United Spinal Association and The Buoniconti Fund announced their plans in May 2013 to create a coordinated national network of peer support groups called the “Spinal Network” that will 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.
“There are a variety of SCI/D support groups out there, both new and old. Unfortunately, there is very little coordination between them and their standards can be drastically different,” said Paul J. Tobin, president and CEO of United Spinal Association.
“In many cases, a person with SCI/D who has had great peer support may move to a new community with minimal support. Even worse, someone may leave a rehab facility with no support whatsoever and no clear picture of how to overcome new challenges,” added Tobin.
To date, over thirty support groups in 20 states have received funding through grants from The Spinal Network for their commitment to improve the lives of people with SCI/D.
“We believe there is a strong need for greater support for individuals and families that are affected by spinal cord injuries and disorders. The Spinal Network will help bridge that gap between people living with SCI/D and their community so they are able to not only return home, but gain a new understanding and outlook on life,” said Marc A. Buoniconti, president of The Buoniconti Fund and one of the founding members of the Spinal Network.
The Spinal Network will address this issue by establishing a strong national peer-to-peer support base, backed by United Spinal’s membership division, National Spinal Cord Injury Association (NSCIA), and its 70-plus national chapters and extensive resource center. Guidance will be provided on all facets of living with SCI/D, including employment, affordable housing, transportation, health care, home- and community-based independent living, education, peer support, and leisure and recreation.
Extensive tools and training will also be provided to leaders of each peer support group that joins the Spinal Network to help group participants adjust to SCI/D––from tips to improving social interactions and overcoming day-to-day challenges, to developing new self-management skills.
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.
The Spinal Network will offer grant opportunities, which are available to all support groups in the SCI/D community in the United States. Grants will be awarded bi-annually to groups who meet specific criteria.
Additional micro-grants will be awarded bi-annually based upon available funding and will encourage program innovation and outreach efforts to people newly affected by SCI/D. Finally, the Spinal Network will work to ensure that peers can find out what they need and when they need it, as they move from one area to another. As every person with SCI/D learns in rehab, one of the most reliable sources of information about living with SCI/D is another person who has been there. The Spinal Network will help make those connections.