A day-long summit, “A Call to Conscience: Advancing Inclusion for Adults with Disabilities who have Significant Support Needs,” at the George Washington University (GW), brought together people with disabilities, family members, advocates, health care professionals, educators and policymakers to confront the barriers that continue to limit inclusion for adults with significant support needs. Held on the 36th anniversary of the Americans with Disabilities Act, the event underscored both how much has changed since the landmark law took effect, as well as how much work remains to ensure that rights guaranteed on paper translate into meaningful choices and opportunities in daily life.
The event organized by Specially Adapted Resource Centers (SPARC), in partnership with the GW School of Medicine and Health Sciences’ Biomedical Informatics Center examined the barriers that still shape where people can live, work, receive care and belong.
“This summit started as a dream,” said Ellen Dyke, chair of the Board of SPARC. “It’s a hope that our family members, our friends and neighbors who need one-on-one support for every part of daily life will finally be seen. Your presence says every life matters. No one is invisible.”
SPARC serves adults with severe and multiple disabilities after they age out of the K-12 system, a transition that can leave many people and their families navigating a patchwork of services and waiting lists.
Sen. Tim Kaine delivered the day’s keynote, while Rep. James Walkinshaw (D-Va.-11) discussed the moral and economic case for inclusion. The program also featured two fireside conversations and three panel discussions, including two featuring GW faculty members.
In support of the day’s events, the Biomedical Informatics Center helped organize CME credits for attendees and the call for posters, and authored a white paper, “A Call to Action to Address Research Gaps Impacting People with Severe and Multiple Disabilities,” intended to advance scholarship on the issue.
The fight to protect progress
Sen. Tim Kaine (D–VA) opened his keynote by tracing his work on disability rights back to his first years as a lawyer in Richmond. For 17 years, he represented people facing discrimination in housing, including cases involving disability. He also helped rewrite Virginia’s Fair Housing Law to strengthen protections for people with disabilities.
That work, Kaine said, shaped his approach in the Senate. But he told the audience that protections built over decades are facing new pressure.
He pointed to Medicaid cuts already affecting communities in Virginia, even before many of the reductions take effect. Rural clinics have closed. School-based health clinics have lost funding. In Farmville, Virginia, he said, a hospital recently closed its labor and delivery ward, meaning some women now have to travel to Lynchburg or farther for care.
Kaine focused on the effort to dismantle the Department of Education and move the Individuals with Disabilities Education Act to the Department of Health and Human Services. He said he is working on both sides of the aisle to keep special education within the Education Department.
“There was a bill that could have facilitated this transfer of the special ed portfolio within DOE to HHS,” Kaine said. “I have gotten two Republican members to co-sponsor with me an amendment that requires that special ed ... all have to stay within the DOE, and they can’t be transferred anywhere else.”
For Kaine, the fight is bigger than any single bill. He urged the audience to keep pushing, even when progress is slow or setbacks come.
He closed by noting the progress Virginia has made during his lifetime, saying the commonwealth has moved from the bottom quarter in per-capita income to the top quarter as barriers based on race, gender, and where people were born came down.
“We have to counter it by being even louder in our messages of inclusion and equality,” Kaine said. For him, that means continuing the work with persistence, even when the outcome is uncertain.
Seeing the whole person
“Traditionally, medicine [and medical education] is set up around diseases,” said Kevin O’Connor, DO, during the panel “Barriers to Equitable Health Care Access.”
O’Connor, who is an adjunct professor of medicine at GW SMHS and was recently selected to serve as the president and CEO of the National Board of Osteopathic Medical Examiners, described a health care system organized around specialties, where patients may see separate doctors for different conditions while other parts of their lives — transportation, employment, family and community — remain outside the conversation.
“We’re more than a collection of our diseases” is not merely a matter of philosophy, he argued. A fragmented system can make it harder for people with significant support needs to navigate care and get the services they need.
Although the problem, O’Connor said, is not intentional, health care and medical training have been built around these divisions for generations. But he pointed to changes in medical education that are beginning to teach future clinicians to understand the larger systems surrounding their patients.
In the day’s third panel, “Reforms, Innovations and Bold Imagination – Designing a Future that Includes Us,” Qing Zeng, PhD, professor of clinical research and leadership at GW SMHS, and director of GW’s Biomedical Informatics Center, discussed how AI-assisted communication and creative approaches can expand autonomy and expression for people with severe and multiple disabilities.
“AI can be used for good,” she said, pointing to AI-assisted communications and creative modalities, like art, music, and movement, expanding autonomy, expression, and connection for people with disabilities.
Zeng noted a project she worked on an NIH-funded project with SPARC called “Art and AI,” part of the under the AIM-AHEAD program, that exposed her up to the world of adults with severe and multiple disabilities. With her help, SPARC patients used generative AI technology to create music, draw, and make 3D printed sculptures as a means of expressing themselves.
“I was so amazed throughout this process,” she said. “They had so much they want to express. I was just blown away by the paintings they created, by the songs they generated, by what ideas they have.”
Using this kind of accessibility as a baseline, Zeng asked, “how do we use AI to make the world more accessible to everyone? … How do we provide an environment or create a community that produces resilience?”
“One thing I learned working with those with lived experience,” she said, is that “we can actually make a technology, which is not necessarily designed for those who live with disabilities, do something that is good beyond our imagination.”
Zeng also argued that researchers first need to make adults with disabilities more visible in the data used to study health and services.
“That needs to be done through data. [If] we can’t identify this population in data, then there are no studies to show what intervention can do for this population.”
The right to an ordinary life
By the time Rep. James Walkinshaw took the microphone, the day had moved from policy discussions to a question that sounded simpler: What does it take for people with significant disabilities to live ordinary lives in their own communities?
Walkinshaw, who represents Virginia’s 11th Congressional District, began with stories he heard while serving on the Fairfax County Board of Supervisors. Families did not call his office to discuss Medicaid statistics, he said. They called about a daughter who had aged out of school services, a brother who had spent 11 years on a waiver waiting list, or a direct support professional who left for a job paying a few dollars more an hour.
“Because the other side of this debate deals in numbers. But here we're dealing in names and stories and lives impacted,” Walkinshaw said.
He connected those stories to the 1999 Supreme Court decision in Olmstead v. L.C., which held that unjustified segregation of people with disabilities is discrimination under the Americans with Disabilities Act. The decision helped establish community living as a civil rights issue, but Walkinshaw warned that the promise is only meaningful if people have the services to make it possible.
“If Olmstead is the promise, the Medicaid home and community-based services are the machinery, the implementation of that promise,” he said.
Those services can pay for a personal care aide, transportation or respite for a caregiver. Medicaid, he said, does not guarantee access to home and community-based services in the same way it guarantees institutional care. When states face budget pressure, Walkinshaw said, waiver slots can be frozen, waiting lists can grow and provider rates can be squeezed.
Walkinshaw pledged to fight for restored Medicaid funding, higher wages for direct support professionals and protections against work requirements that could put coverage at risk.
His argument was not limited to civil rights. Home- and Community-Based Services, he said, also supports local economies by creating jobs that cannot be outsourced and helping family caregivers remain in the workforce.
He ended with the story of Lois Curtis, one of the women whose case led to the Olmstead decision. After successfully fighting to leave a state-mental health institution to move to a community-based program, Curtis went on to paint, work, and built friendships in her community.
“That’s what we’re defending here today,” Walkinshaw said. “We’re defending and fighting for the right to an ordinary life that many of us take for granted.”
