It’s common for people with disabilities to have trouble accessing health care, but this problem is often overlooked. These challenges can affect people as they move from pediatric to adult care, and also as they age. I’ve seen how disability and health intersect, both in my academic studies while earning a Master of Public Health from the University of Georgia, and through my own lived experiences as a person with disabilities. I now work at an organization that values promoting equity and access to proper care for people with disabilities.  

The Independent Living Resource Center, a disability services and advocacy nonprofit organization, recently released the results of its online public health survey. As the nonprofit’s public health specialist, I created the anonymous questionnaire for people with disabilities and older adults to discuss their experiences accessing care in Santa Barbara, San Luis Obispo and Ventura counties. Participants shared responses between January and November 2023. Topics addressed interactions with health care providers, insurance and other benefits, access to resources, and general thoughts. 

A total of 86 people participated in the survey. When asked to rank satisfaction on a scale of 1 to 5, most respondents selected 3, 4, or 5. These choices indicate most people feel their needs are generally met. However, in the comments sections, feedback brought up various issues. The main concerns included:

• Having their needs overlooked by professionals such as physicians, insurance providers and resource staff. Participants also said enrolling and scheduling appointments is often complex and time-consuming. 

• Unaffordable, scarce or inaccessible caregiving, housing and transportation services, especially in rural areas.  Also, few services extended beyond county boundaries.  

• Services typically do not consider whole-person care and social determinants of health, like safety, education and social support.   

Calls to action

The survey findings point to a need for more awareness, training and policies focused on improving access to health care and other resources for older adults and people with disabilities. Similar challenges affect people with disabilities across the United States, and have prompted federal government agencies like the National Institutes of Health and the Department of Health and Human Services to center more research and initiatives on addressing this widespread concern. 

On a local level, patients can advocate for themselves when speaking with professionals, such as by highlighting the reasons for their visit and asking clarifying questions. Service professionals can learn more about of disability competency and allow for more creative support tailored to meet the needs of each client. Finally, legislators can host town halls to share updates and get feedback from their constituents about issues affecting people with disabilities in their communities. The comments could serve as the blueprints for new laws and programs to improve equity and access.  

Emily Bridges is a public health specialist with the Independent Living Resource Center, which promotes independent living and full access for individuals with disabilities.