Starting a Support Group

By | 2017-01-13T20:41:20+00:00 August 1st, 2016|
Contact The Editor

Kenny Salvini (right) started a support group near his eastern Washington home when he realized how much there was to learn from other people with spinal cord injuries.

Kenny Salvini (right) started a support group near his eastern Washington home when he realized how much there was to learn from other people with spinal cord injuries.

Peer groups can be great. They can increase life expectancy, decrease depression and improve quality of life. People who have peer support tend to feel less isolated, have more confidence and are more likely to actively participate in the communities we live in.

Those are all positive things. The problem is that many of us don’t live in a place where we have access to a peer group that will let us experience all these wonderful benefits. United Spinal Association currently lists 182 support groups in the United States, and while that is a significant number, considering there are millions of wheelers, and support groups are not evenly spread throughout the country, there are still many areas that are unserved.

So when Lynn Murray, Kenny Salvini and Mark Bender each realized there was no peer group for them in their respective communities, they each decided to go for it and start a group that was what they wanted to see in their own community.

None of these men had experience starting (or leading) a peer group, but they didn’t let that stop them. Today these men lead three very different, thriving peer groups in their communities, and they couldn’t be happier about it.

The Placerville Mobility Group
“It became glaringly apparent that there was no way in hell I was going to realize full recovery without having a support group,” says Lynn Murray, founder of Placerville Mobility Support Group in Placerville, California. Murray has a T6 incomplete and T10-11 complete injury from falling off a roof in 2004. There were no peer support groups in the town where he lived, and after attending a few meetings about 30 miles from his home, he concluded that was just too far to travel regularly.

“So I decided to hell with it, I’d get my own game going here,” chuckles Murray, a 69-year-old active retiree who started his group in 2007. “I have found that travel of any kind is one of the challenges that people in wheelchairs and with ambulation challenges face, so the more you can minimize that, the better.”

Murray’s Placerville group started as an SCI support group, but quickly widened focus to be inclusive for everyone with mobility issues. The group is largely focused on doing, with monthly meetings for folks with mobility impairments and their supporters. The group also has a loosely affiliated group of peer supporters who visit hospitals and homes of people new to their injuries.

The Placerville Mobility Support Group has several fundraisers each year, including an annual bike and handcycle ride called “The Hangtown Cranker Classic.” The funds they raise go toward giving financial assistance to wheelers for purchase of durable medical equipment, retrofitting homes for accessibility, and more. They focus on getting people what they need to live the group’s motto: “Get up. Get out. Get Better.”

“One of the things we believe in is to get over yourself and get moving,” explains Murray. “In other words, you have a choice — you can lie in bed and stay in the house all day long and ruin your life and the lives of those around you, or you can get past yourself.”

Advice From Support Group Founders

mark2
Kenny Salvini: Stay patient. Sometimes his group’s monthly meetings have consisted of just Salvini and his family, but he committed to meeting monthly regardless. Over time more and more people started coming. “If you can commit to just finding a room, doing it once a month, and show up and advertise it,” he says, “you never know who’s going to come through the door.”

Mark Bender (above): Involve successful people with a broad range of experiences as early as possible. “Getting a board with some outside influences has been very, very helpful,” he says.

Lynn Murray (whose group started out completely on its own before becoming a chapter of United Spinal): Turn to an already established resource. “I would take advantage of an umbrella organization at the early stage.”

Members of Murray’s group do what they can to help kick-start lives. He recounts the story of a young man who became a quad as the result of an auto accident. Members of the group did several home visits, but it was a long process before the young man really got his life back on track.

“It took a while, but now he and his mom meet with us monthly,” says Murray. “More importantly, he wants me to go with him to visit high schools in the area and make a presentation about the consequences of poor choices.”

Several years post-injury this man is not only an active participant in the support group, but is also active in the greater community and trying to help others. Murray says this is the embodiment of their motto, and he’s proud to be part of a group that helps people find their way.

“It’s hard to overcome injury. When depression sets in, people need tools to overcome that. It’s almost like AA — you need to have people you can call and say, ‘I’m in a hole, I need a rope.’”

The Here and Now Project
Thirty-six-year-old Kenny Salvini is a quad who experienced a C3-4 complete injury in a skiing accident in 2004. His closest peer group option was over half an hour away from his home in Sumner, Washington, and he was discouraged to find that it was filled with only paras and “no one that looked like me.”

His opportunities to meet people in the wheeler community were further hampered by non-healing pressure sores. He was a self-described “shut-in” for the first six years post-injury. Then a chance meeting at a fundraiser transformed his life. Salvini met a fellow quad who told him about a chair cushion that was a game changer for his pressure sores.

“I realized then that I needed to connect with as many people as possible because I was obviously not going to learn hands-on experience from doctors and therapists,” says Salvini.

He and some friends co-founded the Here and Now Project in 2014 to provide a “fellowship of support” for people experiencing paralysis and the people who support them. He suspected that he wasn’t the only person who needed the wisdom and company of peers, and he quickly found that there was a community out there, ready to go.

“The reason the Project works is that the whole community has rallied around this idea,” says Salvini. “We just tapped into something.”

Today Salvini’s Here and Now Project has monthly meetings for folks with mobility issues and their supporters in five different locations, separate caregiver meetings, an annual barbeque and other activities out in the community for fun and public awareness.

“Experience is paramount,” continues Salvini. “You can have talks and lectures and books and all that stuff, but you are not going to take it to heart until you see someone who can say, ‘I know exactly where you’ve been, and it gets better.’”

One of the main goals of the Here and Now Project is to simply allow people the space and time to connect and learn from one another. The group is focused on getting people “wheel to wheel” with other wheelers and to live their motto: “Do Life in the Here and Now.”

“The goal has been to get people under one roof and let the sparks fly,” says Salvini. Here and Now Project members have used those sparks to help one another for everything from day-to-day moral support to advice on how to get benefits that people need to survive. More than one member has come to the group struggling with serious care issues, from unresolved pressure sores to insufficient personal care, and they found that the collective experience of the group has helped guide them  and find solutions for their issues.

The Here and Now Project doesn’t require anyone to sign up or officially join. It is a network of peers coming together for each other. Ultimately Salvini views the group as a tool to be used by individuals looking to improve their own lives:

“We are focused on ‘one.’ If we can even have one person make one connection that’s anywhere close to the experiences that I’ve had meeting people, then it’s all worth it.”

Finding HUP
Mark Bender, founder of the group Finding HUP, in Duvall, Washington, had a slightly different reason for starting his peer group. He wanted to play.
The 41-year-old husband and father of four was an avid cyclist and outdoor enthusiast prior to his 2013 body surfing injury. His accident resulted in what he thinks was a C5-6 dislocation and he believes that he’s currently considered a functional C7 — but he’s not positive.

“I know I should know,” laughs Bender, “but I’ve never wanted to focus on the level of injury because it instantly assigns limitations to you.”

Salvini’s Here and Now project hosts a number of social get-togethers in addition to support groups, with the goal of getting as many people out as possible.

Salvini’s Here and Now project hosts a number of social get-togethers in addition to support groups, with the goal of getting as many people out as possible.

As someone who has never been defined by limitations, during his rehab at Craig Hospital in Denver, Bender took full advantage of Craig’s wealth of adaptive recreational equipment. But when he returned home to Washington, he quickly became frustrated by his lack of access to the equipment he needed to resume an active life. He also realized that he was not the only one in this predicament.

“It hit me,“ says Bender. “There was a problem, a gap, and I had a feeling that I wasn’t the only one in that situation having a problem. “

So in 2014 he founded Finding HUP, a group committed to providing free opportunities and equipment for people with mobility impairments to “get back in the mix” and participate in outdoor recreational activities.

“The concept of Finding HUP is finding encouragement,” says Bender. The group name comes from the term “HUP!” — a word used to encourage cyclists and other racers. “It’s a way to say … you can do this. Being a quadriplegic it seems like [the challenges of] that group can be harder and more discouraging. One of the things that we like to say is ‘Get back in the mix and off the sidelines.’ I want to help people get there. I want to help people find new passions or rekindle something they never thought they’d be able to do again.”

Finding HUP isn’t a traditional peer group. They don’t have meetings — they have experiences, from a weekly handcycle meet-up at a local racetrack to getting together to try out a Mountain Trike. Beyond that, there is peer support and friendship in the midst of all that play.

“When you are doing an activity, I think it helps to pull the focus off the injury,” explains Bender. “When you are doing the activity and socializing, you forget that you got hurt. A community tied around an activity is very strong, regardless of what that activity is.”

Something else that sets this group apart is that everything is free. Most adaptive recreation activities cost money that participants often cannot afford. Finding HUP has had fundraisers to raise money for equipment and is currently crowdsourcing in an attempt to buy adaptive stand-up paddle boards to share with the community.

“One of my key convictions is that when we do an activity, it is free to the individual,” says Bender. “Being injured I understand the financial strain.”

Through its focus on activity and recreation, the group’s participants are having some life-changing experiences. One member wrote a Facebook post explaining what it meant to him to get to ride bikes with his children for the first time. Another member recently borrowed the group’s Mountain Trike to take his kids to the beach. It was the first time ever that he was able to take his kids out on the sand and share in the fun.

“It literally brought me to tears just to think that I’m helping somebody get out with his two kids for the first time to the beach,” says Bender. “It’s so much bigger than me. It’s helping people live.”

Fringe Benefits
Murray, Salvini and Bender are putting a lot of their time and energy into leading their respective groups, but each of them feels like the experience has given them back much more than they have given. “I get everything from managing The Here and Now Project,” says Salvini. “That’s my joke — everyone thanks me for doing this, but I’m doing it for myself. Every time I meet somebody I learn something new.”

“When you’re out there trying to help other people and not focused on yourself, I think it’s very, very healthy,” says Bender. “It’s what life should be about. The more I reach out to help someone, the further along it helps me in my journey.”

“I’m so damn lucky … I’m just doing what I’m supposed to do,” sums up Murray. “Whatever’s your thing, whatever you’re supposed to do, just do it.”

Lynn Murray’s Placerville Mobility Group focuses on getting people out of their houses and getting them active in events like the annual “Hangtown Cranker Classic.”

Lynn Murray’s Placerville Mobility Group focuses on getting people out of their houses and getting them active in events like the annual “Hangtown Cranker Classic.”

Starting a Peer Group
So what does it take to start a peer group? You need to have the desire, time, energy and some interested peers. Or in Lynn Murray’s case, “peer.”

“It started with me and one other fella,” laughs Murray. “Now we are up to about 78 people!”

Here Are Some Basics:
Identify what type of group your community will support. Find some like-minded people who will support your efforts and go!

Figure out the nuts and bolts of how to structure your group. There are a ton of resources from your local library and the internet on how to structure your group (will you meet, where to meet, how often, etc). Do your research, try some things and don’t be afraid to make changes if you think something isn’t working.

Advertise! Your community needs to be able to find you. There are lots of ways to reach out. Word of mouth, social media, flyers — how you advertise will depend on the resources your community has.

Remember, you don’t have to go it on your own. Some larger state and national SCI/D groups, such as United Spinal Association, provide resources and even peer support training for people who want to build and lead a group. One such resource is Spinal Network.

“The benefits of being listed on the Spinal Network is to gain exposure and inform the public on a large scale that your support group exists,” says Lindsey Elliott, United Spinal’s director of member initiatives. Elliott is a resource contact for peer groups and mentors across the country. “We want to be able to link our members up with their local resources, and being able to point them directly to support groups in their area is great. The support groups are also looking to recruit and encourage new members to attend, and if we can help connect those dots, our mission is complete!”

Resources:
• Placerville Mobility Support Group, placervillemobilitysupportgroup.org
• Here and Now Project, hereandnowproject.org
• Finding HUP, findinghup.org
• United Spinal’s Spinal Network, www.spinalcord.org/spinal-network/. Want to list your peer group on United Spinal’s Spinal Network? Contact Lindsey Elliott: LElliott@spinalcord.org.
• United Spinal Guidelines for Starting Your Own Peer Group, www.spinalcord.org/resource-center/askus/index.php?pg=kb.printer.friendly&id=12#c72
• Wheel Life Peer Support Resources (all wheelchair users), wheel-life.org/connecting-peer-support-group-community/
• Christopher and Dana Reeve Foundation Resources (people with paralysis), www.christopherreeve.org/get-support
• Backbones connections, backbonesonline.com/?page_id=74