A Most Natural Approach



Amy Anderson smiles as she repeats the phrase. “Dignity of risk and the right to fail.” She lets the phrase sit quietly for a moment before she continues. “Being a human means you can choose to do something or not do something. It doesn’t matter what I think you should do; it belongs to you,” Amy says. Amy feels the importance of breaking assumptions about people with intellectual and developmental disabilities. There is a sense sometimes that everyone with a disability is the same, she states, but we should really be asking ourselves, “How are we all alike? What about our dreams, passions, and fears?” Amy works directly with clients a few days a week as well as in the Learning for Living program, which aims to provide independent living skills to individuals with intellectual

Amy Anderson and Randy Lizotte

and developmental disabilities. She also acts as a coordinator for the peer training team and as an ally for the Next Step Peer Support Group, which gives her multiple contacts with clients and allows for relationship building.

Many people are told what to do their whole lives, Amy notes, and part of being a peer advocate is demonstrating what it looks like to make choices and speak up for yourself in a way that works for you. It’s giving people the confidence to speak up without fear of retribution. It’s believing in them,” Amy says simply. Heather, a peer advocate, sits next to Amy with her hands folded tidily across her lap. “Amy believed in me when I was studying for my learner’s permit and I actually got it.” Her face lights up as she recalls her triumph.
We all know how hard it can be to speak up for ourselves, especially if we feel like it’s not our place or we don’t have the right to express our opinions. Maybe we don’t know what to say. Or we just don’t want to do it alone.

Green Mountain Self Advocates (GMSA) is a statewide organization with a purpose of supporting people with intellectual and developmental disabilities to take control of their lives, solve problems, make decisions, and advocate for themselves. GMSA offers assistance with voting registration and helps to unify voices at the state level to affect legislation by offering information and education about the legislative process, as well as accommodations to allow groups face-to-face opportunities with politicians. About 15 years ago Randy Lizotte became a member of GMSA and he has served as president of the Board since 2010. Self-advocacy has always been Randy’s passion. He actually met his wife at a GMSA meeting, and two and a half years later, he moved to St. Albans where his wife resided. Shortly after Randy began volunteering at NCSS, there was a job posting in the Developmental Services division, which Randy landed right away.

GMSA started out as a small self-advocacy group in Burlington and has now expanded to a network of 23 local groups located in towns across the state, including the St. Albans’ group. Next Step, the St. Albans GMSA group, meets every Friday at the Academy of Learning, one of NCSS programs within the Developmental Services division. Though the group is not affiliated with NCSS, Kathy Brown, Developmental Services director, wanted to show her support for the group by offering up NCSS space as a meeting zone. “It is an honor to be given

Academy of Learning

access to the Next Step peer advocates voices,” Kathy says. “They are insightful, honest, and dedicated to pushing all of us at NCSS to deliver person-centered services. The Next Step peer group has allowed our Local Standing Committee to join them monthly; this unified collaborative gives a significant consumer voice to all our new initiatives and divisional decision making.”

Amy feels grateful that there is such support and that their group is valued. “It’s really cool,” she says brightly. “It’s a real luxury at NCSS to work with open-minded, flexible people,” she adds.

Individuals in the Next Step group share in a confidential setting and participate in activities like the monthly movie showing, the occasional bowling trip, or the rare excursion to the water park. Heather has been a part of Next Step since 2008. Her first meeting was made a little easier, she remembers, because she knew someone in the group, and it quieted some of her discomfort about showing up to a room full of strangers. Now, she couldn’t feel more comfortable. “The meetings are mostly run by us, peers, not by Randy and Amy,” she notes proudly. “I have confidence in everyone that’s there.”

Even though the group is accommodating and accepting by nature, it doesn’t mean showing up the first time is free of anxieties. Randy, nodding agreeably, eyes Heather as she recalls her first group. He, too, felt nervous when he attended his first group. “You don’t quite know your role right away,” he explains. “I had to learn what I was good at, discover it on my own. Had my good points and things I had to work on. Work on this, accomplish that.” Self-advocacy is something you learn as you go along. Heather and others in the group help with these anxieties by providing welcome baskets with information and goodies.

Amanda, short-haired and bespectacled, chimes in. “The group helps me connect with people. I’ve made a lot of friends. I met some people I otherwise wouldn’t have, and it got me out of my shell.” Finding this kind of genuine support feels incredible for anyone; it offers an even deeper layer of support for individuals with disabilities, who can be at higher risk for social isolation. The peer 

Amy Anderson and Randy Lizotte

support group offers a non-judgmental setting to discuss personal issues and concerns. Sometimes the concerns shared are about services received, and that’s okay. Amy points out that receiving services can something feel controlling, especially if an individual does not feel as if they have a voice to contribute to the conversation about how their services are delivered. These feelings are by no means a slight to providers—who always aim for the highest quality of care—but we all need a little support sometimes in asking for what we need and articulating our fears, desires, and hopes.

As an alternative to asking someone to speak up solely for themselves, Randy and Amy can help to facilitate peer support within an Individual Support Agreement (ISA) meeting. This aspect of peer support really inspires Heather who loves to “help people speak up and help them talk with their case managers about their dreams and goals.” Heather can sit there with her friend and guide them through the difficult conversation. If her peer so chooses, Heather may speak for them based on what they discussed ahead of time.
Someone may feel they need help making their feelings clear, but it doesn’t mean they need to speak alone. Self-advocacy is a choice.

 

 “There’s a real community for people with disabilities now where there wasn’t before,” says Amy. When it comes to advocacy, most of Amy’s background was in crisis management and recovery services. Her work at NCSS within peer advocacy felt new. “I was used to speaking for those who couldn’t, but stepping aside is new and encouraging. Helping people speak up for themselves has really worked for me,” she says.

Randy and Amy both believe that peer services will be the future of care, and that makes sense when considering the ripple effect the groups have had on individuals. There have been fewer calls to crisis because, now, people are calling their friends instead.  “Peer to peer support is the most natural approach in all of our lives,” says Kathy Brown. “NCSS is very fortunate to have such a strong cohesive group of men and women helping to guide our future.”

 

Written by Meredith Vaughn