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People with disabilities who receive services in their homes or in their communities are a diverse group. They may have developmental disabilities, physical disabilities or mental health disabilities. They may be old or young; verbal or nonverbal. But researcher Sara Karon, PhD, believes they all have one thing in common: like anyone, they want to live the fullest life possible. Karon has spent decades developing quality-of-life measures for people with disabilities and is leading a project at the Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan AbilityLab. The goal is to develop new person-centered quality-of-life measures to assess whether the recipients of home- and community-based services (HCBS) are being well supported and making progress toward their life goals.
The work is part of a five-year, $4.4 million grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) that was awarded to CROR in September. The project will build on current knowledge “to identify the most promising approaches to using data to support high-quality, non-medical, person-centered HCBS,” according to the grant proposal. The new measures should improve the quality of services being delivered and also help guide future policy making in the area of HCBS. (See related story)
As a first step, Karon and other CROR researchers are setting up a Participant Council that will include two individuals in each of four different categories of disabilities: physical, developmental, mental health and age-related. Many of the participants will have used home- and community-based services in the past or are currently using them. The council also will have representatives from disability advocacy organizations that take a person-centered approach to their work. Meetings of the advisory group will be virtual for the first year because of COVID-19.
Everyone should have input into how they want to live
Sara Karon, PhD
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There are already more than 130 sets of measures that include some questions about quality-of-life issues for people with disabilities. Participant Council members will be asked to identify gaps in those and highlight the outcomes that are most important to them. High-quality services are defined as those that support people in achieving the life they want. “Everyone should have input into how they want to live,” says Karon. “Often, people with disabilities aren’t given that or even know that they can expect it.”
Karon expects that the new measures will be more focused on intermediate steps that show whether someone is making progress toward their goals. “Many current measures focus on final outcomes. But it can take time to achieve desired outcomes – time to complete an education, find a new job or engage in new activities. These measures will look more at the process and the progress, linking the support that people are getting with achievement of outcomes,” Karon says. “We will go beyond asking people if they are happy. We also will be asking participants what things are important to them, and how the measures can be useful to them. Often, measures are reported to the funder of the services but they need to be meaningful to the person, too.”
The council will be chaired by Renee Manfredi, a person on the autism spectrum who is a vocal advocate for people with disabilities. “We will be offering advice on whether their ideas will work or not because we are the ones who have to live with them,” says Manfredi, 35, who lives and works in Hawaii. “It will be up to us to say, ‘We really don’t understand this. Could you simplify?’ Or ‘We don’t think this is a good idea’ or “This is a great idea. Let’s put it into action.’ Nobody knows better than we do what we need.”
We will be offering advice on whether their ideas will work or not because we are the ones who have to live with them
Renee Manfredi
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Manfredi has extensive experience as a public speaker and committee member through her roles as a Sargent Shriver International Global Messenger, a board member of Special Olympics Hawaii and a member of the Hawaii Self-Advocacy Advisory Council. She is also part of the National Association of Councils on Developmental Disabilities’ Self-Advocacy Leadership Circle. Through her various roles, Manfredi attends multiple Zoom meetings a week and is comfortable running them. During the Participant Council meetings, she will have a personal assistant who will provide support.
Members of the Participant Council also will provide direction about the least intrusive ways to collect information for the measures from the participants’ point of view, and how the measures can be useful to the participants. The researchers are also eager to hear how they might use that information in their lives. Karon is hoping that after six or seven months, the researchers will have new measures that are far enough along to be tested.
Karon expects there will be some overlap with previous work that she did for the State of Wisconsin. There she developed methods to measure personal experience outcomes for people with physical, developmental or age-related disabilities who were receiving Medicaid-funded HCBS or were in long-term managed care programs. The work identified a dozen domains of outcomes that were important to service recipients including “I decide where and with whom I live,” and “I decide how to spend my day.” Within each domain, people defined the specific outcomes that were important to them. Quality was measured as making progress toward or achieving the desired outcomes and receiving the necessary supports for those outcomes.
“Because of the work I’ve done, I’d be surprised if we don’t end up somewhere similar, but I’m working hard not to impose that,” says Karon. “I don’t want to come to this with any preconceptions.”