United Spinal Association and The Buoniconti Fund recently teamed up to create a national network of peer support groups called the “Spinal Network” to set higher standards in assisting people living with spinal cord injuries and disorders (SCI/D).
The goal of the Spinal Network is to ensure more peer support groups in cities and towns across the United States are connected to the very best resources to help people with SCI/D maintain independent and active lifestyles.
“The Spinal Network partnership between United Spinal, its NSCIA chapters, and the Buoniconti Fund, allows us to coordinate efforts at the grassroots level, and build a much needed national network of peer group support,” said Joe Gaskins, United Spinal’s president & CEO.
To date, over 65 support groups across the country have received funding through grants from The Spinal Network for their commitment to improve the lives of people with SCI/D.
Support groups have utilized the grants in a variety of exciting ways, from raising public awareness of SCI/D and hosting valuable events and social outings to arranging transportation for new members to attend group meetings and inviting knowledgeable guest speakers to talk to their groups about overcoming the challenges of living with a disability.
The Bacharach Institute for Rehabilitation SCI support group in New Jersey was able to purchase portable mats to be used to allow wheelchairs users to get across the beach to be able to join in their open water swim program in the bay and ocean.
“We have at least 7 persons with SCI/D signed up to begin swimming and prone paddling in the bay, with transition to the ocean during the summer months. We have trialed the mats with several wheelchairs and they work well. The mats are durable and will assist this program for years to come,” said Becky McGill, group leader.
Broward Spinal Cord Injury Support Group of Sunrise, Florida used their grant in a similar fashion, giving newly injured people the opportunity to enjoy a day on water to learn the ropes of adaptive sailing.
SCI Connections, a support group in Santa Clara, California put funds toward developing a webcast of their group meetings and educational events, giving individuals with spinal cord injury who do not live in Santa Clara County access to the group’s valuable resources and support. The group has already webcasted presentations on disability rights; health after SCI; supplemental security income and other topics.
Spinal Network grants also helped some groups train new peer mentors to assist people living with SCI/D. HeadNorth Peer Mentoring Program, a Spinal Network support group from San Diego, California hosted a two-day training for 37 new peer mentors.
“Mentors are the first line of support for individuals when they are first injured and still in the hospital. Trainings are so important because they help mentor develop a good sense of the resources available in the community, how to answer tough questions, bedside manner, dealing with family issues, and so forth,” explained Renee White, group leader.
“Of the 37 mentors trained, 21 have been matched. We’ve had more than 30 matches the first part of 2013 with several matched with more than one person. This is an increase to year’s past and great resource for individuals and families recently injured,” White added.
Regeneration/Generation Meetings support group in Baltimore, Maryland purchased general reference books on SCI for patients to borrow from its lending library. They also purchased DVDs to share their support group meetings with those who were unable to attend. These books and DVDs will be part of a growing resource library.
Other groups focused funds on helping individuals with SCI/D who were in need of critical support. The East Texas Neuro Support Group purchased curriculum for an individual who is a 4-year post-traumatic head injury and a resident of a local nursing home. Four volunteers from Stephen F. Austin State University tutored this individual with these educational materials for ten weeks to increase his reading and writing skills. The group also helped a local church buy a scooter carrier for a minivan, two tie-down straps, and a rain tarp for an individual who recently experienced a stroke.
The Minnesota Spinal Cord Injury Association aimed their grant at raising SCI awareness through a state-wide proclamation project. They worked with a group of volunteers to reach out to every mayor in Minnesota, requesting a proclamation in their city recognizing Spinal Cord Injury Awareness Month in September. Two dozen cities wrote proclamations. MNSCIA members were also invited to city council meetings, where formal proclamations grabbed community attention.
The Spinal Network is established through a partnership between The Buoniconti Fund; United Spinal Association and its membership program NSCIA; and tremendous support from Founding Corporate Sponsor Hollister, Inc.––a world leader in urological products.