Mimi Burke from Crown Point passionately voices concerns over the potential devastation and cruelty that Indiana’s Medicaid shortfall might inflict on the state’s most vulnerable residents, particularly families with medically complex children like hers.

The Impact of Attendant Care Program on Families

Mimi Burke, whose 21-year-old daughter Sophia has Rett syndrome, highlights the life-changing impact of the attendant care program on her family since August. This program has alleviated the financial strain associated with caring for a medically complex child, offering crucial support.

Alarming Budget Shortfall and Proposed Changes

In December, Indiana’s state budget forecast revealed a staggering $1 billion Medicaid budget shortfall for the current two-year funding cycle (2024-2025). To address this, the Indiana Family and Social Services Agency proposed eliminating the attendant care program, sparking controversy and concern among advocates.

Legislative Developments: HB 1386

Despite efforts to address concerns through HB 1386, a “Medicaid Matters” bill, the Republican supermajority in the House failed to advance the bill for a second reading. This has left families like the Burkes in limbo, unsure of the fate of crucial support services.

Lt. Gov. Suzanne Crouch’s Call for Alternatives

Lt. Gov. Suzanne Crouch urged the FSSA to explore alternative solutions to balance the budget, emphasizing the importance of preserving attendant care services for families like the Burkes.

Timeline of Program Implementation and Funding

While the attendant care program was federally approved in 2017, Indiana did not opt into the program until 2022 during the pandemic, citing the statewide nursing shortage as a motivating factor. Mimi Burke disputes the claim that the program’s funding shortfall is solely due to pandemic-related needs, emphasizing that the program predates the pandemic.

Financial Impact on Families: The Role of Caregivers

Under the current program, parents like Mimi Burke can be paid caregivers but not for medical-level care. Proposed changes suggest excluding parents and legal guardians from payment, leading to potential financial hardships for families caring for medically complex children.

Challenges Faced by Medically Complex Families

Mimi Burke sheds light on the challenges faced by medically complex families, including the difficulty in finding qualified home health nurses due to lower pay in home settings. The struggle to balance work and caregiving responsibilities is a common theme among families in similar situations.

Advocacy and Outcomes: Everybody Counts Perspective

Teresa Torres, representing Everybody Counts, emphasizes the negative outcomes of cutting funding for programs benefiting people with disabilities. Loss of such programs may force families to choose between tearing apart or shouldering the financial burden of long-term care facilities.

Susan Naden’s Personal Struggle

Susan Naden shares her unique situation, where a change in rules affects her family’s adoption plans for her medically complex child. The impact extends beyond financial consequences, affecting the family’s structure and identity.

Potential Ramifications and Community Response

As news of the proposed cuts spreads, Leslie Hawker and Jordan Musenbrock from Everybody Counts anticipate growing concern among clients. Families rely on the financial assistance provided by these programs, and the potential fallout may lead to increased calls for help.

A Stark Reality for Indiana’s Vulnerable Families

The proposed changes to Indiana’s Medicaid funding and attendant care program raise critical concerns for vulnerable families, putting essential support at risk. The potential consequences extend beyond financial strain, impacting the very fabric of these families and highlighting the need for careful consideration in budget decisions.