The Indiana General Assembly’s Medicaid Oversight Committee met in the first of a series of meetings to discuss Indiana’s Medicaid Program on Tuesday, August 27. Medicaid Oversight Committee Slides
The Arc of Indiana was in attendance and shared a summary survey report developed by Indiana Families United for Care (IFU4C), a grassroots group of families aiming to support and educate families through the current Medicaid changes. Families United for Care Report
The Family and Social Services Administration presented to the committee on various Medicaid issues, including the new PathWays program, the waiting list for Medicaid Waivers, the shortfall exposed last December and newly created oversight of Medicaid expenditures.
Kim Dodson, The Arc of Indiana CEO, had this to say about the meeting, “I am pleased that several legislators asked questions to try to drill down more about what the data really means. People’s lives are being impacted so while attention needs to be paid to financials, there also needs to be concern about the human toll recent changes are having on Hoosiers.”
Jennifer Dewitt, spokesparent for IFU4C said, “Indiana Families United for Care continues to have grave concerns about the size of the waitlist, and the speed at which families will be rolled into waiver slots. For many of these families, it’s not just the in-home waiver services that are important. It is also being able to access Medicaid as a secondary payer for those items that traditional insurance does not typically cover such as feeding tube supplies, respiratory supplies, some medication, and other supplies and equipment.”
Dodson said, “Indiana now has over 20,000 people on Medicaid Waiver waiting lists. These are people who require the level of care provided in a skilled nursing facility or institution for people with developmental disabilities. While the state plans to bring people off waiting lists each month, waiting lists will continue to grow as new people will continue to apply for services each month. The Arc is extremely concerned that these individuals are not receiving critical services needed to live safely at home and in their communities, and families providing care are increasingly stressed and overwhelmed as they try to provide the care and support needed for their loved ones.”
Dewitt stated, “Our team collected real time data revealing how FSSA changes are impacting families—not just financially—but also mentally, emotionally, and physically. We surveyed 170 families—they are struggling. For many waiver families, the care they’re providing is above nursing facility level of care, but rather hospital setting level of care. Without their work caring for loved ones, their waiver recipient would be forced into a hospital which would result in an even more dire financial position for them and the state of Indiana.”
Dodson said, “We appreciate information shared by Indiana Families United for Care, including important feedback from families caring for medically complex children that found only 5.5% of respondents are fully staffed by outside caregivers:
- 17% Tried but only limited staff is available
- 23% Tried but no staff is available
- 31% Said scheduling and attending numerous medical and therapy appointments made receiving nursing difficult. Over 25% of families surveyed had 200+ appointments last year, and nearly 50% had over 100
- 5% Listed incidents of neglect or untrained staff as the leading reason for not receiving nursing
The shift to Structured Family Caregiving, (SFC) should be evaluated and options should be put in place that allow parents of minor children (Legally Responsible Adults) to provide attendant care. SFC was never intended or set up to assist children with complex medical needs. Staying the course will jeopardize children and force the consideration of more costly hospitalization and institutionalization.”