Person-Centered Planning Central to Supporting People with Intellectual Disabilities to Lead Full Lives

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For the first half of the 20^th century, parents of U.S. children with intellectual and developmental difficulties faced a stark choice: institutionalize their children or keep them at home without the benefit of any taxpayer-funded services or supports. That began to change in the late 1960s with a movement to close institutions and move residents into community-based “group homes” of people with similar conditions. By the 1980s, some social scientists and disability advocates were making the case that people with intellectual and developmental disabilities (IDD) should have more say in where and how they lived. Yet when social workers asked people with IDD those questions, the residents were often at a loss.

“The problem we found was that the people we were helping to leave institutions had had such terrible experiences that they didn’t have any coherent vision of what their future life could look like,” says Michael Smull, who founded and heads Support Development Associates (SDA), a consulting and training firm in Annapolis, MD. While he was working for the University of Maryland in the 1980s and 1990s, Smull co-developed a process called Essential Lifestyle Planning. “If we spend time and listen to you, we can learn what matters to you,” Smull says. “We can learn about your positive attributes and how you are best supported so that you have a good day.”

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Other researchers in the disability field were coming up with their own planning processes and acronyms. One of the earliest ones was called Circles of Support. Another was dubbed MAPS. Smull’s work was influenced by ones called Personal Futures Planning and PATH. But at the core, they were all approaches to what came to be called “person-centered planning.” Some of them require the involvement of skilled facilitators but they share common elements: The person with the disability is central to the process and is asked what kind of life they want to live, where they want to live and with whom. Underlying the process is the recognition that people with disabilities deserve the opportunity to make decisions about their own lives so they can lead lives of purpose and meaning.

“It’s about relationships. If we are surrounded by people who like and admire us, we are likely to be healthy and safe. Nobody will be motivated to be healthy and safe unless it’s connected to something people care about,” says Tanya Richmond, a licensed clinical social worker and partner at SDA. “We’re looking for strengths but we never gloss over the real facts of a person’s life. If they are prone to violent outbursts, we need to pay attention to what the person’s behavior is telling us. Are the outbursts due to something they are experiencing in the environment? What can we learn from that? We will need to come up with a plan that includes supports to address that behavior.”

By the 1990s, person-centered planning had gained traction with many state Medicaid providers. They increasingly requested waivers from the federal government that would allow them to use Medicaid funds, half of which come from the federal government, to provide home and community-based services for those with intellectual and developmental disabilities. Developmental disabilities include a range of conditions such as autism spectrum disorders, cerebral palsy, epilepsy and fetal alcohol syndrome, among many others. The Centers for Medicare & Medicaid Services (CMS) began granting more waivers.

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However, some federal regulations made it harder to deliver person-centered services in someone’s home, and the federal government started the lengthy process of revising its rules. That process resulted in a 2014 requirement that anyone receiving services through a Medicaid waiver must have a person-centered plan and that the entity writing the plan has to be separate from the agencies delivering home and community-based services. “Otherwise, if my company delivers the planning and the services, I’d be tempted to define what people want as what I’m already delivering,” Smull says.

In addition to being beneficial to the individuals receiving the home and community-based services, there’s evidence that person-centered planning is better for the social service organizations that provide them. A study of one agency supporting people with IDD found that turnover of staff who had been trained in person-centered thinking skills was reduced by 17%, which saved the agency an estimated $1 million in overtime costs. “They’re happier with their jobs and they’re better matched to the people they support,” says Richmond. “They’re not going to change jobs for an extra 25 cents an hour.” Adds Smull: “When person-centered practices are done well, they save money. When they are done superficially, they don’t. Part of the challenge is that you have to have plans that are written well and implemented well.”

To those outside the disability field, it may sound strange to say that people with moderate to severe intellectual or developmental disabilities should be involved in making their own life decisions. What if their parents take care of them but they want to live independently? What if they want to be in a romantic relationship?

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Everyone, including people with disabilities, has rights, preferences and dreams, Smull points out. “The question is ‘Are the boundaries different for people who use services?’ If you want to go sky diving, the assumption is you are making an informed choice. Someone has explained to you that parachutes don’t always open or that you could break an ankle by landing badly. Even so, the late President Bush was able to go skydiving every year into his 90s by doing tandem dives. Why shouldn’t someone with disabilities be able to do the same thing?”

In actuality, requests to do risky things are the exception, experts say. Most people with developmental disabilities aspire to do the same things that people without disabilities do, like have a job, get around their communities and spend time with friends. Some want to live independently or even have their own home. Sara Karon, PhD, an expert in measuring quality of life for people with disabilities, recalls a woman she met while doing research in a well-run, supportive group home. “She liked it just fine but she wanted her own apartment. She told me, ‘I have a 10-year plan. I need to get a job where I earn money so I can pay rent. I need to be able to read a bus schedule so I can get to my job. I need to learn how to cook.’” Karon doesn’t know if the woman met her milestones but she is hopeful.  “She had a very well-defined plan and it was being supported by her family and the staff at the group home where she was living. That’s what person-centered planning is about."