Center for Public Health Workforce Development
PROFILE: LIZZY KEARNS AND FAMILY
Champions for Lizzy
“She was phenomenal.” That’s how Todd Cooper describes his aunt, Lizzy. When Lizzy was born, the doctors predicted she’d never be able to walk, talk, or take care of herself and they wanted to put her in a state-run facility. Thankfully, Lizzy’s mother believed otherwise, and raised her to have a full and happy life. Not only did Lizzy walk, talk, and take care of herself, she also cared for others. Todd says Lizzy helped raise him, spending time at Lizzy’s house after school and on weekends. Lizzy and her mother were pioneers in community living before it was a concept. Lizzy taught Todd much of what there is to know about in life. Everything from crossing the street to managing his emotions in difficult social situations. She was generous and loving with all who knew her. Lizzy lived in her family home for 75 years. However, a stroke forced Lizzy to move from the family home to a group home. Todd and his mother were elated to find a group home for Lizzy near their house. But this new group home wasn’t what it promised to be. After moving in, restrictions were imposed on what Lizzy could and could not do which were not discussed during the intake process. Her family saw that Lizzy’s voice was not being
heard, and knew that she would be happier living back at home with her family. It was important that Lizzy had the opportunity to enjoy her life the way she chose. Todd remembered he’d heard about CLEP at a vendor fair and gave Natalie Trump a call. For the next 14 months, the CLEP team worked to support Lizzy, her sister Connie, and Todd as they explored how all of Lizzy’s needs could be met through services delivered in her family’s home – a process called self-direction. Reflecting on this difficult time, Todd cites Natalie Trump and Mary Kneuer as being the tireless champions that they needed on their side as they fought to give Lizzy the quality of life she wanted. As Todd summarizes, “Natalie and Mary gave our family choices in our effort to get services coordinated for Lizzy in her home.“ As a result, Todd says that Lizzy was able to live her last few months of her life at home, surrounded by family, engaged in the activities she enjoyed, and have a quality of life that was measurably improved. Todd can’t say enough about how CLEP significantly improved Lizzy’s life, and what this meant to him, Lizzy, and her family.
PROFILE: SUSAN A.
Uncommon Support When It Was Needed Most
When Susan* and her husband needed to move their son Jason* back to New Jersey after several years living in an out-of-state residential facility, they didn’t know where to begin. They wanted to find a group home for him that would sufficiently meet his needs and at the same time embrace his strengths. A place where Jason could experience all that life has to offer, close to family and in a community where he could thrive. A place that feels like a home. They tried contacting different homes in New Jersey, sharing their son’s profile in the hopes that a good match could be found. When they were unsuccessful in their search, they called CLEP. As Susan explains, Natalie Trump, Melanie McGackin, Mary Kneuer, and Maria Schiavello “rallied around to support my husband and I.” Together, they began by creating a one-page profile of Jason to send to different agencies. Rather than focusing on Jason’s support needs, they crafted one that highlighted Jason’s strengths and abilities. Then they helped the couple research and visit different group homes, in search of the best match for their son.
Susan appreciated that the CLEP team helped her family think through different questions that could arise with each agency. “They helped keep us calm so we could ride the roller coaster. It was very helpful to know we were working with parents who know the system and know what it’s like to want the best for your child.” Today, Jason is happily living half an hour from his parents. According to Susan, it’s less of a traditional group home and feels more like a community. Susan and her husband are thrilled to have found a place that offers so much and is such a good match for their son. “The women who work at CLEP know what it’s like. They really understand the stress and the experience. I think they work extra hard to be supportive. This is a system where parents feel very alone in their journey, so to find parents who are in position to be so helpful and to understand what’s at stake and how hard this is. That’s uncommon.”
2022-2023 Academic Year Impact Report Learn more about us at clep.rutgers.edu
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*Names have been changed to maintain anonymity
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