As Medicaid Awareness Month shines a spotlight on what’s at stake, families and caregivers across the country are raising the alarm about the impact of Donald Trump and Republicans’ health care cuts. They have slashed over $1 trillion from Medicaid and the Affordable Care Act, putting more than 15 million Americans at risk of losing their health care, all to give massive tax breaks to billionaires and big corporations.
In rural towns and major cities, caregivers for seniors and people with disabilities rely on Medicaid to keep their families afloat, making it possible to keep loved ones safe, supported, and at home. It covers critical supports like in-home care, adaptive equipment, therapies, and community-based services. Without these lifelines, many families say they would face devastating choices: institutionalizing loved ones, drowning in medical debt, or going without necessary care altogether. For millions, Medicaid is the backbone of care and dignity, and losing Medicaid because of Republican cuts would be calamitous.
Ellie, Caregiver for Mom, Jane
- “Ellie was a caregiver for her mother, Jane, who had Alzheimer’s, and also her father. When she was no longer able to balance her job and full-time caregiving, she left her job. Without her income, Ellie was unable to financially support both her family and her parents. Medicaid provided the lifeline she needed: paying Ellie to be her mom’s full-time caregiver under an HCBS program. ‘Being able to keep my mom at home where things are familiar, and to be cared for by family, was an incredible gift,’ Ellie says. ‘Medicaid let my parents be cared for by the people who know how to care for them best, in the comfort of home, and in the last stage in their lives where they deserved to be honored and cherished.’” [Justice in Aging]
California
Jean and Charles Franklin, Charles Cares for Jean
- “In October, at the age of 63, Jean was diagnosed with ALS, a debilitating disease that will eventually leave her unable to speak, swallow, or breathe on her own. But Jean’s condition allowed her to enroll in Medicare, the federal health insurance program that covers adults 65 and older and people with disabilities. The diagnosis saved them roughly $1,600 a month in premiums — little comfort as Jean lost her ability to walk, bathe, and dress herself. “It’s kind of morbid that, because of my diagnosis, I got put on Medicare right away, so at least we don’t have to pay that out-of-pocket,” Jean said, sitting in a wheelchair in her living room, a quilt draped over her legs to guard against the intense chills she now often gets. “We’re not going to get buried under this.”
- “This year, the couple will draw $36,000 more than they had anticipated from their retirement savings, most of it to cover Chaz’s insurance premiums. ‘I have a nest egg,’ Chaz said. ‘But there’s a lot of people around here who don’t.’” [KFF Health News]
Colorado
Cindy Colwell, Caregiver for Son, Wyatt
- “‘We’re not asking for more, we’re saying we’ll do the hard work for what you’re giving us, even though it is an underfunded waiver, but don’t cut more. Like we’re all just in survival mode.’ The mothers say reduced support services directly impact their quality of life and ability to maintain their caregiving responsibilities. ‘Our worlds just get smaller and smaller the more you take away from the support,’ Colwell said.” [KOAA]
Kathy Fieber, Caregiver for Son, Ben
- “They get by because Ben receives what are called ‘long-term services and supports’ from the Medicaid program, intended to help adults with severe disabilities live in group homes or with family instead of institutions.”
- “‘Why are we balancing the budget on the most needy people?’” [Colorado Sun]
Georgia
Desserrita Dyson, Owner of Caregiving Service
- “The service, which in many cases can be covered through Medicaid, helps seniors stay in their homes instead of moving into a facility.”
- “‘This allows them to stay home and be in a safe environment and allow their families to not have to worry about taking care of them, or if that family member does end up having to quit their job, it allows them to get paid to take care of the family member versus putting them in a nursing home,’ Dyson said.” [WTXL]
Idaho
Amber Grant, Caregiver for Sons Matty and Luke
- “Amber Grant said any further cuts for the nursing agency that provides care for her 19-year-old son, Matty, could be catastrophic. Through Medicaid, Matty qualifies for 120 hours of in-home private duty nursing care per week. But because of a nursing shortage, he typically receives only about half of that care, and Grant said it would get worse if the nursing agency is subjected to any more reductions.”
- “The potential cuts run even deeper for Grant’s family. Through another optional in-home Medicaid program, she and her husband, Jason, are both eligible to be paid for caring for their older son, Luke. […] Grant said keeping up with the family’s house payments will be nearly impossible if they lose that income, and she said it seems like only a matter of time before some or all of her sons’ in-home care is disrupted. ‘We just hold our breath every legislative session,’ Grant said. ‘I feel like I’m always trying to prove their worth, to prove their value, and it’s exhausting.’” [KFF Health News]
Toni Belknap-Brinegar, Caregiver for Son, Antahn
- “Nursing homes aren’t equipped to properly care for Antahn, Belknap-Brinegar said. He needs to be constantly monitored for seizures. He can’t communicate his needs well, for example, when he has to go to the bathroom. ‘Without the services that he has and the care that he gets now, he would end up in a care center, and frankly, he would die,’ Belknap-Brinegar said.” [KFF Health News]
Ned Fowkes, Caregiver for Daughter, Eva
- “ Cuts to the program that pays for her care would trigger more turnover — or, worse, shutter the agency that staffs the home. “I don’t know what we would do,” Fowkes said. ‘Eventually we’d lose our home. We would be bankrupt. Where would Eva go? Where would her roommate go? Who would care for them?’ ‘It keeps me awake at night,’ he said. ‘Believe me.’” [KFF Health News]
Stephanie Walters, Caregiver for Daughter, Shelby
- “Four days a week, Shelby goes to a day program where she works on skills like expressing her needs and using money. This program is also funded by the state and is potentially on the chopping block. The loss of funding for Shelby’s day program and for the care she receives at home would be devastating for both of her and her mother. ‘I’d probably have to quit my job. I need to make sure she can spend time with friends and her boyfriend, but she would still be more socially isolated,’ Walters said. ‘I’d have to get some kind of job where I can work from home so I could still pay the mortgage, for groceries, and everything else in this terrible economy.’” [The 19th]
James Baugh, Caregiver for Son, Gabriel
- “He needs assistance with every aspect of his daily life. Idaho’s home care program pays for people to come in and do all of that. ‘That kind of one-to-one care is far beyond what I can pay for with my social security,’ Baugh said. Gabriel is able to live at home because of Idaho’s home care program. If the program ceased to exist, nursing homes would reject Gabriel, according to Baugh. His medical needs are too complex. ‘He would need to go to a long-term acute nursing hospital, which would be terrible for him. I don’t even know if there are any openings. There’s maybe one or two across the state,’ Baugh said. There are safety issues with that kind of long-term hospitalization; Gabriel can’t push a nurse’s call button if something is wrong.” [The 19th]
Iowa
Leisa and Kent Walker, Caregiver for Son, Sam
- “His parents say that without the in-home services, their son would need to move to a specialized residential facility in another state. Sending him away would break their hearts and cost taxpayers much more money.”
- “Leisa Walker has heard Trump administration officials claim the national Medicaid cuts are intended to reduce waste, fraud, and abuse. That’s not how it will play out, she said. ‘These are real people, real families, and this causes real suffering when you do this to people,’ she said. ‘It’s a very scary time.’”
- “She said her family would try to keep his main caregiver employed under the planned Medicaid reduction but would have to drop others who cover nights and weekends. She said no residential facility near their southern Iowa home could address her son’s complicated needs. She said a case manager told her that a Florida facility might be the closest one that could safely handle him. Leisa Walker testified that the state’s Medicaid program would pay about $22,000 per month to put him in an institution, more than double what the program spends on his home care.” [Iowa Capital Dispatch]
Missouri
Victoria McMullen, Caregiver for Son, Ron
- “McMullen said the program allows her husband to be compensated when care staff aren’t available for their 46-year-old son, who has cerebral palsy and autism. ‘Our point is to make legislators know, ‘This is not the service to cut, because it will cost you more in the end,’ McMullen said.” @protectourcare.org
- “McMullen said she worries about decisions her family would have to make if her son’s self-directed services budget is reduced. Currently, he attends physical therapy once a week. Even though he still needs care staff, it allows him to do more for himself. If there’s a reduction, McMullen said, ‘we’ll have to make a decision. Maybe it’s physical therapy every other week.’” [Missouri Independent]
Larry Opinsky, Caregiver for Daughter, Lilly
- “Opinsky said his 26-year-old daughter, who is non-ambulatory and nonverbal, can be active in her community because the self-directed services program enables the family to hire care staff for her.”
- “‘If community supports aren’t funded,’ Opinsky said, ‘our population, the people that are on this call today, receiving self directed services, we’re the ones that are going to be added to that [institutionalization] conversation.’” [Missouri Independent]
North Carolina
Corey Briskey, Caregiver for Son
- “Despite being mentally, emotionally, and physically exhausted, I couldn’t stop. I needed to be there for my son’s around-the-clock care. As a result, my own health also suffered from years of caregiving without proper support. I developed food sensitivities, eczema, and debilitating brain fog that I couldn’t overcome even with a few good nights of sleep. I reaped the benefits of Medicaid immediately—and everything changed for the better.
- “Most importantly, I hired respite care. The day the respite worker arrived, I felt something I hadn’t felt in years: relief. I could finally rest, spend time with my husband and daughter, or simply take a moment for myself while someone else safely watched my son. Medicaid provided me with a chance to recover from years of burnout. For the first time in five years, I stepped out of survival mode and lived.” [NC Newsline]
Janey Porter, Caregiver for Daughter, Deanna
- “‘All of her needs, from dressing, bathing, mobility, basically everything, she has to have someone help her,’ Porter said. Porter fears that the looming cuts will cause her daughter to lose access to her benefits and force her out of her home and into an institution. ‘Any parent that has a child with a serious illness and children who are disabled, that is a huge worry for us. Our main worry,’ she said.”
- “For Medicaid patients and their families, these decisions have real-world implications. ‘They’re just making families like mine face impossible choices,’ Porter said.” [Cardinal & Pine]
Aletha Ward, Caregiver for Son, Jered
- “Ward says she worries about what will happen to Jered if her hours are cut, and his caregiver lifeline is taken away. ‘If I can’t keep doing this, I don’t know how we will be able to keep someone here to work with him. It’s not easy taking care of him,’ she said. ‘I know for a fact he would not be able to stay [at home].’” [Cardinal & Pine]
Washington, D.C.
Jamie Davis Smith, Caregiver for 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]