United Spinal Association and The Buoniconti Fund continue to work together to bring the very best resources and peer support to people living with spinal cord injuries and disorders (SCI/D).
In 2013, the organizations teamed up to create the Spinal Network to address the need for improved coordination between peer support groups in cities and towns across the country in sharing vital resources and helping people with SCI/D maintain their independence and quality of life.
Since then, the Spinal Network has made great progress in assisting people living with SCI/D who are transitioning from rehab back into their communities.
About the Spinal Network
The Spinal Network is established through a partnership between The Buoniconti Fund; United Spinal Association; and tremendous support from Founding Corporate Sponsor Hollister, Inc.––a world leader in urological products.
The Spinal Network offers grant opportunities, which are available to all support groups in the SCI/D community in the United States. Grants are awarded bi-annually to groups who meet specific criteria. Additional micro-grants are awarded bi-annually based upon available funding and encourage program innovation and outreach efforts to people newly affected by SCI/D.
What the Spinal Network Achieves
The Spinal Network is composed of peer support groups and United Spinal Association chapter affiliates that work together to set higher standards in assisting people living with SCI/D.
The network provides peer-to-peer support to persons with SCI/D, caregivers, and family members and shares guidance on all facets of living with SCI/D, including employment; affordable housing; transportation; health care; home- and community-based independent living; education; and leisure and recreation.
The Spinal Network has achieved this important goal by offering extensive tools and training to peer support group leaders that ensure they can effectively assist and empower their members to discover active and rewarding lives.
The Spinal Network is also supported by United Spinal Association’s comprehensive SCI/D Resource Center and its 45-plus national chapters–– which promote health, inclusion and independence; organize local events and projects; advocate for rights and accessibility; and offer information and support to their chapter communities.
“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.
Why Peer Support Makes a Difference
United Spinal Association and The Buoniconti Fund believe there is no greater support than that of your peers. Connecting newly injured or diagnosed individuals with others who not only understand their issues but how to overcome them is extremely valuable. It can change someone’s state of mind, provide a positive outlook and lead to new opportunities that were never even considered possible.
Diane Epperly, Executive–SC Spinal Cord Injury Association
Of all the offensive words that make me cringe, wheelchair-bound ranks right up there in the top. The men and women I work with are in no way prisoners of their wheelchairs; quite to the contrary their chairs provide them with the mobility to get out and do all the things that bring meaning and satisfaction and color to their lives.
Thanks to Hollister and a Spinal Network grant, the South Carolina Spinal Cord Injury Association was able to host a zip line trip to Camp Twin Lakes in Rutledge, Georgia. One by one members of the Midlands Breeze Group transferred from their wheelchairs, were hoisted up a 400-foot tower, and went flying through the woods and over a pond. I can assure you that none of them felt bound in any way.
“Amazing.” “ Thrilling.” “Awesome.” Exuberant smiles accompanied a flurry of thrilled responses. And even though it took more than a two-hour drive to reach the accessible zip line, the quick trip down the zip line was worth every mile of highway. By the end of the day some participants were even talking about what they might like to try next. Scuba diving, anyone?
Mark T. Race, NHNSCIA and Peer Support Supervisor–Granite State Independent Living
New Hampshire is a very rural state and if you use a power chair and have no transportation or live outside of any public transportation you may be very well stuck.
NHNSCIA had a 40 plus individual hike up at Crotched Mountain’s accessible trails in June.
I’d talked “Joe” into attending, his first peer outing since his SCI resulting in quadriplegia and we provided him and his Mother accessible transportation to the event. “They”, Mother and son, mid-twenties, had the best of times, hiking the accessible trail in his power chair with peers that he could speak with, male and female, and he found out that he wasn’t the only person in N.H. with quadriplegia, finally.
At the end of the day “Brenda” Joey’s Mother came up to me as we were departing from the day’s event, eye’s full of tears thanking me for the accessible transportation and talking Joey into attending. She said that “Joey” finally found “some friends that he could talk and relate to”, I knew what she meant and she stated that she’d not seen him so happy since his SCI. We all departed and went our separate ways thinking about the day.
The next morning I received a call from Joey that his mother died that night, unexpectedly, and could he get any and all pictures from the previous day’s events so that he could run a loop of these pictures at her wake of her last day on earth and the wonderful time that they’d had together.
If we’d not had that funding this mother and her son wouldn’t have been able to travel and participate in this group activity without the funding for this accessible ride.
Those funds have provided many power and manual chair users accessible transportation to many activities and events that NH-SCIA has held on and off site.
Herbert Werner, President–Northeast Ohio Chapter, NSCIA
The Northeast Ohio Chapter of NSCIA is committed to sustaining a supportive community to improve the quality of life of those affected by SCI by offering educational and recreational opportunities to our community at no cost.
In order to reach the newly injured, the Chapter holds its monthly evening meeting at the SCI rehabilitation facility. A light supper is part of our meeting to provide inpatients and family with a break from “hospital food” as well as creating a social atmosphere to encourage conversation between inpatients and peers. This program has successfully grown meeting attendance from 10-12 to 20-40 attendees. The goal has always been to have a sponsor cover the cost of food and beverage, but when a sponsor did not emerge, the chapter covers the cost. With the growth in attendance, the chapter faced financial distress when sponsors were not available and a meeting expense is now $150-$250.
Through the generosity of The Spinal Network, our Chapter has been able to sustain this meeting program, create the atmosphere for peer support and build participation in the chapter and its activities. Absent this support, our chapter would have been forced to drastically change its monthly meeting.
Meena Dhanjal Outlaw, Coordinator–Connections, a program of NSCIA Houston
Connections Peer Network started off being a peer to mentor matching program with seventy mentors in the Houston area. Now we have over 150 mentors. Each person that has been matched so far are now friends within our community and group within Connections.
The impact this program is having in the community is a dream come true to many living with SCI/D. Included in the list of Mentors are those also living with multiple sclerosis, muscular dystrophy, and we have started to identify teenagers needing a mentor, as well. We have managed to match, on average, two mentors to a peer per week.
We had our first meet up in August 2014. It was a movie mixer night where fifty of our peers and mentors attended. We had a great night of feeling together and making sure that everyone knew that this was the first of many future monthly meet ups.
On Saturday 27th September, 2014 we had a Makeover Meet Up. Five Makeup Consultants had volunteered their time to give free makeovers to those who are interested, while the rest of us visited and talk, which has been requested by many. We also provided light snacks and beverages.
In October 2014 we will be having a bowling party. In November 2014 we are creating a Round Table meet up. Since it is close to the holidays and as some may have family support, others might be alone. Therefore, this will give an opportunity for those who need to talk to do so. In December we will be having a Christmas get together.
This program has provided support, emotionally, mentally, practically, as well as, a forum for open communication for many. It has opened doors to more friendship and the feeling of togetherness. Human interaction is one of the best ways to show someone we care, and Connections is doing this on a daily basis.
For more information on joining a Spinal Network Peer Support Group or starting your own, contact Lindsey Elliott, director of Member Initiatives at firstname.lastname@example.org or call 718-803-3782 ext. 7241.