Families with disabled children are increasingly worried about the potential impacts of budget cuts to Medicaid, particularly following the recent measures proposed by President Donald Trump’s administration, which could affect crucial support services.
The experience of the Nemhauser family from Bellevue illustrates the critical role that Medicaid plays in the life of children with disabilities. Their son Nate, a 21-year-old who has autism and an intellectual disability, relies on Medicaid’s waiver program for nearly every aspect of his daily routine.
Nate struggles with communication and concentration, making the assistance of his job coach, Megan Cymanski, essential. She helps him navigate his work shifts at Pagliacci Pizza, where he is responsible for tasks such as folding pizza boxes and stocking coolers.
Since starting his job in November, Nate’s work schedule has increased from one two-hour shift a week to now three shifts.
Rachel Nemhauser, Nate’s mother, emphasizes how Medicaid waivers have enabled their family to provide a fulfilling life for Nate.
“He has this rich, busy life,” she said, crediting the waivers with transforming that vision into reality.
While many associate Medicaid primarily with health care for low-income families, the program encompasses numerous non-medical services. Established in the early 1990s, these services allow people with disabilities and the elderly to live independently within their communities rather than in institutional settings.
Washington State, for example, offers several Home and Community Based Services Medicaid Waivers. Rachel Nemhauser applied for a waiver when Nate was just a toddler, facing challenges in providing the specialized care he required, which included speech and behavior therapies.
“After a nine-year wait, Nate was granted a waiver at age 12,” Rachel recalled, illustrating the ongoing struggle families face in accessing essential services. With the waiver, Nate receives approximately $6,000 annually, funds that are directed towards various supports necessary for his daily living.
The allocation of these funds is up to the family, allowing them to tailor the support based on Nate’s needs, whether that’s for employment or recreational activities. Rachel noted, “If he’s spending more time getting employment support, he doesn’t need as much recreational activities. But there’s never enough.”
Currently, nearly 2 million residents in Washington are enrolled in Medicaid. While the state’s Health Care Authority is still evaluating the ramifications of recent federal budget adjustments, it is anticipated that up to 320,000 people might lose their coverage due to the proposed cuts.
Further complicating the situation, the health policy research group KFF has estimated that Washington could lose as much as $36 billion in Medicaid funding.
Proponents of the cuts argue that the current Medicaid expenditure model is unsustainable, citing concerns over lax eligibility requirements that may lead to fraud and abuse. However, Rachel Nemhauser vehemently disputes that viewpoint, stating, “I am not seeing the system being misused. I’m seeing people desperate for help and accessing these as lifesaving measures.”
With Nate now approaching his final year of school, the Nemhauser family is faced with uncertainty about future supports.
Rachel explained, “It’s hard to make plans when it’s not clear yet what steps the state will take — and whether it will allow Nate enough support to live the life he wants.”
Nate dreams of having a job, a home, a girlfriend, and perhaps a cat. As Rachel summarized his aspirations, “He’s not asking for a lot.”
After clocking out from his work shift at Pagliacci Pizza, Nate enjoyed a slice of cheese pizza and a Coke — a small reward for his hard work.
The ultimate hope for Rachel and her family is that one day Nate will not need a job coach, progressing toward achieving his independence and fulfilling his dreams.
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