Bill Cawley tells a hypothetical story about how peer coaching might click between two people with seemingly nothing in common except quadriplegia. Cawley, Director of Community Programs Development for the Reeve Foundation, rolls into a hospital room to meet a man to whom paralysis is very new, and very much a bad dream; he may be scared, he may be mad, he is usually in some stage of denial.
"So here's the guy sitting in rehab. His nurse tells him, 'You can live a great life, you have all sorts of options.' Yeah, right. He's in bed with bolts in his head. In I roll. "Hi, I'm Bill, sorry I'm late, I just got out of work and couldn't find a place to park.' Then my cell phone rings. I take the call. 'Yes, honey, I'll pick up the diapers.'"
In less than a minute the guy knows Cawley has a job, that he drives a car, is married and has a family. "And most importantly, he's hearing it from a guy in a wheelchair, not from a doctor or therapist. "You just can't measure the difference getting the message from a nondisabled professional versus a peer -- from someone who has been there. But someone who also appears to be thriving, realistic and optimistic."
More Reeve Report
Twenty years ago, when Harold Aguilar was first injured, he was visited by an SCI peer, a quad with about Harold's level of function. It wasn't dramatic. "I didn't take it seriously," says Aguilar. "I just didn't feel the need to discuss my situation." But soon after Aguilar got into out-patient rehab, staff couldn't help but notice what he describes as a "let's get into the swing of it" attitude; they often asked him if he wouldn't mind paying a visit to a patient in the earliest days post-injury. "I got roped into being a coach or peer counselor as a favor to my therapists." Aguilar liked it, got good at it, and has been peer coaching at the Kessler Institute for Rehabilitation for many years. Aguilar, a veteran Information Specialist at the Paralysis Resource Center, is now Coordinator of the Peer & Family Support Program (PFSP), helping to build a national network of mentors.
"I can totally relate to the people who give us the brush off," says Aguilar. "We have to be patient. We'll be there for them when they are ready, when they do have questions. We'll feel them out, let them talk. Of course, many newly injured patients want to talk to a mentor fairly soon after they get to rehab. They want to know about driving, about sex, about bowel and bladder issues. They want to know how this wheelchair lifestyle works."
In many ways, peer mentoring is an extension of rehab. Many newly injured folks are discharged from rehab before they have all the tools they need to manage their paralysis. Says Aguilar, "They just get them stabilized. They send them out of rehab without the right equipment, and with less than the appropriate amount of education to effectively manage their situation. Many don't know what a bowel program is."
Enter the mentor: "What we want our peer mentors to do," says Aguilar, "is to be a tour guide to a person's new lifestyle. We want to be able to point them in the right direction when faced with the obstacles."
Paul Mortenson's daughter Wendy was spinal cord injured in 1997. She didn't have anyone her age or level of injury come to see her in rehab. When she got home again she was nowhere near prepared for her new life. "At that time there were no services in the state, no support groups, no peer-to-peer support, no social recreation programs, nothing. As parents, we knew nothing about spinal cord injury. I knew Christopher Reeve broke his neck but I didn't know a thing about paralysis."
Mortenson did some research and talked to others, including those with injuries. "We realized we needed to get information to people and the best way is by way of peer mentors. We started the Arizona Spinal Cord Injury Association in April of 1999. A peer mentoring program was one of the first things we implemented." As many as 400 people with SCI joined the peer network, with as many as 200 active, Mortenson said.
The Arizona program is in many ways the model for the Reeve initiative to create a national peer-to-peer network. Last February, a group of 15 in Phoenix became the first to get certified as Reeve peer mentors. That was followed by a training in Jacksonville, FL. More trainings are in the works to add counselors to eight national regions, each now overseen by a part-time coordinator.
The certification process involves a nine-part online module to assess each candidate's basic knowledge of SCI and related topics, as well as awareness of resources and connections to the community. A full day of training then takes place in each region. The curriculum and certification process was developed by Tony Cahill, Ph.D., from the University of New Mexico.
Says Joseph Canose, SVP, Quality of Life for the Reeve Foundation, who oversees the PFSP, "The need for those living with paralysis as well as family members and caregivers may never be greater. Hospital stays for the newly injured have been reduced three weeks in some states; services at local and state levels have been reduced and all but vanished in some cities and states. This void in service and support will most likely continue to grow; a national peer mentoring program can help fill that void. We believe in empowering those affected by paralysis with the best knowledge, resources, support, and community. The PFSP will provide critical emotional support as well as local and national information and resources."
Cawley notes that there is a public health policy aspect to the peer-to-peer program: "Our goal is that a person being mentored will have a clearer understanding of his or her body, and of maintaining health and wellness. In particular, we want them to be wary about avoiding secondary conditions -- skin sores, bladder infections, depression, and so on.
"We also want to initiate an honest, realistic and optimistic discussion about the future. We want people to have peace of mind that they are part of a nationwide community, that no question is too small, that nothing is off limits."
For more about the PFSP, see www.ChristopherReeve.org/Peer.