Last year, families of medically complex children found themselves at the center of the Family and Social Services Administration’s response to the 2023 Medicaid forecasting error. A House committee approved legislation that could provide more transparency as the agency makes changes to an important Medicaid waiver.
The bill's author, Rep. Ed Clere (R-New Albany) said FSSA is expected to request changes to the Health and Wellness waiver later this year.
House Bill 1689 would set out some requirements for how the agency completes that process this time.
Under the legislation, the agency would be required to present a report to the FSSA Division of Disability and Rehabilitative Services Advisory Council. Those meetings are open to the public, and the council has several advocacy positions.
Within that report, FSSA would be required to highlight any information related to the Structured Family Caregiving program or possible reimbursement for family caregivers providing attendant care — which were both affected by FSSA’s response to the forecasting error.
However, the legislation does not require any changes.
HB 1689 did originally require the FSSA to apply for a waiver to establish a fourth Structured Family Caregiving tier and allow legally responsible individuals to provide attendant care. But, the committee removed it from the bill.
Clere said he recognizes that this is a new administration, and wants to work with them.
“We want to work in good faith with the administration,” Clere said. “We've heard from the [Division of Disability and Rehabilitative Services] leadership that they're already moving in this direction potentially, and we want to continue those conversations and give everyone an opportunity to work together.”
The agency has the opportunity to do those things, even if this legislation does not require them to do so.
Jennifer Dewitt, with Indiana Families United for Care, said she supports the bill, even with the amended language. She said she is often the only one able to provide the care her son needs — which has cost her three jobs.
“I am the absolute best person to care for him, but I — like many families — feel forgotten,” Dewitt said. “We feel like most people in government have no comprehension of the sheer amount of work managing a very medically complex child is.”
Dewitt said it is important that families of medically complex children have a seat at the table as these issues are being discussed by the state.
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The amended bill would also require Indiana to include how it plans to define “extraordinary care” in its report to the advisory council — including the state’s method for determining whether someone requires extraordinary care.
Tom Crishon, chief legal counsel for the Arc of Indiana, said the proposed changes would offer high quality services while fostering greater transparency and accountability.
“This structured, collaborative approach allows stakeholders to provide meaningful input, ensuring the services meet the needs of individuals and families while guiding FSSA in making informed decisions on waiver amendments affecting this population,” Crishon said.
HB 1689 also does a number of other things to home- and community-based services, including requiring FSSA to collect data for lawmakers to “identify gaps, improve service delivery and address underutilization of critical supports.”
Crishon said the assessment of underutilized services and barriers to access will play a key role in shaping future policy recommendations.
“The report's inclusion of key metrics such as service utilization by age group, county residents and type of service will help inform policymakers and advocates on where improvements are needed,” Crishon said.
The bill now heads to the full House for consideration.
Abigail is our health reporter. Contact them at aruhman@wboi.org.