it is the flexibility of the option that means a lot. He can use his budget to match his life. “I feel like a person again,” he said.
There was a care manager in rural Minnesota who, in the beginning, was not a fan of self-direction. But she was working with an older man who was fading away and she needed to try something different. Once this man was able to hire his own worker he was then able to get the food he liked, so he started eating. Perhaps more importantly, the worker drove him to the grocery store to choose his favorite foods, which was 24 miles away and situated next to the nursing home where his wife lived. He had not seen his wife in months and was now able to visit her regularly.
The case manager said: “In the beginning, I thought of self-direction as rugged individualism but I came to see how it could help bring the person back into a community.”
In the beginning, some worried self-direction would lead to abuse or poor quality of care. With funding from the Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services, self-direction was tested in a randomized, controlled experiment with 6,700 people in Arkansas, New Jersey and Florida.
The results were strong.
Self-directed options increase access to services, satisfaction with discrete aspects of care and overall life satisfaction, while reducing unmet needs and maintaining or improving health outcomes. Over a three-year period, the Arkansans who managed their own budgets had an 18 percent reduction in nursing home usage compared to the control group. These same studies showed family caregivers experienced fewer physical, financial and emotional strains.
No wonder the 2008 Commonwealth Fund Opinion Leaders Survey found 61 percent of the 1,147 leaders surveyed responded favoring expansion of self-direction efforts as a strategy for reforming publicly-funded services.
A number of factors will affect the future growth of self-direction; these are discussed in more detail in my article entitled, “The Future of Participant Direction in Aging Services.” I will mention a few here:
Baby Boomers Want Choice: A 2006 AARP survey asked a representative group of members older than age 50 how they would like to receive services if, in the future, they needed assistance with activities of daily living. Of the respondents, 75 percent preferred managing for themselves instead of receiving care from agencies.
One Size Cannot Fit All: According to the U.S. Census Bureau, between 2010 and 2050 the older-than-65 cohort in four ethnic groups is expected to grow from 20 to 42 percent. Self-direction allows individuals and families to tailor supports to their own cultures and preferences.
Incentives in the Affordable Care Act: Section 2402(a) of the Patient Protection and Affordable Care Act of 2010 called on the Secretary of the U.S. Department of Health and Human Services to develop a common framework establishing principles and process elements supporting self-direction across the whole department and all of it programs. These guidelines for person-centered planning and self-direction came out in summer 2014.
The Potential Re-medicalization of Long-term Services and Supports: Current efforts to integrate acute care, behavioral health and long-term services and supports emphasize professional care management. Unless attention is focused on how self-direction can work in this environment, recent gains could be lost.
Re-training of Professional Staff: Many care managers grew up in the “professional knows best” era. But a recent study of social workers employed in the aging and disability network found that many felt unprepared for this new era of self-direction. In fact, they listed training in this area as one of their greatest needs. With funding from the New York Community Trust, the Council of Social Work Education and the National Resource Center on Participant-Directed Services, we are working with nine social work programs around the country to develop models for infusing the participant-direction approach into social work education. Next we need to look at cross-disciplinary training needs.
Broadening the Scope of Self-Direction: The self-directed model is being tested in the behavioral health arena allowing people to develop budgets to meet their recovery goals. Initial tests have proven successful, and the Robert Wood Johnson Foundation, in conjunction with the U.S. Substance Abuse and Mental Health Services Administration and the New York State Health Foundation, is funding a six-state demonstration and evaluation of this approach by Boston College.
So what happens next?
More and more states are turning to managed care as the way to deliver long-term services and supports. The National Resource Center for Participant-Directed Services has published a number of reports on how this is working. But clearly, some managed care entities are trying to lead the way in developing best and promising practices in this area.
As managed care entities will be the ones delivering most of this support across the nation, these pioneering efforts are vital. So are citizen advisory committees to help in the development, implementation and ongoing evaluation of these efforts.
Let me end by mentioning recent model legislation in Massachusetts called the Real Lives bill (H.B. 984, an Act to Ensure Responsibility, Cost Effectiveness and Meaningful Lives for Individuals with Disabilities). I believe this is one of the best pieces of legislation in the nation. Not only does this legislation require that every time someone with developmental disabilities is assessed or re-assessed they must have the option to manage their own budgets (with assistance from a representative as needed), but this legislation goes further. It establishes a citizens’ advisory group which approves of all outreach materials describing the option and setting quality indicators and data requirements allowing for continuous quality improvement.
There is another personal reason I appreciate this new Massachusetts legislation: I have worked on developing and testing the self-directed option for 20 years, but the community forum opening enrollment for Real Lives was the first time I ever got to present with my 30-year old son.
I can’t tell you how proud I was to hear him speak of how he uses his budget for employment supports. To hear him say how this has changed his life will be one of the moments I will remember for the rest of my life.
Kevin J. Mahoney, Ph.D., is the founding director of the National Resource Center for Participant-Directed Services (NRCPDS) and leads the center’s efforts to expand self-direction opportunities in behavioral health. Dr. Mahoney also is a professor at the Boston College School of Social Work. During a 30-year career in gerontology and long-term care, he has held many policy-making and administrative positions in the state governments of Connecticut and California. He also has held academic appointments at Yale University, the University of Connecticut, the University of California-San Francisco and the University of Maryland. He also is a member of the National Advisory Board on Improving Health Care Services for Older Adults and People with Disabilities.
From 1996 to 2008, Dr. Mahoney was the national program director for the Cash & Counseling Demonstration and Evaluation, a policy-driven evaluation of one of the most unfettered forms of self-direction of personal-assistance services. An expert on state government and long-term care innovation, he speaks and writes extensively on self-direction, the roles of the public and private sectors in financing long-term care, long-term care insurance and care management.
This post is based on an article entitled, “The Future of Participant Direction in Aging Services,” first published in Generations, a journal of the American Society on Aging.
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