On a Friday morning this fall, a dozen people gathered at Stanford’s disability community space on Salvatierra Walk for coffee and conversation about issues related to IDD, or intellectual and developmental disabilities. The quarterly brunch meetings, hosted by IDD@Stanford, bring those working in the IDD space at Stanford together with community groups, individuals, and families. 

“There was a real need to build connections between Stanford writ large – faculty, staff, students, researchers, individuals with IDD and their caregivers, and the community organizations that serve them,” said Holly Tabor, professor of medicine and director of the Stanford Center for Biomedical Ethics. 

Tabor started the group in 2023 after realizing that while many at Stanford were working with the local IDD community, there wasn’t an established forum for communication among projects and teams. The casual gatherings have had a surprising reach; attendees at the most recent brunch included a member of Amazon’s assistive tech team who had come across the group online, the parent of a local school district student, and interested Stanford undergraduate and graduate students.

This year, with the support of an award from the Office of Community Engagement, the group will focus on addressing the challenges young adults with IDD face related to accessing health care. The project, run by the Stanford hub IDD-Transform in Stanford Medicine’s Center for Biomedical Ethics, will work with community partners to produce free virtual health forums, a continuing medical education event for practitioners, and educational resources for patients created and distributed in collaboration with Special Olympics Northern California, the nonprofit Partners & Advocates for Remarkable Children & Adults (PARCA), and others. 

Transforming the experience of patients with IDD 

Many of the supports and structures in place to support kids and teens with IDD and their families come to an abrupt end when teens become legal adults. 

“My families always worry when a child becomes 18,” said Sue Digre, PARCA’s family services director. “Many 18-year-olds don’t magically become ‘adults’ when they turn 18, and that’s even more the case for intellectually and developmentally disabled teens, who still need many of the services that ended with that key birthday.” 

Accessing health care is among the most significant challenges adults with IDD face, Digre said. A trip to the emergency department, for example, can be a terrifying experience for a patient with IDD, and practitioners may not have adequate training in how to communicate with such patients. Tabor, who is the parent of two young adults with IDD, says she has heard from other parents, including one whose daughter experienced a crisis while trying to access emergency care, about the difficulty of finding doctors who understand how to interact with patients with disabilities. 

David Solo, president and CEO of Special Olympics Northern California, which oversees programs for more than 23,000 athletes with IDD, says addressing their health needs and barriers to care is a big part of the organization's work. Health screenings in nine specialties including vision, podiatry, and pediatrics are held at its Special Olympics events to reach athletes in a welcoming atmosphere and to help train providers in best practices for caring for the IDD population. The annual health assessments are vitally important, Solo said, but people with IDD also need access to traditional primary health care in their communities. 

“There is a desperate need for coordinated engagement and collaboration with the IDD community around health and health disparities, as well as with agencies, physicians, and health care providers who serve IDD patients.” 

The project’s advisory board includes researchers and clinicians, adults with IDD, caregivers, and representatives from community organizations. The participation of those with IDD in the project is critical to its success, said board member Justin Steinberg, a research assistant at the Stanford Center for Bioethics, who has autism. “We often bring up things that are missed … We can help get the focus to where we can do the most good.”