Whether taking care of an older parent, a relative with disabilities or a child with a serious medical condition, family caregivers in the US are nervous and afraid of upcoming cuts to Medicaid – including those resulting from the Donald Trump-backed legislation known as the One Big Beautiful Bill Act.
The program, which serves low-income families, pregnant women, children, seniors and people with disabilities, enables more than 70 million people to receive critical services while alleviating some of the financial demands on caregivers. But now the bill could chip away at that support with cuts that include ending the temporary incentive for states to adopt the Medicaid expansion, implementing mandatory work requirements (with some exceptions), more frequent eligibility redeterminations for those covered under the Medicaid expansion, and reducing state funding that could force cuts to state-funded home and community-based services for older adults.
Other safety net programs, such as Snap and Section 8, are also in Republican crosshairs and have been targeted by the legislation, and many low-income families rely on a combination of safety net programs. Some families say they feel as if they are being attacked from all directions.
We spoke to several family caregivers to find out what they fear most about the Medicaid changes looming on the horizon.
Robin Bolduc, 69, Colorado
Bolduc’s husband is a full quadriplegic and uses a ventilator to breathe due to primary progressive MS. Her daughter has Down’s syndrome with multiple underlying medical conditions. Both Bruce and Tiffany use home health services.
“Bruce lives with me and requires 24/7 line-of-sight care,” Bolduc says, noting that Medicaid pays for her husband’s attendant care, as well as disposable medical supplies and medical equipment such as a wheelchair, ventilator, oxygen and shower chair. “Medicaid allows him to live in our home rather than a nursing home or in a hospital. He can be an important person in the lives of me, his children and his grandchildren.”
Bolduc’s daughter Tiffany lives in her own apartment with a live-in caregiver also paid through Medicaid. In a typical month, she has multiple doctor appointments and several outpatient medical procedures – which are generally primarily paid through Medicare, but the co-pays are paid through Medicaid. (People who have both Medicare and Medicaid coverage are considered “dually eligible” and Medicare acts as the primary insurance.) “Medicaid allows her to work, live independently and be a participating member of her community,” says Bolduc.
“In Colorado, we have more support for family caregivers than many states. Unfortunately, many families do not have access to all the resources available. It is often a maze of bureaucracy to access.”
Bolduc estimates that she spends at least eight to 10 hours a month dealing with insurance and paperwork, sometimes providing the same information to multiple systems. She also sometimes must go through the appeals process as a result of administrative mistakes on the part of one or more agencies, and must get recertified every year.
Medicaid has been a godsend that Bolduc says lets her family enjoy a good quality of life, despite the medical challenges. “We have friends and family. We interact with neighbors. We have our dogs. We have a good life despite our challenges,” she says.
“And we provide employment for five people who work as attendants for Bruce and Tiffany. While I provide the vast majority of Bruce’s care and oversee Tiffany’s care, I simply cannot provide that level of care without help. And all of their attendants would lose their job.”
The potential gutting of Medicaid is terrifying to Bolduc. “Without Medicaid, I honestly don’t know how we would survive. Bruce would die within months,” she says.
Caregiver to spouse, Bruce Goguen (72), and daughter Tiffany Zimenoff (42)
Jamie Davis Smith, 40s, Washington DC
Davis Smith’s daughter, Claire, was born with a chromosome-related condition that causes multiple disabilities and significant medical conditions.
Claire is non-verbal, uses a wheelchair and needs support for every part of her day, from getting dressed in the morning to eating dinner at night. “Yet, she is very happy,” Davis Smith says. “She loves going for walks, watching movies with her siblings, going in the pool and eating ice-cream.”
Davis Smith says her daughter needs constant support for daily tasks such as brushing her teeth and taking medications, and needs someone to take her to doctor’s appointments and handle any medical emergencies, so she has an aide both at school and at home. She also requires specialized equipment, including a harness, that helps keep her safe in the car.
The work performed by family caregivers is often overlooked, and Davis Smith says it can take a toll: “There is a shortage of caregivers available for home and community support. Since we can never count on someone being available, a parent always needs to be able to drop everything to care for her. I had to leave my career, and it’s hard to plan anything.”
Like many families, Davis Smith’s family relies on a combination of programs and resources – which in their case includes private insurance – to obtain the services they need. Medicaid can help fill in the gaps and cover some of the costs that would otherwise be overwhelming. “Even though Claire has excellent private insurance, it does not cover the home and community supports she needs to stay at home, such as an aide and specialized equipment. Without Medicaid, there is a real chance Claire would wind up in an institution, which has worse outcomes and is more expensive,” Davis Smith says.
“Claire’s needs have shaped my life. I left my career, and meeting Claire’s needs has impacted every part of my family’s life, from where we live to our daily routine. Given that Claire needs constant supervision all day, every day, we could not survive without the services Medicaid helps us access.”
Caregiver to her daughter Claire Smith, 19
Alyson Chadwick, 45, Stony Brook, New York
Chadwick’s mother has Alzheimer’s and lived with Chadwick for two years but is now at an assisted living facility – a situation Chadwick fears could now be in jeopardy because of the ripple effect that Medicaid cuts may have on these facilities. “I am worried they will lose funding from Medicaid and our bill will go up,” she says.
Her mother, who is currently applying for Medicaid, needs support for countless daily activities, Chadwick says. “She needs help with her medication, meals, picking out her clothes, going to the bathroom, etc. Most things she does every day require help from other people. She can’t use the phone without help.”
Chadwick says there’s already not enough support for family caregivers and their loved ones, a situation that will probably get worse in the wake of Medicaid cuts. Her time as a full-time caregiver took a toll on her in many ways, Chadwick says. “When my mom was living with me, all of my own medical issues were completely ignored. I didn’t have the time to go to my doctor’s appointments. Moreover, after spending so much time with her at her appointments, the last thing I wanted to do was spend time at more doctor’s offices.”
There’s also the isolation that many family caregivers face, something Chadwick says is not discussed enough – and which would become worse if caregivers lose access to support services. This in turn could put greater strain on the caregivers’ own mental health. “I felt very isolated because I couldn’t leave her alone much,” she says. “Also, she would wake me up in the middle of the night, so I wasn’t sleeping well. I was depressed and anxious all the time.”
Chadwick says Medicaid is a critical program that helps people from a range of backgrounds and financial situations. “People tend to think Medicaid is for poor people in the inner city, but it helps a lot of middle-class families who just want their loved ones to be cared for,” she says. “With an ageing population, we have to have a better way to support our elders and their families.”
Family caregiver for her mother
