Caregivers express concerns about facing challenges due to impending Medicaid reductions.

Robin Bolduc, 69, Colorado

Bolduc’s husband is quadriplegic and relies on a ventilator due to primary progressive MS. Her daughter has Down syndrome along with several related health issues. They both receive home health services.

“Bruce lives with me and requires 24/7 care,” Bolduc explains. “Medicaid makes it possible for him to stay at home instead of being placed in a nursing home. He remains an important part of our family’s life.”

Tiffany lives independently in her apartment with a caregiver funded through Medicaid. She attends various medical appointments each month, which are mainly covered by Medicare, with some costs picked up by Medicaid. “Medicaid allows her to work and be a part of the community,” Bolduc adds.

“In Colorado, there’s better support for family caregivers compared to many other states. However, many families still struggle to find the resources they need; navigating the system can be quite the challenge.”

Bolduc finds herself spending 8-10 hours a month dealing with insurance and paperwork, often having to provide the same information multiple times due to errors in the system. “It’s frustrating to have to go through the appeal process every year,” she notes.

Despite the challenges, Bolduc believes Medicaid has been a blessing for her family. “We engage with friends and neighbors, take care of our dogs, and overall, we manage to have a good life,” she shares.

“We even employ five people who assist with Bruce and Tiffany’s care. I can’t do this alone,” she says. She fears the possible cuts to Medicaid: “Without it, we honestly don’t know how we’d manage. Bruce wouldn’t make it very long.”

Jamie Davis Smith, 40s, Washington, DC

Claire has multiple disorders and a chromosomal condition that leads to serious health issues. She is nonverbal and uses a wheelchair, requiring help throughout the day. “Still, she’s quite happy,” Davis Smith reflects. “She enjoys walks, movie nights with her siblings, pool trips, and of course, ice cream.”

Davis Smith mentions needing constant support for daily tasks, from brushing teeth to managing medical emergencies. Specialized equipment, like harnesses, is a necessity.

She notes how family caregivers often go unnoticed. “There’s a severe shortage of people willing to help at home. Parents always need to step in; you can’t rely on others.”

Her family juggles various support programs, including private insurance, to cover necessary services. Medicaid is essential to covering costs that exceed what private insurance offers. “Although Claire has good private insurance, it doesn’t cover community support or aides needed for her to be home. Without Medicaid, she could easily end up in an institution,” Davis Smith cautions.

“Claire’s needs shape my entire life. I’ve left my career behind, and nearly every aspect of our daily routine revolves around her care,” she reveals.

Allison Chadwick, 45, Stony Brook, New York

Chadwick’s mother, who has Alzheimer’s, lived with her for two years but is now in a support facility. Chadwick worries about potential Medicaid cuts affecting these facilities. “I’m concerned they’ll face funding reductions, which would increase our costs,” she admits.

Her mother needs assistance with countless daily activities, from taking medication to getting dressed and using the bathroom. “Most of what she does daily requires help. She struggles with basic tasks, like using the phone,” Chadwick explains.

She feels the lack of adequate support for family caregivers is concerning. “My time devoted to her made me neglect my own health. I often skipped my doctor appointments because I was so busy attending to her,” she says.

Chadwick also highlights the isolation many caregivers experience, a reality that isn’t widely discussed. “If access to support services diminishes, it could seriously affect caregiver mental health. I felt really isolated; leaving her alone wasn’t an option. Plus, she’d wake me at night, impacting my sleep. It caused constant anxiety and depression,” she shares.

Chadwick believes Medicaid is crucial for families from various economic backgrounds. “Many view Medicaid as only for lower-income individuals, but it helps numerous middle-class families wishing to care for loved ones. There’s an urgent need for improved support for the elderly and their families,” she concludes.