Protecting Medicaid's promise for people with intellectual and developmental disabilities

Medicaid has long suffered from an image problem

Despite ample recent news coverage about possible deep federal cuts to the program — some misperceptions persist that it is simply a “government handout” program. In fact, according to health polling organization KFF, most Americans have some connection to Medicaid. Yet only 38% of the public knows that Medicaid pays for nursing homes and long-term care services, which deeply impacts people with disabilities.

In Illinois, one in three people with intellectual and developmental disabilities rely on Medicaid for their long-term care and support needs. These are our neighbors, our family members, our friends — and they deserve to have the support needed to live independently, have careers and thrive in their communities.

That support might be in the form of someone coming to their home to help them with activities of daily living, helping them find and retain a job and providing transportation to it or ensuring they can participate in community events and maintain meaningful relationships.

Unfortunately, proposals to cut Medicaid funding that are moving through Congress threaten to unravel the vital support system hundreds of thousands of Americans with intellectual and developmental disabilities rely on to remain in their homes and communities.

Medicaid isn’t just a line item in the federal budget — it’s a lifeline for our family, friends and neighbors. As lawmakers consider drastic cuts to Medicaid funding, they risk dismantling a system that allows people with disabilities — and the people who care for them — to live, work and thrive in their communities. Medicaid is funded by our state with matching funds from the federal government. Any cuts to federal funding for Medicaid will force our state to make impossible choices about crucial and lifesaving programs and services.

Significant cuts to federal Medicaid funding will place additional financial strain on state budgets, forcing states to absorb the increased costs. State budgets must prioritize mandatory Medicaid services, leaving optional services like community-based services vulnerable to reductions. Without access to community-based services, people with intellectual or developmental disabilities will either go without the support they need or end up in high-cost, state-run institutions — the very institutions we’ve worked for more than 50 years to move away from.

The idea of reducing Medicaid funding is even more devastating given that our state is already struggling to provide the home- and community-based services promised to people with these disabilities due to a lack of workers in the field. Wages for direct-support professionals, who assist with everything from personal care to job training, are directly tied to Medicaid reimbursement rates that have long been insufficient to attract and retain workers to this meaningful but challenging profession. According to recent research from ANCOR, 90% of community-based service providers experienced moderate or severe staffing challenges in the past year, forcing some to discontinue their programs and services. Many of these providers are the only ones in their area offering these services.

In Palatine, our organization, Little City, is one of these service providers. We serve nearly 1,000 children and adults with intellectual or developmental disabilities and have struggled with competitive recruiting and talent retention for years.

Community-based services fuel local economies, not only by creating direct support jobs, but also by helping people with these disabilities to stay employed, and allowing their family members or caregivers to stay in the workforce too.

Medicaid cuts won’t save money — they’ll shift costs to states, forcing states to cut services or increase the burden on taxpayers.

We call on Congress to protect people with disabilities and their families, our economy, and our communities by rejecting Medicaid cuts, whether those cuts are proposed through the reconciliation package or through some other federal action. Simply stated, we need to strengthen — not weaken — our commitment to those with intellectual or developmental disabilities. Doing so requires both federal and state investments in these services and in the direct support professionals who deliver them.

• Rich Bobby is Chief Executive Officer of Palatine-based nonprofit Little City Foundation. Rich lives in Lake in the Hills and has more than 25 years of experience in human services.