How Medicaid cuts threaten disabled Minnesotans

President Donald Trump signed the federal budget into law on July 4. This law shapes funding targets over the next 10 years for programs such as Medicaid. It is now up to the state of Minnesota to determine how these federal budget changes will impact our future state budget.

In Minnesota, the Medicaid program is called Medical Assistance (MA), and disability waivers are a part of Minnesota's MA program. As stated by the Minnesota Department of Human Services, "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 to have more flexibility with the services they can access. It provides them with options, which wasn't often the case in the past.

According to national statistics from The Arc, "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."

Reduced Medicaid coverage would deeply impact Minnesotans, like Beth, Sean, and their daughter, Lauren.

Beth, Sean, and Lauren

Lauren is a 27-year-old who has Rett syndrome, "a rare neurological disorder caused by genetic mutations that disrupt brain development, primarily affecting girls." Infants with Rett syndrome may develop normally at first, then regress or begin missing developmental milestones. In Lauren's case, her inability to crawl and walk, along with lack of communication, led to a diagnosis at the age of 2.

Today, Lauren is nonverbal and uses a wheelchair. She communicates through an electronic communication device, a yes/no card and her excellent nonverbal communication skills. Yet, Lauren lives independently — made possible entirely by the 24-hour in-home care covered through her disability waiver.

While Lauren lives in her own apartment, she is fully dependent on her caregiver for everyday living — including tasks like feeding, cooking, toileting, bathing, maintaining her apartment, taking her medicine, and other medical needs. Among these tasks are support with community outings and social interactions.

Like many American families, Lauren's parents, Beth and Sean, can't afford to pay the estimated $500,000 per year for her in-home care. A disability waiver covers many of the essential services and supports that are vital to Lauren's quality of life — including her 24/7 in-home care, her Fraser case manager, the conversion of a van for wheelchair accessibility, and a portion of her housing costs — while her parents pay the remainder.

For families like Lauren's — where aging parents and full-time jobs restrict the ability to provide care — disability waivers aren't a luxury; they're a necessity.

Why is the ability to afford disability care now at risk?

Many people with disabilities rely on Medicaid for essential care. The Minnesota Department of Human Services webpage cites that "1 in 4 Minnesotans is enrolled in Medicaid. Medicaid is the single largest source of health insurance in Minnesota."

The specific impacts of the federal cuts on Minnesota are yet to be determined.

An estimated 6 million people rely on Medicaid for long-term care, and the cost of their care is significantly higher than that of other enrollees. Specifically, for those in institutional care, costs can be nearly $50,000 a year, while Medicaid spending for people not using long-term care is usually under $5,000.

In Fraser's 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 essential care.

Medicare cuts will have lifelong impacts

For individuals like Lauren, changes to care coverage would be devastating. Lauren's family needs a long-term solution — like the care she currently receives through her disability waiver. But changes to her coverage could have life-altering consequences for her. If families can't afford care, and there's no one left to provide it, what happens next? America calls itself the land of opportunity, but for too many, that promise is slipping away. It's time to face the crisis — and act now. Contact your state representative and ask them to protect Minnesotans' access to Medicaid payments.

Rick Ferris is the board chair at Fraser, a Minneapolis-based nonprofit.