Renee Manfredi: Finding her Calling as an Advocate for People with Intellectual and Developmental Disabilities

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Renee Manfredi has a very busy schedule. When she isn’t on a Zoom call as a board member of the Hawaii State Council on Developmental Disabilities or an athlete representative on the board of Special Olympics Hawaii, she may be making a video about healthy cooking. As a Sargent Shriver International Global Messenger, she frequently speaks about athlete health and how to conduct self-advocacy. To keep fit, Renee recently started doing stand-up paddle boarding, adding it to her sports repertoire of swimming, basketball, soccer and softball. In whatever time is left over, she loves to read, watch movies and sing. She has even sung the National Anthem at Boston’s Fenway Park at the invitation of the Boston Red Sox.

Renee, who was diagnosed with autism at age nine, is adding one more task to her calendar in 2021: She will chair a new Participant Council made up of people with various types of disabilities who will advise researchers at the Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan AbilityLab in Chicago. The council is part of a $4.4 million grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to improve how well home and community-based services work to help people with disabilities have the lives that they want.

In order to improve the work of the research team and all the products they generate, they will be getting regular input from the council that Renee is chairing. “It’s really important for people like myself to be involved in this group, and I’m honored and humbled to be given this opportunity,” says Renee. “We are the ones who have to live with the decisions that these agencies are making for us. Are these things person-centered or not? We also will be able to offer suggestions to make them better.”

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Renee’s life may be full now but it wasn’t always that way. As a baby, she didn’t cuddle and had poor eating and sleeping habits. She frequently twirled her hands and had trouble making eye contact. Renee was diagnosed with Pervasive Developmental Delay – Not Otherwise Specified. The PDD-NOS diagnosis meant she wasn’t entitled to the services she might have received had she been given an Autism diagnosis. In retrospect, Renee’s mother, Michelle Manfredi, believes the doctors didn’t want to label her. “That really closed a lot of doors for Renee ,” says Michelle. “We would love a do-over. It didn’t have to be quite so arduous.”

Renee worked hard in school but had trouble remembering concepts she appeared to have mastered a day earlier. She spent hours on homework with her mother every night and her grades were good. “I was always stressing,” Renee remembers. “Am I going to understand my work today? Why can’t I remember how to do this problem?” To add to her struggles, other kids made fun of her and she didn’t have many friends.

Because her father was in the U.S. Navy, the family moved every three years so Renee was frequently changing schools. It wasn’t until the family moved to Rhode Island and Renee attended a transition academy with other teenagers with developmental disabilities that she found a community and felt accepted. Then the family moved to Hawaii, a state that didn’t have the same kind of support. “It seemed like everyone else was moving forward and I was stuck,” says Renee.

Renee started working as a housekeeper, dog walker and babysitter. Then she joined Special Olympics and began to play basketball. “For the first time, I felt I could walk with my head up, take a breath and look around. There were no demands on me except sportsmanship,” Renee says. “If you’re having trouble with a sport, they just build you up.”

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Renee began playing sports through Special Olympics Hawaii’s year-round program. She was invited to join the Global Messenger program, which trains Special Olympics athletes as public speakers to promote a more inclusive world. She soon was giving talks at various organizations to raise awareness and support of Special Olympics. “The whole experience really helped my self-confidence,” she says. “It was like ‘Wow, I never knew I had that in me.’” In 2019 she was chosen as a Sargent Shriver International Global Messenger for Special Olympics International, where she speaks globally about the health of people with intellectual and developmental disabilities. Her four-year appointment has provided her the opportunity to travel, one of Renee’s passions, and she attended the Special Olympics World Games in Abu Dhabi in 2019.

As her profile rose as an advocate for those with developmental disabilities, Renee began fielding offers to join various organizations. Through a Hawaii state initiative funded by a U.S. government grant called No Wrong Door, she met Steve Lutzky, PhD, a researcher and consultant in the disability field. “Renee has made me rethink what an individual with an intellectual disability is capable of accomplishing,” says Lutzky, President of HCBS Strategies Inc. in Baltimore. “A major barrier that people like Renee face is low expectations.  When Renee sets her own course, she accomplishes things that others thought impossible.” Lutzky, who is part of the CROR grant, recommended Renee as a council member.  After the research team interviewed her, they invited her to chair the council.

Now 35, Renee is looking forward to getting back to travel when the pandemic recedes and hopes to attend the Special Olympics World Winter Games in Kazan, Russia, in 2022. But she has plenty of things to keep her engaged in the meantime. She plans to continue speaking out about the alarming health inequities experienced by people with intellectual and developmental disabilities, who die 20 years earlier than the general population. She also plans to advocate for more services and supports for children with developmental disabilities so others won’t have to go through what she did. “I am so happy to be a part of so many wonderful things, things that I believe are important,” Renee says. “There is so much to be done.”