Reimagining Disability Services

Amy Hewitt, director of the Institute on Community Integration, challenged disability professionals to brainstorm bold ideas about community living and inclusion during the 2024 Reinventing Quality conference in Baltimore.

How would disability services be different if they hadn’t started as an alternative to institutions, and what can we do today to make a real difference in the lives of individuals, their families, and communities?

Closing out the 2024 Reinventing Quality conference in Baltimore last month, Institute on Community Integration director Amy Hewitt challenged a diverse panel of disability professionals to brainstorm some bold ideas. Make the wider community, not the disability service sector, responsible for the inclusion of people with disabilities, they said. Use the racial equity and other social justice movements in recent years to reveal the humanness and amplify the voices of people with disabilities. Stop giving lip service to person-centered thinking if your organization doesn’t truly embrace it. Make improvements before regulations demand them.

View a recording of the panel session, Three Decades of Learning About Community Living and Inclusion – Now What? here.

“Without all of us, there would be no system to worry about. We're what makes the system what it is. Therefore, we have the power to change it instead of waiting for the system to regulatorily make the change,” said BJ Stasio, a board director for the Self-Advocacy Association of New York State.

Without the institutional history of disability services, which led to intermediate care facilities and group homes, services would not have been so closely tied to the physical settings where people with disabilities live, said Marian Frattarola-Saulino, executive director Values Into Action , a network of service provider organizations that offer individualized services exclusively in people's homes and communities in New Jersey and Pennsylvania. As a supporter of self-directed services, Frattarola-Saulino believes that people with disabilities and their families should directly control the hiring of support staff and other services, rather than using traditional agencies to provide services.

“I believe every single one of us, simply by being human, is inherently the expert of our own lives,” she said. “Why does that work differently in this system, where external forces very far removed from the actual person are what we focus on? The future, I believe, should be less provider-managed and more about what providers need to look like to authentically engage and contribute to a person’s life as they see it?”

Pointing to a conference session led by representatives of the Plain Truth Project , Syard Evans, chief executive of the Arkansas Support Network , said the future of disability services must focus on individuals’ storytelling and their own narratives, not on classifying their service needs.

“One of the things I’ve been contemplating for years, and it’s really grounded in our research at the University of Minnesota, is that when given the right training and the opportunity and an expectation, the community can produce better outcomes than the disability service system,” Hewitt said, citing the Institute’s work in understanding social relationships and competitive, integrated employment among people with intellectual and/or developmental disabilities (IDD). “We've built this disability service system and simultaneously let the community totally off the hook.”

Attracting support from people who are not currently connected to the disability community will require sharing those personal narratives Evans discussed, said Bryan Boyce, executive director of Cow Tipping Press , a Minneapolis organization that publishes writing by people with IDD.

To really create better lives for people with disabilities, we have to change mindsets outside the disability sector, Boyce said.

“It’s about changing how people who aren’t part of the [disability] system, or who aren’t self-advocates or their families, think about this form of human difference in the first place,” Boyce said. “I don’t think the [current] system is designed to do a lot of external-facing narrative and shifting of mindsets.”

In closing the session, Hewitt thanked the panel for voicing some difficult truths about the state of the disability services field and commended them for taking leadership roles in their communities.

“I think [today’s discussion] is evidence that we’ve grown new leaders and new ideas,” Hewitt said.