14-05-2025
Idaho's Medicaid cuts threaten our families — and our humanity
I've spent years volunteering with the Treasure Valley Down Syndrome Association, where I've walked alongside many new parents as they try to make sense of this complex system. I have always been proud that Idaho is a state that invests in the unique and individualized needs of children with disabilities, writes guest columnist Julie McConnel. (Photo courtesy of Julie McConnel)
I was 43 when I received the simultaneously wonderful and intimidating news that I would be the mother of twins. Later, when it was confirmed that both boys would be born with Down syndrome, fear took the front seat. I had no idea how I would provide care for two children with disabilities. I had so many questions.
To my relief, I soon discovered that Idaho had several programs in place to support our family. First, there was the Katie Beckett waiver which gave our sons access to Medicaid coverage and spared us from what would have been crushing NICU bills.
Over the years, Medicaid has been the backbone of their health care — funding multiple surgeries, specialist appointments, and ongoing speech, occupational, and physical therapies. We've also benefited from waivers that help with alternative therapies, community support, personal care services, respite care and other services that have allowed our boys to be active participants in our community.
Children's health services could see trims even under scaled-back Medicaid cuts
These supports haven't just met our needs — they've helped shape our sons' lives. They've made it possible for them to grow up healthy, engaged, and included.
I've spent years volunteering with the Treasure Valley Down Syndrome Association, where I've walked alongside many new parents as they try to make sense of this complex system. I have always been proud that Idaho is a state that invests in the unique and individualized needs of children with disabilities.
That's why what's happening now in Congress is so concerning.
Today, I'm scared — not for a diagnosis or a milestone, but because the services that have kept my children thriving for the past nine years are at risk. Medicaid and its optional programs — including the Katie Beckett waiver — are vulnerable to cuts, and proposed changes at the federal level threaten the very foundation of support many families depend on.
It's important to understand how this system works. Medicaid currently allows states to partner with the federal government, funding essential services for individuals with disabilities. In Idaho, the federal government provides 70 cents of every dollar the state spends on Medicaid services to individuals with disabilities. This partnership helps provide life-changing support, but proposed cuts threaten this vital funding. If that funding is slashed or capped, families may be forced to go without the services their children need.
Medicaid isn't just about health care — it also supports children with disabilities in public schools. My sons' paraprofessionals, aides, special education teachers, adaptive equipment and educational aids are all made possible through Medicaid funding. If these resources disappear, schools will be left scrambling to meet the needs of some of their most vulnerable students — and many of Idaho's schools, especially our rural schools won't be able to.
And the need for services is only growing. The average life expectancy for people with Down syndrome has risen dramatically over the past few decades, now reaching into their 60s. With longer lives comes a greater need for long-term support — support that allows individuals to live in the community, hold jobs, maintain relationships, and enjoy lives of dignity, meaning and personal contributions.
My husband and I recently visited the site of the former Willowbrook State School in New York — a haunting reminder of what can happen when families don't have the support they need. Willowbrook was an institution where people with developmental disabilities were warehoused, neglected, and abused. The facility closed in 1987, and today, the site is home to a college that promotes inclusion for individuals with disabilities and trains professionals in disability services. It's a powerful symbol of change — and a warning.
We cannot forget the lessons of the past. When families are left without options, systems break down. Crisis care becomes the default. People are pushed to the margins. And the most vulnerable pay the highest price.
Our country has an opportunity to stay the course — to keep investing in programs that work, that save lives, and that allow families to stay together. But that will only happen if our leaders choose to protect and prioritize Medicaid.
To our elected officials in Washington: I urge you — do not turn your backs on families like mine. Preserve Medicaid and the absolutely vital services it provides. Maintain the many programs that give individuals with disabilities the chance to live full and meaningful lives.
Our country has an opportunity to stay the course — to keep investing in programs that work, that save lives, and that allow families to stay together. The decisions made in Washington will determine whether individuals with disabilities continue to receive the care they need and deserve. Medicaid has long been a cornerstone or that support. It is critical that our representatives understand just how much is at stake — for families, for communities, and for the future we are building together.
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