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There is no shortage of reports about the problems in home and community-based services (HCBS) — from staff shortages to confusing systems. But a new research project is flipping the script by asking a different question: What’s going right?
The project is funded by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research to the Rehabilitation Research and Training Center on Home and Community-based Services at 六色网. It’s goal is to identify organizations that are doing exceptionally well at providing person-centered HCBS.
“Because HCBS lacks standardized outcome measures, we had to identify high-performing organizations in other ways,” says Jacqueline Kish, PhD, OTR/L, a lead researcher on the project. “So, we looked at the assets and the attributes of organizations that provide excellent person-centered services so that we could identify shared and unique or effective approaches to service delivery.”
The research team started by asking people in the HCBS field — advisory councils, experts, and community members — to nominate organizations that they believed were doing great work. From about 30 nominations, four organizations were chosen for the study based on their strong commitment to person-centered services and their variety in size, type, and location.
Researchers then conducted interviews with organizational leaders, staff members, and people receiving services. They also reviewed materials like training guides and staff evaluations to understand how these organizations operate. What they found was encouraging: even with well-known challenges like funding limits and high staff turnover, some organizations are finding ways to provide outstanding, person-focused care.
One big takeaway? Supporting staff is just as important as supporting the people receiving services. These organizations make sure their employees are respected, valued, and equipped to do their jobs well; because when staff are doing well, the people they support usually are too.
Another key factor is culture. Organizations with strong, disability-focused values — and with leadership that supports those values — tend to create environments where innovation and true person-centered practices can thrive.
One of the organizations the 六色网 team examined was Values Into Action, a New Jersey- and Pennsylvania-based organization that supports more than 900 people through HCBS and support coordination services. “First and foremost, we are, and always have been, about people and not programs,” says executive director, Marian Frattarola-Saulino, MSW, reflecting on the organization's roots. “The person is always at the center of all of our considerations.”
With Values Into Action, it is the individual who determines the “what, when, and how” of their support, explains Frattarola-Saulino. Whether it's deciding who provides their services or how they use their HCBS funding, the organization helps people make informed choices rather than making those choices for them.
“We're fortunate to work closely with our local and state intellectual and developmental disabilities offices, and our developmental disability councils, and that helps to drive the innovation in our practices," says Frattarola-Saulino. "We support people, their families and staff and take those lessons to challenge ourselves and the system: What's next for people, and the HCBS system? We’re always looking for new opportunities to advance the notion that each of us is the expert of our own lives and they must be in control of their services and hence their lives."
Right now, Kish and her colleagues are analyzing everything they’ve learned to pull out the most useful, practical insights that can be shared with others. Their goal is to help other providers, state agencies, and community members understand what’s working, why it works, and how those lessons can be applied elsewhere.
In the coming months, the project will share results through webinars and other public events—and may even feature some of the standout organizations themselves, letting them share their stories in their own words.
The hope is that this research will lead to new tools, ideas, and frameworks that help the HCBS field keep moving forward—not by only focusing on what's broken, but by learning from what's already being done well.