How Would Cuts to Medicaid Impact Children, Teens and Adults with Disabilities?

Congress is currently discussing cuts to Medicare and Medicaid programs. Some of these funding cuts may not seem unreasonable on the surface. However, less funding for these programs would be devastating to many individuals and families with disabilities. 

In Minnesota, the Medicaid program is Medical Assistance (MA), and disability waivers are a part of Minnesota’s MA program. The Minnesota Department of Human Services states, “Medicaid home and community-based service (HCBS) waivers afford states the flexibility to develop and implement creative alternatives to placing Medicaid-eligible people in hospitals, nursing facilities or Intermediate Care Facilities for Persons with Developmental Disabilities (ICFs/DD). HCBS waivers allow states to put together various service options that are not available under regular Medical Assistance.” In other words, disability waivers allow many families and individuals more flexibility with the services they can access. It provides them with options, rather than having none, like was often the case in the past.

The funding cuts being proposed to Medicaid are also significant. The New York Times states, “The tax and spending bill passed by House Republicans early Thursday [May 22] includes hundreds of provisions and would add an estimated $3.3 trillion to the national debt by extending and expanding large tax cuts, partially offset by cuts to Medicaid, food benefits and other programs.” Per the Times, the proposed cuts to Medicaid total $771.6 billion.

The impact would be widespread, harming many individuals and families with disabilities in the U.S. The Arc states, “Medicaid is the cornerstone of daily life for over 10 million children and adults with disabilities, funding 77% of essential services for people with intellectual and developmental disabilities.”

In some Fraser programs, like Supervised and Supportive Living homes and apartments, 100% of the individuals use MA and disability waivers to pay for supports and services. Without these benefits, many wouldn’t have a way to pay for needed care.

Reduced Medicaid coverage would deeply impact Minnesotans like Beth Stevens and her family and Kari D'averill and her family.

Beth, Sean and Lauren Stevens

Lauren Stevens loves music, going out to eat, and attending plays. She also enjoys spending time outside and shopping. Like many, Lauren also likes to people-watch. She is 27 years old and lives in her own apartment with 100% support from her disability waiver.

Lauren also has Rett syndrome. The International Rett Syndrome Foundation states, “Rett syndrome is a rare neurological disorder caused by genetic mutations that disrupt brain development, primarily affecting girls.” Infants with Rett syndrome often develop typically for a while, but then there’s a regression. Or, they start to develop and then begin missing developmental milestones.

In Lauren’s case, she never crawled or walked and only talked a little. When she was 2, she was diagnosed with Rett syndrome. At the time, it was a behavioral diagnosis, though now it’s diagnosed with a blood test.

Today, Lauren is nonverbal and uses a wheelchair. She has significant physical impairments, but she is cognitively intact, says her mom, Beth. She graduated from high school. She communicates through an electronic communication device, a yes/no card and her excellent nonverbal communication skills.

Lauren’s apartment is 8 minutes from her parents' house. Moving into her apartment was a slow, careful transition over two to three years, says Beth. The main reason Lauren can live independently is that she receives in-home care for 24 hours a day, including night-time supervision. Lauren is dependent on her caregiver for daily living. Her in-home care caregiver helps her with tasks like feeding, toileting, bathing, taking her medicine, and other medical needs. They also cook for her and maintain her apartment.

Her caregiver takes Lauren out into the community and helps her socialize with others. They might take a trip to the mall one day or the botanical gardens the next.

“Everybody has a purpose in life. Lauren loves getting out in the world, and her caregiver helps her do that. She also loves living in her own apartment and receiving in-home care—absolutely loves it. It allows Lauren her independence and to live her life to the fullest,” says Beth. “Her disability waiver gives her independence. It’s what’s right for Lauren and for us, her family.”

A disability waiver pays for many of the services and care that support Lauren. It pays for her around-the-clock in-home care services and a small part of her housing costs (Beth and Sean pay the rest). The waiver covers the cost of her Fraser case manager, who helps Lauren and her family find more resources and support services. It also paid for converting a van into a wheelchair van for Lauren’s transportation.

Beth and Sean have private pay insurance, which pays for some of Lauren’s medical care, but it doesn’t include coverage for her in-home care. Lauren’s disability waiver covers what their private insurance won’t pay, including some co-pays for her numerous doctor and specialist visits.  Beth estimates that the disability waiver covers about $500,000 in caregiving costs for Lauren’s care yearly. However, that number is just for her in-home care services.

Like most Americans, Beth can’t afford to pay half a million dollars a year for Lauren’s care out of pocket. Nor is having Lauren move back home a solution. Beth and Sean are getting older. They won’t be able to care for Lauren forever. Nor would Beth ask her other two children—her 23-year-old daughter and a 19-year-old son—to take up Lauren’s care. They, too, have responsibilities and commitments.

Kari, Delwin, Levi and Salomé D'averill

Kari D'averill and her partner, Delwin, are in a similar position. They both work full time. Kari works in a level 4 special education school as a nurse and behavioralist, and Delwin works in the nonprofit sector. They have two children, Levi, who is 17, and Salomé, who is 13. Levi has autism, attention-deficit/hyperactivity disorder (ADHD) and mild ataxic cerebral palsy. He also has dyslexia and difficulty with writing and spelling. Salomé has autism, ADHD, anxiety and OCD. She has learning differences, which include difficulty with math.

A disability waiver pays for a personal care aide (PCA), who is there with the children after school. When they were younger, Levi and Salomé had a PCA before and after school. 

“Without the waiver, one of us would not be able to work,” says Kari. “Most people don’t expect to pay for childcare for 18 years, but for our kids, it’s necessary. Our PCA makes sure they’re safe, gives them snacks, and provides lots of hands-on teaching.”

Kari also has private pay insurance, but like Beth’s family, it doesn’t cover many of her children’s expenses. Levi and Salomé both take about five medications each, and they would have to pay out of pocket for these, since the family reaches their insurance cap quickly. However, a disability waiver covers the costs of these prescriptions.

Over the years, the children have needed numerous supports, like vision therapy and growth hormone treatments, which weren’t covered under Kari’s insurance. Their disability waivers paid for this care. Disability waivers also allowed the children to have some alternative therapies, which have helped them immensely, says Kari.

Salomé did hippotherapy to work on her speech and motor movements. The American Hippotherapy Association states, “The term hippotherapy refers to how occupational therapy, physical therapy and speech-language pathology professionals use evidence-based practice and clinical reasoning in the purposeful manipulation of equine movement as a therapy tool to engage sensory, neuromotor, and cognitive systems to promote functional outcomes.” In other words, hippotherapy is a kind of horse-riding therapy that can help children strengthen fine and gross motor movements and provide calming sensory input. Hippotherapy also supports speech development.

This was the case for Salomé. Hippotherapy helped build her confidence, become more assertive, and strengthen her core motor skills. It also helped her speech. Plus, she loves riding horses.

“Salomé used to be selectively mute in public,” says Kari. “Hippotherapy gave her more confidence, because she realized if she can handle a big horse, she can handle other things. She has learned to advocate and speak up for herself in public settings. She’s also become a bit of an animal whisperer.”

Disability waivers paid for private swim lessons for Levi and Salomé. Since both children have autism, being able to swim is important for their safety. Due to their needs, they needed one-on-one support to learn to swim.

Learning to swim also allows them to participate in more community activities. Levi is on his high school swim team, and Salomé swims with the Special Olympics.

Private swim lessons cost $100 an hour, per child. Hippotherapy lessons are $120 an hour. Paying for these lessons for both children just wouldn’t have been possible for Kari and Delwin.

When Salomé was young, she was prone to running off. “We’d blink, and she would be gone,” says Kari. “I’d wake up in the morning, and she would be in the backyard, or sitting on the steps outside, saying hello to the early morning runners. It wasn’t safe.”  

A disability waiver paid to fence the family’s backyard and put combination locks on the doors. Disability waivers have also paid for seamless hug shirts, which helped Levi and Salomé deal with sensory issues and focus in school.

Then there were the special shoes that were built for Levi’s ankle foot orthotics (AFOs). Before Levi had specialized shoes, he was going through a pair of shoes every month because the hard plastic and metal of the AFOS ruined shoes quickly.

“There are just so many little things that add up cost-wise, over a period of years,” says Kari.

All these supports over the years have helped Levi and Salomé become much more independent. Levi has a 3.5 GPA in regular high school classes. He enjoys science, board games and outside adventures. He plays percussion and tennis.

“I call him my absent-minded professor. He works three times as hard as his peers to stay caught up, and his work ethic is off the charts,” says Kari.

Salomé is musical and has a natural sense of rhythm. She is a fast runner, has an incredible memory and loves bright colors.

“She knows every dog, cat, and gerbil in the neighborhood. She is hyperattuned to emotions and gives the best hugs ever,” says Kari.

Why is disability care so vulnerable to cost-cutting?

Many families, like Kari’s and Beth’s, rely on Medicaid for their children’s care. KFF, a leading health policy organization, states, “Medicaid is the primary program providing comprehensive health and long-term care coverage to one in three with disabilities, including 2.3 million children, 8.8 million working-age adults and 4.4 million adults ages 65 and older.”

Like Beth’s daughter, Lauren, the cost of care for many of these individuals is significant. “KFF estimates that nearly 6 million people use Medicaid long-term care and spending for those people is much higher than spending for other enrollees, with the costs of enrollees who use institutional care nearing $50,000 each year. Medicaid is the primary payer of long-term care because it is generally not covered by Medicare or private health insurance. In comparison, average Medicaid spending for enrollees who do not use long-term care is under $5,000. Because of the higher spending, enrollees who use long-term care comprise 6% of Medicaid enrollment but 34% of Medicaid spending.”

The high cost of these services also makes them a likely target for Medicaid cost-cutting, particularly since these cuts are supposed to take place over a period of years. KFF states, “Because they have high levels of health care spending, people with disabilities may be particularly vulnerable if federal spending is capped.”

Beth and her family need a long-term solution for Lauren, like the care she receives through her disability waiver.

“The decisions that politicians are making about Medicaid are going to impact a whole community of people. What are they going to do with them? People can’t pay for the daily care of these individuals. Who would care for them?” says Beth.

Kari agrees. Many of her students rely on disability waivers for care. DD waivers allow children to access resources that their families would have no ability to provide, like the hippotherapy and private swim lessons—her family has used. A CADI waiver allows children, young people and adults with disabilities to live semi-independently in a group home or supported housing with live-in staff.

Like Beth, Kari acknowledges she won’t be able to care for her kids forever, nor can the families at her school.

“Kids get too big, or caregivers become too fragile. No one expects to be lifting their children for 25 years. It just isn’t sustainable,” says Kari. While she thinks Levi will be able to live independently eventually, he will still need support.

Cuts to Medicaid will have lifelong impacts for families

When asked what they would say to legislators who are considering cuts to Medicaid, both mothers had much to say, understandably.

“Solely from a financial view, you want these young people to become independent in the community. For the families, you want these parents to continue to be able to work,” says Kari. “From a growth and development perspective, you only have so much time to get children the support they need to change their trajectory. If you want them to become independent when they’re older, they need access to disability waivers and MA support, when they’re young.”

Beth agrees that legislators don’t seem to understand the impact of these cuts, long-term.

“The funding for Lauren’s care, if that were to go away, and we were to die, it would cost millions to care for her,” says Beth. “She would need to go to a group home, which wouldn’t be fully paid for, or give her the level of care she needs. So, she’d likely end up in the hospital, where she would die because they simply don’t have the capacity to care for her there, either.”

Kari adds, “The world has a right to know these children and experience their beauty and different types of intelligence. Without access to support, we could be missing out on the skills and abilities these children will develop, and on all the discoveries their unique brains will make in the future.”

Beth says, “I invite you into my home to meet Lauren and see what your decisions are doing. Please come spend an afternoon with Lauren and me. I want legislators to see what it really takes to care for members of the community with significant disabilities. Come see this beautiful life that is being impacted.”