Over the past year, the Family and Social Services Administration (FSSA) has enacted a series of policy changes that have created devastating challenges for families caring for loved ones with profound disabilities. These are individuals who often are 100% dependent on caregivers for every aspect of their daily lives, including eating, mobility, and personal hygiene. Many are unable to move, feed themselves, or perform any basic life functions without constant, hands-on assistance. 

Despite the fact these families need and qualify for medically necessary services, FSSA has created burdensome red tape that undermines their ability to access to care. 

One devastating change was FSSA’s abrupt announcement disallowing certain individuals from working as attendant caregivers. This forced families to transition to other programs or scramble to find new caregivers—an impossible task given the extraordinary complexity of their loved ones’ needs. Yet even if they navigate these hurdles, care is often denied—not because they fail to qualify, but because FSSA arbitrarily shifts responsibility between programs. Families are told their care should be managed under one program, only to have it denied and redirected to another, leaving them caught in a never-ending cycle of uncertainty.  

This bureaucratic ping-pong game is not accidental; it is a deliberate cost-cutting strategy in response to Medicaid’s $900 million shortfall, leaving families trapped in an exhausting cycle of denials, appeals, and uncertainty. Families are left feeling abandoned by the system, as the very supports meant to ensure their loved ones' well-being are eroded or denied altogether. 

The cost-cutting measures extend far beyond home care. Families are suddenly facing denials not only for caregiving services but also for necessary medical equipment, at pharmacies, ABA therapy, and for other critical supports. Each denial triggers another battle, forcing families to expend time, energy, and resources they simply don’t have to fight for the care their loved ones need to survive.

FSSA's requirement for detailed, minute-by-minute schedules of care demonstrates a complete lack of understanding of what it means to care for someone who is entirely dependent. Caregiving for individuals with such profound needs is unpredictable and relentless, often requiring quick adjustments to prevent harm or meet emergent needs. Reducing this work to rigid schedules devalues the sacrifices and commitment of caregivers who dedicate their lives to providing constant, loving support.

The relentless bureaucracy is destabilizing families who are already stretched to the breaking point. By prioritizing cost-cutting over care, FSSA is eroding the quality of life for Indiana’s most vulnerable individuals and their caregivers. The uncertainty created by these policies is leaving families unable to plan for the future or provide consistent care, compounding the stress and exhaustion they already face.

Indiana is moving backward in how it supports individuals with severe medical needs and their families. FSSA’s rushed policy changes show little regard for their harmful consequences, leaving families abandoned by the very system meant to protect them.

Policymakers must act now to stabilize this broken system through genuine collaboration with families, caregivers, and service providers. Their voices are critical to creating policies that ensure stability, preserve dignity, and protect access to essential care.

Balancing a budget cannot come at the expense of Indiana’s most vulnerable. The state must prioritize transparency and family-centered policies that support those who need it most.