ABOUT THIS SERIES
Voices from the Community shape our work and inform how we serve our mission. The insights shared by researchers, clinicians, community leaders, and people with lived experience across the world of SCI are worth sharing. This quarterly addition to our communications makes space to connect those perspectives and share what is inspiring our work.
Your work focuses on how disability and accommodation needs are communicated in primary care. What are some needs that may not be obvious to a care team, but can make a big difference in whether a visit goes well?
“Primary care teams often do not learn about a patient’s accommodation needs until the person arrives for an appointment, making physical accessibility, including accessible clinic spaces and adaptive medical equipment, essential for care. Beyond these basic accessibility features, reliable transfer assistance can significantly improve independence, autonomy, and confidence in care for people with spinal cord injury, allowing them to attend visits without a caregiver and receive more thorough examinations. It requires not only appropriate equipment but also staff trained in safe transfer techniques and proper positioning for SCI, helping patients maintain function, prevent pressure injuries, and preserve their independence.”
— Carol H.
Northwestern University
Your work brings together people with SCI, healthcare providers, and health system staff. Has anything surprised you about the conversations between those groups?
“Healthcare providers and staff share a common belief with people with SCI that asking about disability is important and can benefit everyone involved in care. However, healthcare providers sometimes lack confidence to ask about disability – especially when the disability is not visible. Additionally, there can be disagreement about who has the “right” knowledge to determine what accommodations are necessary for a clinical visit. People with SCI have expertise in their bodies and functions, while clinicians have expertise in what specific visits or procedures may involve.”
— Carol H.
Northwestern University
What is one barrier your participants still run into that other community organizations could help reduce through better planning, partnerships, or program design?
“Affordable, locally-sourced Personal Care Assistance (PCA) remains a major barrier for artists traveling to us from other parts of the country. Non-medical support is relatively easy to identify, but more invasive daily living tasks, including catheter use and bowel programs, typically require hiring a nurse directly, at a significantly higher cost than standard PCA rates. It also requires our organization, which doesn’t specialize in medical care, to obtain liability insurance that is both expensive and difficult to secure. This is an area where partnerships with organizations that do specialize in medical/home care, or have existing insurance infrastructure, could make a real difference for arts organizations trying to host artists who need this kind of support.”
— Toccarra T.
Santa Fe Art Institute