Health Access for Wheelchair Users: Real Experiences and Practical Tips

Insights from the United Spinal Association's Health Access Working Group

Healthcare access remains a daily challenge for people with disabilities. The numbers tell part of the story: one in four adults with disabilities under 45 don't have a regular healthcare provider, and the same number skip needed care because of cost. But behind these statistics are real experiences of navigating a system that often wasn't built with us in mind.

Voices from the Community

Annie Streit, United Spinal's Grassroots Advocacy Manager, shares her experience: "My primary care doctor referred me to a gastroenterologist who was completely honest - he'd never worked with neurogenic bowel and spinal cord injury before. But we immediately had mutual respect for each other, and he's taken the time to research and talk with me to help with my chronic pain."

Morgan, an Occupational Therapist with SCI, points out a common problem: "Many ancillary staff aren't trained on proper handling of patients with spinal cord injury or disability, so things like MRIs, CTs, and bed transfers can be a challenge. Our rehab hospital created training videos on different types of transfers, which other facilities could really benefit from."

Ranae Beeker emphasizes the power of community involvement: "I encourage us as a community of individuals with disabilities to become active in our healthcare community. Hospitals are looking for volunteers in many roles. Share your knowledge, your expertise, and help change your healthcare community from the inside."

Practical Advocacy Tips That Work

Our working group members find that a little preparation can make office visits go much smoother. Here are their suggestions for what to do before, during and after your doctor's visit.

Before Your Appointment

• Come prepared with a written list of concerns and questions
• Research your provider - ask your disability community for recommendations
• Get familiar with online systems like MyChart for easier communication

During Your Visit

• Ask detailed questions about procedures - How do they handle transfers? What does the exam involve? How will they meet your specific needs?
• Be ready to educate - Many providers genuinely want to learn but lack experience
• Work together - Collaborate on what treatments are working or not working

Building Relationships

• Kindness goes a long way - Be friendly with staff and patient with knowledge gaps
• Share resources - Pass along information about disability-specific health needs
• Get on committees - Join Patient Family Advisory Boards to promote awareness of disability rights

The Reality of Barriers We Face

Unfortunately, the struggles to obtain quality health care are real. They range from actual physical obstacles to processes and procedures that might as well be walls.

• Physical barriers go beyond ramps - inaccessible exam tables, scales, and diagnostic equipment create real obstacles to care.
• Communication gaps happen when providers lack sign language interpreters, accessible websites, or alternative formats for information.
• Attitudes and assumptions remain the biggest challenge. Healthcare providers often have limited knowledge about disabilities, leading to inadequate care or discrimination.
• System complexity creates additional hurdles - from transportation challenges to insurance coverage gaps.

Substance Abuse Recovery: A Hidden Crisis

People with disabilities face substance abuse at dramatically higher rates - we're 1.8 times more likely to have alcohol use disorders and 2.7 times more likely to have other substance use disorders compared to the general population. Yet more than half of treatment facilities have turned away patients with traumatic brain injury or spinal cord injury due to physical barriers.

When looking for treatment, talk with intake specialists upfront about accessibility needs. Organizations like the American Association on Health and Disability can help find appropriate facilities.

Mental Health Matters Too

Adults with disabilities report frequent mental distress almost five times more often than adults without disabilities. Too often, physicians focus on physical symptoms while dismissing mental health concerns as just "part of" having a disability.

Questions to ask your primary care provider about mental health:

• Could my physical conditions be impacting my mental health?
• Do you have partnerships with behavioral health specialists?
• Do you know mental health providers experienced with disabilities?
• Is the treatment location accessible?
• Are telehealth options available?

Know Your Rights - They're Your Foundation for Advocacy

Understanding your rights is critical to advocacy efforts for health access. You have the right to access the same medical services as anyone else, along with the right to reasonable modifications, auxiliary aids, and services. Federal laws are in place to protect your rights and prohibit discrimination.

• Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of disability by any programs or activities receiving federal financial assistance. In healthcare settings, this means Section 504 prohibits discrimination by any facilities receiving reimbursement from Medicare or Medicaid - which covers most hospitals, clinics, and healthcare providers.
• Section 1557 of the Affordable Care Act prohibits any healthcare clinician that receives funding from the federal government to refuse to treat an individual, or to otherwise discriminate against an individual based on disability. This law has teeth and applies broadly across the healthcare system.
• The Americans with Disabilities Act of 1990 (ADA) is the federal civil rights law that prohibits discrimination against individuals with disabilities in everyday activities, including medical services. The ADA requires healthcare providers to make reasonable modifications to their policies and provide auxiliary aids when needed.
• ADA Standards for Accessible Design set requirements for new construction and alterations to facilities. Healthcare facilities are expected to remove architectural barriers at existing facilities where barrier removal is feasible and complies with ADA Standards - meaning they can't just say "our building is too old" as an excuse.

Take Action

Self-advocacy starts with understanding your rights and effectively communicating your healthcare needs. You have the right to patient-centered care and better health outcomes, even in complex systems filled with barriers and bias.

Join the movement: United Spinal Association's Health Access Working Group brings together people with disabilities to identify problems and create solutions. Your experience and voice matter in making healthcare truly accessible for everyone.

For crisis support: Call, text, or chat 988 for 24/7 mental health and substance use support.