By Sharon Lewis, Principal Deputy Administrator of ACL and Senior Advisor on Disability Policy, HHS
On June 6, 2014, the Secretary of Health and Human Services (HHS) issued important guidance on implementing Section 2402(a) of the Affordable Care Act. This provision of the law requires the Secretary to ensure all states develop systems for delivery of home and community-based services and supports (HCBS) that are designed to respond to the changing needs of beneficiaries, maximize independence, support self-direction, and achieve a more consistent and coordinated approach to the administration of policies and procedures across programs providing HCBS.
As a first step in implementing Section 2402(a), the Secretary issued guidance on person-centered planning and self-direction. This information will help states, agencies, providers, people with disabilities, families, and other stakeholders to encourage the development of systems and services that are person-centered and maximize self-direction. That, in turn, will empower people who receive long-term supports and services (LTSS) to reach their goals and achieve a better quality of life.
“Person-centered Planning: What a difference it can make!”
Read Helen’s story.
Person-centered planning is a process directed by the person with LTSS needs. The person-centered planning approach identifies the person’s strengths, goals, preferences, needs (medical and HCBS), and desired outcomes. The role of staff, family, and other team members is to enable and assist the person to identify and access a unique mix of paid and unpaid services to meet their needs, and to provide support during planning and implementation.
When done thoughtfully, person-centered planning creates a space of empowerment—a level playing field—that allows for consideration of personal preferences as well as health and safety needs, without unnecessarily restricting freedoms. The best person-centered planning helps people to live better lives, with support to do the things most important to them.
The life-changing power of Self-directed Services.”
Read Chuck’s story.
In addition to outlining procedures for person-centered planning, the Secretary’s guidance includes standards for self-direction. Self-direction allows the person maximum control over his or her HCBS including the amount, duration, and scope of services and supports, as well as choice of providers, which may include family or friends. It can, in some cases, even allow the person to purchase alternative goods and supports not available in traditional service delivery systems.
While person-centered planning provides the basis for self-directed arrangements, self-direction allows the person to have much greater control over services and supports than would be possible under traditional arrangements. Consistent with the philosophy of independent living, self-direction embraces the values of freedom, authority, autonomy, and responsibility to allow the person to fully participate in community life with the necessary supports.
Secretary’s Guidance on Implementing Section 2402(a) of the Affordable Care Act
The Secretary has asked each agency in HHS to implement these standards on person-centered planning and self-direction as they develop or revise regulations, policies and guidance, provide technical assistance, offer funding opportunities, or take other relevant actions.
ACL is in the process of a developing training program on person-centered counseling for people working in State No-Wrong-Door systems, as well as developing a set of credentialing standards for person-centered planning.
Person-centered planning and self-direction principles will be increasingly embedded in the work we do at ACL and across HHS. Please share the Secretary’s guidance with your stakeholders and with others in the community interested in long-term services and supports. It is a thoughtful and well-written document that clearly describes how affected agencies should incorporate person-centered planning and self-direction in their programs. When implemented, this guidance will help ensure that more Americans can access the support they need in a manner consistent with their preferences.
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Helen, a published poet who lives with her husband, daughter, and two grandchildren, is a woman who values her independence. She takes daily long walks in the woods, tends to her plants, visits with friends, loves old westerns, and takes regular breaks for green tea. However, when Helen began to get lost during her walks, her family grew concerned. They also noticed that she seemed to be forgetting to eat. They called their Area Agency on Aging (AAA) for help.
The AAA sent Jan, a trained person-centered planning facilitator, who guided Helen, her family, and a few close friends through the person-centered planning process. Jan helped each person articulate Helen’s strengths, her values, and how her memory issues were starting to hinder her ability to live the life she wanted to live.
Together, Helen, Jan, and the team came up with strategies to help Helen stay active and eat regularly. Helen’s friends and eldest niece agreed to accompany her on her walks. Each signed up for a different day of the week. Helen liked the idea of having walking companions because she enjoys spending time with her friends and family. She also agreed to visit her primary care doctor. Afterwards, she would meet again with Jan to discuss results and engage in further planning. Jan wrote all this into a plan that included goals and the agreed upon responsibilities for each person. With Helen’s consent, she gave everyone involved in the process a copy.
Without person-centered planning, the outcomes for Helen might have been much different. She might have had to give up her walks, which would have isolated her and made her more sedentary. Over time, that could have led to related health problems and a lower quality of life.
After suffering a spinal cord injury that left him with quadriplegia, Chuck spent five years living with his parents. While he appreciated their support and care, over time he found himself wondering what the purpose of his life was. He realized he wanted more control and the freedom to live independently.
Through a local independent living center, Chuck heard about self-directed services. He decided to give it a try. That decision changed his life.
By self-directing, Chuck was able to begin managing the care he received, including the hiring and firing of personal aids. Chuck now has the authority to replace those staff who are not a good fit with people who better understand his needs. He also trains his personal aids himself, thus tailoring his care to his specific situation. For example, getting out into the community is important to Chuck, so he taught his personal aids how to drive his accessible van. Because he can schedule his help for the times when he most needs it—another aspect of self-direction—Chuck is able to conserve his energy for the activities that he finds most enriching.
Thanks to the independence obtained through self-directed supports and determination, Chuck has achieved several milestones. He earned a bachelor’s degree in English. He now has a good job and is active in his community. And along the way, he got married and purchased a home; Chuck is now the proud father of two children. “Self-direction,” he said, “is the best decision I ever made.”
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Last Modified: 5/27/2016