Quality of Life Spotlight: ​Rochester Spinal Associatio - Reeve Foundation

When the whole world turned its focus to virtual connections at the onset of the pandemic, Chris Hilderbrant wanted to be sure his community stayed supported. As the executive director of the Rochester Spinal Association (RSA) in New York, he knew how difficult isolation could be for people living with a disability.

“RSA is largely peer-focused. We host group meetings and get-togethers and share tips and tricks and information on things like vehicle modifications and doctors in the area,” says Hilderbrant, who lives with a C6 incomplete injury from a diving accident at age 14 in 1990. “We wanted to keep our more than 800 members connected to health and wellness resources.”

RSA offers a variety of supports to people living with spinal cord disabilities, their families and professionals. These supports include information, education, advocacy, peer connections, health and wellness resources, support/social meetings and grants for individuals in need.

To help develop virtual opportunities during the pandemic, Hilderbrant applied for a Christopher & Dana Reeve Foundation Quality of Life grant. He designed a "Keep it Together" program to create social and recreational opportunities, including online support groups, fitness programs and a virtual health fair.

“We wanted to limit the impact of isolation and help people be more social at both SCI events and mainstream community events,” says Hilderbrant. “My hope is that everyone with a SCI will know how to reach us for help.”

The $22,715 Reeve Foundation grant has directly benefited over 100 people through eight RSA programs. Many people also participated in RSA collaborations with other organizations, including adapted fencing and virtual reality gaming. Over 65 people living with spinal cord disabilities have participated in RSA social/support meetings via Zoom. Additionally, 15 family members participated in the newly established virtual caregiver support group. In May, grant funding helped support hosting software and speakers for a virtual spinal cord injury (SCI) health fair attended by 55 individuals.

“The health fair participants could attend sessions on recreation, SCI research, pain management, sexuality and more,” says Hilderbrant. “Of course, Covid causes many issues, but transportation barriers, limited resources and health challenges can also make connecting online more appealing to a large and diverse group.”

One of Hilderbrant’s top goals with the grant support was expanding RSA’s membership reach.

“I wanted to find a way to connect with people living in the city. Most of our members are from the greater Rochester area, but we have not been well connected to individuals living in urban areas,” says Hilderbrant.

After speaking with a young man who sustained a spinal cord injury from a gunshot wound, Hilderbrant decided to establish a violence survivor support group open to anyone injured through any form of violence. To date, the group’s 17 participants are all survivors of gun violence.

“Any SCI is traumatic, but it is a different level of trauma when you are shot and you still feel threatened,” says Hilderbrant. “Many of our participants were targeted due to drugs or gangs and still live in the same neighborhoods. Some struggle with whether to focus on rehab or revenge. Some were attacked by an ex-spouse and still live in the house where the attack occurred.”

The group meets biweekly via Zoom to connect people in this situation with each other and help them identify SCI resources. During the summer, the group also met in person for a picnic. Hilderbrant hopes to continue expanding the group and to serve as a model to create similar groups in other large inner-city areas.

“This is certainly an underserved population in the SCI community,” says Hilderbrant. “The experience of receiving peer support is life-altering for many participants as they learn from each other and help each other move past their anger, fear and frustration.”

The grant also enabled RSA to collaborate with the University of Buffalo Physical Therapy Department to offer members a three-month trial for Kakana online exercises focusing on shoulder health. In addition, the funds supported RSA member participation in recreation opportunities with other community organizations, such as adapted rock climbing, adapted fencing, adapted water skiing and other open water sports.

Eight iPads were purchased using the grant to create a local lending library for individuals who couldn’t afford to buy their own. RSA also provided basic technical support to teach new users how to operate the iPad.

“Gaming is another great way for people to stay connected to others,” says Hilderbrant. “The grant enabled us to add two adaptive video game controllers to our lending library as well. This is especially great for our younger members. It is amazing how many social connections are made through gaming.”

To date, the iPads loans have assisted 15 people and the game controllers used by five individuals.

“I am so thankful for the opportunity to help people in our area living with SCI,” says Hilderbrant. “I have been fortunate to see many people make a transformation and turn a corner with their injury. We all have bad days, but I hope our programs are helping people have good days too. I want people to know that they can still do anything they want to do.”