Care Support

United Spinal’s Care Support working group combines advocacy efforts, education and peer support to help wheelchair users navigate their caregiving needs in the face of the ongoing shortage of care workers. Group member Melinda Simms, a C4-7 incomplete quad, started relying on her husband as a care provider when she lost access to her care support team during the pandemic. “We live in a rural area where home care is hard to come by. When [the pandemic] hit, the agency could no longer provide caregivers, since many of them were sick and quarantined,” she says. The Department of Veterans Affairs formally recognized her husband as a PCA and offered him a monthly stipend and health insurance. She has made it a priority to work with other veterans to help connect them to benefits that they may not be aware of.

Now she is sharing the knowledge she’s learned on the job and her personal experiences of working with caregivers. “A lot of times people know their list of things that they should ask [but] they don’t really know why they should ask those things,” says Simms. She collaborated with other advocates to create guides on best practices for hiring and training caregivers.

Simms also joined other advocates, caregivers and health care professionals for United Spinal’s care support webinar. The webinar gave caregivers the opportunity to discuss what they need to provide the right care for their clients. 

Emergency Preparedness

The Emergency Preparedness working group was created in tandem with the organization’s Ready to Roll initiative to address the reality that wheelchair users are often more vulnerable to the effects of natural and man-made disasters. The working group provides information to enable wheelchair users to make informed decisions about their safety, and assists governments and other organizations in proper disability-focused emergency preparedness activities.

The group authored a wildfire preparedness guide that includes tips on evacuations, transportation, loss of power, smoke inhalation, and needed supplies. More recently, it assembled winter-safety guides for wheelchair users. These include the warning signs of frostbite, recommended winter clothing, and tips for preparing your vehicle and wheelchair. “Winter weather is not universal, and knowing how to take care of yourself and what you need to take care of yourself is not universal either,” says Andy Weyant, a C4-5 quad and working group member from New York. “Every one of us should know our needs for our specific situation, and if anything goes wrong, … what we need to do to continue moving forward.”

Accessible Parking

The most popular working group strives to improve accessible parking laws and regulations throughout the U.S., while raising awareness of common barriers encountered by the disability community.

The group aims to bring public attention to the importance of access aisles, the hashed lines next to the accessible spaces that allow room for people with disabilities to get in and out of their vehicles. The group is also gathering documentation on the numbers of parking placards and accessible spaces available in all 50 states.

Once the data is compiled, they will bring it to the U.S. Department of Transportation to ask for increasing the federal requirements on the minimum numbers of accessible spaces. “We’re hoping [that] showing the numbers will really create change. Going about such a big issue is tricky — [you‘ve] got to break it down and have real goals,” says Shelley Jaspering, a C7 quadriplegic and member of United Spinal’s Iowa chapter.