Illinois Couple Becomes Strong Voice for Preserving Medicaid, Say Funding is ‘Vital’ for Son’s Future
For some people, retirement is an opportunity to travel, pick up a new hobby or just relax.
But when Dan and Cheryl Kinsinger retired from their jobs at Caterpillar Inc., “advocacy” was also part of the couple’s to-do list. Possessing a passion for public speaking, Cheryl was eager to become a stronger voice for her son, Lance, and others with intellectual and developmental disabilities (IDD).
“When I worked full time, I didn’t have the time and energy to advocate like I wanted to,” she said.
In the 20 years since her retirement, Cheryl is making up for lost time through her involvement as a member of Autism organizations and advocacy groups, including Mosaic Allied Voices.
“I get a great deal of satisfaction from doing it,” the Peoria, Illinois resident said of her participation in community events, meetings and educational programs. “I’m not afraid of public speaking. I did a lot of it when I was working at Caterpillar.”
Cheryl and Dan are also ready and willing to send a letter, email, or better yet, meet in person with their local, state and federal representatives to share Lance’s story and advocate for the services he receives. As the person who “brought him into this world,” Cheryl said she enjoys speaking out on her son’s behalf.
With possible changes to Medicaid coverage being discussed by Congress, Cheryl and Dan joined Mosaic’s effort to preserve the program. Their efforts included meeting with U.S. Rep. Darin LaHood and attending a press conference given by Illinois Gov. JB Pritzker.
Nearly 6 million people in the U.S. rely on Medicaid Long Term Services and Supports. Of those, 4 million receive home- and community-based services (HCBS), which enable people to live in their community, rather than moving to a facility for care. At Mosaic, more than 4,500 people with IDD and other diverse needs receive HCBS, including Cheryl and Dan’s son Lance.
Cheryl said Lance, 49, is thriving thanks to the care he receives through the Mosaic at Home program. She said in the five years he has been receiving care at a host home in Rockford, Illinois, his Home Provider and a housemate have become family and they enjoy volunteering and exploring the area.
“Lance is the happiest when he’s the busiest,” Cheryl said. “He loves to go to places. He’s very enthusiastic about that.”
Over the years, Lance’s care has included residential school and group home settings. He lived at home until he was 15, but Cheryl said she and Dan realized their son needed more assistance than they and the local school district could provide.
“We were fortunate to get him into a residential school in Wichita, Kansas,” Cheryl said. “That really helped him develop and he did really well out there.”
When he finished high school, he began living at a group home in Rockford. He also attended a day service program until the COVID-19 pandemic temporarily shut down services. When the program reopened, Cheryl said Lance didn’t want to go back, so they looked for other options and found the Mosaic at Home program and a familiar face to provide care.
“His Home Provider used to be the manager of their group home, so she knew Lance and his other housemate before taking them into her home,” Cheryl said.
Cheryl said she and Dan are seeing improvements in Lance’s reading and language skills, which she credits to the activities and personalized services he receives and his interactions with a housemate. She hopes the progress he has and continues to make will allow him to work, which has been challenging up to this point.
With her son’s care in good hands, Cheryl continues to focus on sharing why Medicaid coverage is vital to his future. Her involvement with Mosaic Allied Voices has led to more opportunities to share Lance’s story. She’s also gained new friendships with people who share her passion for advocacy.
Although the U.S. House passed a sweeping budget bill that includes nearly $1 trillion in cuts to Medicaid, advocacy efforts like Cheryl and Dan’s made a difference in keeping catastrophic proposals related to block grants, per capita caps and a change in the federal match out of the final budget.
Thankful for the opportunity to speak to as many people as she could, Cheryl believes the representatives and staff that she met with were responsive to her concerns about Lance’s living situation and his services being affected. For Lance, Medicaid cuts or changes could require him to move to a state institution, a change Cheryl believes would stall the progress he has made.
“We aren’t in a position to take him back into our home,” she said. “I don’t know what will happen.”
As Mosaic continues to process the impacts of the budget, the commitment to love and serve all people remains.
While Cheryl understands that not everyone is as comfortable with public speaking as she is, she encourages others to get involved in their own way.
“Join Mosaic Allied Voices or get connected with your local Mosaic office,” she said. “Find what works for you and ask for help, if needed. We can and should speak up.”