People with MS and Spinal Cord Injuries Mentor Peers

A new ICS Mentoring Program is training people with spinal cord injuries (SCI) and Multiple Sclerosis (MS) to mentor other people living with these conditions.

“I want to give people access to resources in the community that I didn’t have,” said Hilda, an ICS member who attended ICS’s first peer mentorship training program this month.

The goal of the program, made possible by a generous grant from the United Spinal Association New York City Chapter, is for mentors to form supportive relationships with “mentees” who have a similar diagnosis. Mentors are trained to help their mentees adjust to the changes and challenges their conditions entail, work through barriers to independence and well-being, and take an active role in their own care and their community.

Focusing on strengths

The mentoring program is built upon the fundamental belief that all people have strengths.  A strength-based approach does not ignore challenges or problems. Rather, by focusing on skills, strengths and resources attention shifts from loss and what cannot be done to exploration and implementation of what can be achieved.

“When people feel helpless, they don’t make the best decisions for their health. Too many people end up in nursing homes, instead of living full lives in the community, because they just didn’t get the support they needed when they needed it,” says Elaine Castelluccio, Director of the ICS Disability Program, who led the training. “We want to give our members the tools they need to be self-advocates, to stay as healthy and happy as possible, and to become the directors of their own care.”

Mount Sinai peer mentor coordinator Jim Cesario volunteered to share his time and expertise during the first ICS peer mentor training, where 15 ICS members participated. They were chosen because each of them has developed a great ability to cope, care for themselves, and advocate for others after facing a life-altering accident or medical diagnosis.

“I was bedbound for 6 years. Then I got my GED, and became interested in doing volunteer work. My next goal is to get a job. I like being able to help anybody – able-bodied or disabled. I’ve been a mentor for many people in my family – a lot of people look up to me,” said Michael, an ICS member and now a trained mentor.

Building skills and connections

Using role-playing and other exercises, the ICS training teaches mentors how to effectively communicate with mentees. This includes ways to encourage mentees to open up about their challenges and set their own goals, and effective ways to respond to common struggles and find new sources of self-esteem.

Some of the tools mentors learn are:

  • Active Listening – using eye contact, summarizing what the other person said in order to show compassion and understanding, and to establish trust
  • Tactful questioning – asking open-ended questions to encourage conversation
  • Setting realistic goals – focusing on what the mentees can do now, rather than what they can no longer do
  • Staying neutral—avoiding giving advice based on one’s own negative experiences or perceptions

Marcus Johnson, ICS’s Director of Advocacy, discussed the importance of encouraging mentees to be self-advocates – voicing their needs and concerns to get access to the care they need.

“We have members who will settle when they should not be settling,” he said. “Members should know what options are available and how to ask for them.”

Elaine encourages mentors to share their own experiences and challenges.

“You don’t have to have all the answers,” she tells them. “You can say, ‘I’m still working on that myself’ and that’s ok. It’s a way of letting the other person know they’re not alone.”

The mentors left the training feeling the value of the positive effects they can have on others.

A Lasting Impact

“The training was great,” said Tony, a newly minted ICS mentor, shown in the photo above. “I see a lot of potential to go above and beyond. People need our help – we may be the only people they feel they can reach out to right now. I loved what I saw today – and I really like being able to help someone express themselves.”

Peer mentors will meet with or have a phone call with their mentees at least twice a month over the course of a year. ICS program staff will use quality-of-life surveys to evaluate the success of the project.

Elaine says, “I’m excited for the mentors – as much as they will give, they will get more by helping others. But I’m most excited for the mentees. These are people who are struggling with socializing and coping. We can help them find acceptance about their condition, and joy in their lives.”

ICS member Kimmarie Norman was recently hired to coordinate the new mentoring program. In this role she will ensure that all mentors are properly trained and matched with appropriate mentees. In addition, Kimmarie will be responsible for the formal evaluation process, to ensure that mentees are getting what they need from the program.

“Mentorship is the gift that keeps giving. I’m excited about helping people grow and live their dreams,” Kimmarie says.

For additional information on the ICS Peer Mentoring Program, including how you can become a mentor or be assigned a mentor, please email elaine.castelluccio@icsny.org.

4 replies
  1. Maria Constanza Sanchez Chiappe, Digital & Visual Communications Associate
    Maria Constanza Sanchez Chiappe, Digital & Visual Communications Associate says:

    Hi Kimberly,

    Thank you for taking the time to write to us. Yes, the ICS Peer Mentoring Program trains people with spinal cord injuries (SCI) and Multiple Sclerosis (MS).

    Hope you have a wonderful day,

    Coni.

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