During this Developmental Disabilities Awareness Month, millions of Americans with developmental disabilities and their families are confronting a growing threat as Republican attacks on Medicaid and other health coverage are putting the health care they rely on in jeopardy. Donald Trump and Republicans slashed over $1 trillion from Medicaid and the Affordable Care Act (ACA), ripping coverage from more than 15 million people and forcing rural hospitals to close, all to give massive tax breaks to billionaires and big corporations. On top of that, they ended the health care tax credits that helped nearly 22 million families afford coverage.
As a result, people with developmental disabilities are losing access to the services that make everyday life easier, from doctor’s visits and prescription medications to therapies and home- and community-based services. These cuts aren’t just numbers on a page. They are a direct threat to the health, independence, and dignity of millions of Americans with developmental disabilities, their families, and the caregivers who support them. For millions of families, the loss of these services is nothing less than a crisis.
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]
Stephanie Walters, Meridian, ID, Daughter, Shelby, has Cerebral Palsy
- “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]
Lynn Weidner, Allentown, PA, Caregiver for partner who has Cerebral Palsy
- “She re-enrolled this year with a premium increase of $300 per month (from $400 to $700) due to the drop in subsidies. ‘I was paycheck to paycheck last year,’ Weidner said. ‘This year, without cutting anything out, I will be in the negative.’”
- “Recently she contacted her cable company and downgraded her Internet service. In addition, she said she has had to save pills at the end of her prescriptions to prepare for the next emergency, and make sacrifices at the grocery store to make ends meet. […] 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]
Julia Tilley, Harrisburg, PA, Daughter has Autism
- “‘There’s really no way to prepare for it,’ Tilley said. ‘I mean, how do you suddenly come up with $15,000 more a year? My husband can’t work more because he has a head injury. I work full-time time taking care of my daughter. It’s not like I can go get another job. So we’re stuck.’”
- “‘My daughter’s everything is funded through Medicaid,’ Tilley said. ‘Her medical insurance, her speech therapy, the physical therapy, her counseling, her medications. She’s on seven different medications a day. And my pay is funded through Medicaid. So that in and of itself is very precarious. There’s just no way that we could ever afford all of the services that she requires.’” [PennLive]
Robyn Stanicki, Unity, ME, Son, Evan, has Autism
- “Stanicki said she received a letter in January that her 14-year-old son, Evan, who is diagnosed with autism, will no longer be eligible for MaineCare. Each week, Evan receives around 16 hours of behavioral health therapy, which Stanicki says is only available through MaineCare. She said she does not know why her son lost eligibility.”
- “‘Honestly we would probably fall apart,’ she wrote in a text message. ‘I would be trying to find loopholes or do anything to get back on MaineCare, up to and including taking a job at McDonald’s for the minimum amount of time that I would need to work to get under the qualifying threshold.’” [Lewiston Sun Journal]
Amber Grant, ID, Son, Matty, has Cerebral Palsy, Son, Luke, has Autism and Epilepsy
- “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]
Susan Llewellyn, ID, Sons, Jordan and Kade, have Autism
- “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.” [Coeur d’Alene Press]
Tom Hemker, ID, Son, Paul, has Down Syndrome
- “‘My wife and I are parents of a 39-year-old man that has Down Syndrome and occupational therapy,’ Hemker said. ‘All the therapies that he’s received since birth have made it so that he has a job now.’”
- “‘We’re really concerned that the cuts to therapies as well as, you know, community-based housing for these guys, so they can be out in the community and not in institutions,’ Hemker said.” [KTVB]
Victoria McMullen, MO, Son has Cerebral Palsy and Autism
- “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.” [Missouri Independent]
Kathy Fieber, CO, Son, Ben, has Down Syndrome and Autism
- “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]
Jamie Davis Smith, Washington, D.C., Daughter, Claire, has chromosome-related condition
- “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, CO, 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]
Cindy Colwell, CO, Son, Wyatt, has Cerebral Palsy
- “‘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]
Holly Richards, CO, Caregiver for her son, Ethan
- “‘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]