The Disability Law Center (DLC), joined by numerous organizations that serve individuals with intellectual and developmental disabilities (full list below), sent a letter to State leaders highlighting the severe staff shortage for home and community-based service (HCBS) providers and calling for action because they cannot set their own rates, thus requiring legislative intervention. Individuals in HCBS are facing reduced supports, being forced to move into larger, consolidated settings, or, worse, being discharged without a provider that can serve them. Now, with the end of a program that allowed family caregivers to be paid for providing services, the problem may only get worse.
“Thousands of individuals and families rely on the Home and Community Based Services Waiver to provide safety, access to the community, and to provide care for basic needs of individuals with disabilities across our State,” said LuWenn Jones, a parent of an individual in HCBS. “Thousands more can’t even access the most basic of those services because of the lack of available funding in past years. For far too many years we have only been funding the most critical of emergency or crisis situations, and now our providers are in crisis because of these staff shortages.”
“There is no doubt HCBS providers are doing everything they can to provide quality services,” said DLC Public Affairs Supervising Attorney, Nate Crippes, “but there is also no doubt that these staff shortages could have serious consequences. Without appropriate staff, there is a significant concern for the health and safety of individuals in services. And now that the caregiver compensation program is ending, it is hard to see how providers will be able to keep up with the needs of those in services, to say nothing of the thousands waiting for them.”
The State currently serves more than 6,000 individuals in HCBS on the Community Supports Waiver, a Medicaid program, and over 4,000 individuals are waiting for these services. These services are vital to ensuring Utahns with disabilities remain in their communities rather than more institutional settings, and many families in Utah rely on these services to keep their loved ones at home or nearby.
“If we do not address this situation immediately, every individual and family will find themselves affected in unimaginable ways,” added Jones. We need policy makers, decision makers and legislators to consider seriously: What if this were your child or your grandchild or your sibling? What if you were forced to decide about their long-term care? Who would you want taking care of them? How much would their care be worth to you?”
The Autism Council of Utah, Utah Parent Center, Legislative Coalition for People with Disabilities, Utah Developmental Disabilities Council, Independent Support Coordinator Association, Utah Statewide Independent Living Council, Utah State University Institute for Disability Research, Policy, & Practice, and the Utah Association of Community Services joined the DLC in urging State leaders to act.