Across the country, caregivers are sounding the alarm about what Donald Trump and Republicans’ Medicaid cuts mean for the people they love. For families caring for children with complex medical needs, adults with significant disabilities, and aging parents with Alzheimer’s, Medicaid is the difference between stability and catastrophe. It pays for home aides, specialized equipment, therapies, and community-based services that private insurance often refuses to cover. Without it, many say their loved ones would be forced into institutions, pushed into medical bankruptcy, or left without life-saving care. From rural towns to major cities, these families describe lives held together by Medicaid, which allows them to keep their loved ones safe at home. Their stories make clear that for millions of Americans, Medicaid is not optional — it is survival.
Robin Bolduc, Caregiver for her husband, Bruce, and her daughter, Tiffany
- “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.”
- “‘Without Medicaid, I honestly don’t know how we would survive. Bruce would die within months,’ she says.” [The Guardian]
Stacy Staggs, Caregiver for her daughter, Emma
- “‘We would have to take out loans, sell the house and move in with my mom,’ Staggs said. ‘We would go into medical bankruptcy to keep Emma alive.’”
- “For the Staggs family, it’s a matter of life and death. ‘If we get to a place where we’re no longer eligible, I can start a timer on how much longer Emma will be alive,’ Stacy Staggs said. ‘That’s the end of it. It’s not abstract. It’s not hyperbole. It’s the only thing that she can eat. There isn’t any substitute.’”
- “‘That’s the part that has me in real panic,’ Staggs said. ‘When they’re talking about an end date to Medicaid, it’s like saying how long they’re keeping Emma alive.’”[USA Today]
Jamie Davis Smith, Caregiver for her daughter, Claire
- “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.’”
- “‘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.’” [The Guardian]
Lorri Avery, Caregiver for her daughter, Avery
- “‘I think it’s sad that we’re making cuts on the backs of significant disabilities because I think that’s going to end up costing the state more money,’ said Lorri Avery.”
- “Lorri worries about other disabled adults if their families cannot absorb the loss that would come with reductions in the money the state pays to help with care. ‘A lot of them have no support systems, both caretaking or financial,’ said Avery. ‘Some of them will end up on the streets. Some will not get the medical care that they need or will not or the love and care they need at home.’” [CBS]
Alyson Chadwick, Caregiver for her mother
- “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.”
- “‘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.’” [The Guardian]
Susan Llewellyn, Caregiver for her two sons, Jordan and Kade Serumgard
- “‘We had planned all these years to keep the boys with us and to take care of them as a family,’ she said. Llewellyn retired from her job at Bonner General Health in Sandpoint to care for her sons, who are now 25 and 23. ‘Caring for both boys is a full-time job,’ she said.”
- “That care has been made possible through home and community-based services, which provide opportunities for Medicaid members to receive services in their own homes or communities rather than in institutions or other isolated settings. ‘This program has been so vital to us,’ Llewellyn said.” [Coeur d’Alene Press]
Will and Ute Hathaway, Caregivers for Four Non-Family Members in a Certified Family Home
- “‘So certified family homes just kind of fill a gap. So it’s a real need, those people either go to a more expensive facility, or they become homeless and on the street,’ Will Hathaway said.”
- “‘Doing this interview with you in our home, we wouldn’t have been able to do this in our home because if they would get the slightest hint that they would have to move, they would be in a crisis, in a mental crisis,’ she said.”
Holly Richards, Caregiver for her son Ethan, 23
- “‘I don’t have that extra energy to put on anything else but what is happening with my son,’ Richards said. ‘Nobody really knows what goes on inside my home and the heartbreak that I deal with every day, the heartbreak of knowing that my child will never have a normal life.’” [KOAA]
Jill McDonald, Caregiver for her son Luca-Amine, 5
- “Jill has come to rely on federal, state and local support programs to make their life manageable in the small Sonoma County community where she now lives with her son. The resources allow Jill to care for Luca and keep him home. That support is fragile, though, and vulnerable to the whims of federal politics.”
- “Jill receives a monthly check as Luca’s caregiver from In-Home Supportive Services, and that’s her primary income: She uses it to help cover rent and groceries, as well as to pay for extra help with Luca on weekends.” [San Francisco Chronicle]
Alessandra Fabrello, Caregiver for her son Ysadore
- “‘When you say, ‘We’re just cutting provider rates,’ you’re actually cutting access for him for all his needs,’ Fabrello said.”
- “Her savings are almost exhausted, Fabrello said, and she was on the brink of financial ruin until the state began allowing parents to be compensated for caregiving duties. […] ‘As parents, we are indispensable lifelines to our children, and we are struggling to fight for our own survival on top of it,’ Fabrello said.”[NPR]
Andrea Carr, Caregiver for her daughter
- “Without the funding from Medicaid, she said, ‘We could be destitute in two months. We would be out in the street.’”
- “Carr, who takes care of her daughter every day in Sprague River, has spent time trying to connect with politicians who are supporting slashing Medicaid. ‘I’m not understanding what is going through these folks’ minds right now.’ she said. ‘But I know what’s going through mine and it’s sheer, holy terror.’” [Oregon Public Broadcasting]
Lindsay Latham, Caregiver for her son, Calvin
- “If Medicaid no longer covers her son’s attendant care, especially during the summer months when he’s out of school, Latham said all of his caregiving duties will fall to her and she’d become a stay-at-home mom. As the breadwinner of the family, she said, that would mean the Lathams won’t be able to afford updating their home as their son grows up and starts to need a wheelchair and wheelchair-accessible entryways. ‘We’re not on this because we’re trying to play the system,’ Latham said. ‘We’re on it because we need it. He needs it. He deserves to have a fulfilling, rich life in his community.’” [USA Today]
Lynn Weidner, Caregiver for her husband
- “‘I was paycheck to paycheck last year,’ Weidner said. ‘This year, without cutting anything out, I will be in the negative.’”
- “Shortly after enrolling in a plan through Pennie, Weidner said she obtained bloodwork and learned she is anemic. She now manages the condition with frequent testing and iron infusions, which she said keeps her in medical debt. On top of her monthly premium, she pays a monthly sum directly to the hospital for her debt.”
- “She said that she’s considered seeking another job to bring in more money, but with 80 hours spent administering care, there is little time left in the day.” [Bucks County Beacon]
Bradley Ledgerwood, Arkansan with Cerebral Palsy
- “Living with cerebral palsy, I often refer to my caregivers as my ‘hands and feet.’ That’s because while I have a perfectly sound mind, my body is far from it. Doing something as simple as typing these words – let alone eating, going to the bathroom or any other physical activity to take care of myself – can be an immense challenge that requires 24/7 support.”
- “While demand for these programs has grown in recent years, recent federal cuts to Medicaid are undermining them, potentially forcing folks like me around the country into nursing homes. This is happening despite the fact that home care is not just the preferred option for most people, it’s also the more cost-effective one.” [USA Today]