FSHC Public Comment

My Personal Public Comment:

As a concerned parent of a 13-year-old with significant disabilities, a business owner providing home care services, and an advocate for families with medically complex children, I would like to address several pressing issues regarding the upcoming changes to the waiver assessment tool and service definitions. These changes have the potential to significantly impact families who rely on these critical services. It is important that the assessment tool be fully transparent, allowing families to understand its implications and ensuring that the tool accurately reflects the complex needs of children with significant medical issues. I strongly urge Indiana to shift toward a more collaborative approach in their decision-making process, where families and providers are involved in planning and determining the best methods to provide the care and support needed for these vulnerable populations. In this letter, I will outline my primary concerns, provide recommendations for improvement, and offer suggestions that will better meet the needs of families and individuals navigating complex medical care.

1. Concerns Regarding the New Assessment Tool and Its Lack of Transparency

I am deeply concerned that the new assessment tool, without full transparency, may unfairly disadvantage families with medically complex children. I strongly urge Indiana to adopt a similar approach and make the assessment tool fully transparent so families and providers can better understand its impact. Transparency will allow families to prepare and advocate for the support they need, helping ensure the tool accurately reflects the complex, ongoing care needs of their children.

• Disadvantage to Families with Medically Complex Children
  One of my major concerns is that the new assessment tool may unfairly disadvantage families with young children, particularly those caring for medically complex toddlers. These children may be assessed at Level 1 (the lowest tier) due to assumptions that caregivers already manage toileting and other activities of daily living (ADLs). This fails to account for the higher level of care required for children with significant medical needs.

• Challenges of the Early Years of Medical Issues
  The early years of managing medical issues for a loved one are often the most challenging. During this time, there are typically numerous doctor appointments, tests, and evaluations required to identify and diagnose the problem. The unpredictability of these early years can make it nearly impossible for caregivers to maintain steady employment, as they are constantly responding to emergent needs, new appointments, and unanticipated complications. Once a diagnosis is made and a treatment plan is established, some stability may return, but the first few years can be overwhelming as families navigate uncertainty, the sheer volume of healthcare visits, and the emotional strain of caring for a medically complex loved one.

• Impact of Lower Tier Assessments on Financial Support
  Additionally, reassessments leading to a lower tier would reduce already limited financial support, which could create a financial hardship for families who depend on this income to meet the unique needs of their children. Other states have eliminated lower-tier levels for minors, recognizing that children on nursing-level care waivers inherently require more care. I urge Indiana to consider adopting a similar approach.

2.  Eligibility Redeterminations and Transition Process from H&W Waiver to FSW

I am concerned about the transition process for individuals who will be moved from the H&W waiver to the FSW. The state plans to reassess eligibility for the H&W waiver, but the expedited process for returning to the FSW is unclear. This uncertainty may result in gaps in services and leave families vulnerable during transitions between waivers. Clear guidelines should be published within the eligibility guidelines of the waiver manual to prevent interruptions in care.

3. Reduction in Waiver Slots During Years 3, 4, and 5

Another concern is the planned reduction in waiver slots during years 3, 4, and 5. These waivers are often the primary means by which children with disabilities qualify for Medicaid. A reduction in slots could leave families without access to critical services, which could lead to financial crises and exacerbate the strain on families already navigating complex medical needs. Even with good private insurance, basic items such as formula for g-tube feedings are often not covered and can cost over $4,000 a month.

4. Concerns Regarding ATTC and HCA Service Definitions

• Ineffective Care Division Between ATTC and HCA Services
  Case managers are splitting care hours between Attendant Care (ATTC) and Home & Community Assistance (HCA) services, even when an individual’s is 100% dependent on a caregiver to help with every aspect of their day. For instance, if a person needs assistance with personal care during an HCA block—such as hygiene or transfers—the caregiver is not permitted to provide it, even if it is urgent. This limitation significantly reduces the effectiveness of the care plan and can leave families without support during critical moments. The current division of services is hurting care quality and does not reflect the actual needs of individuals with significant disabilities, who often require flexible, continuous support that cannot be rigidly divided into categories.

• Recommendation

To address this, the waiver manual should include the following phrase:

"Attendant Care (ATTC) services encompass both ADLs and iADLs, while Home & Community Assistance (HCA) services are designated for iADLs only. Individuals requiring significant hands-on support should receive both ADL and iADL supports under Attendant Care to ensure their needs can be met promptly and consistently.”

5. Allowing LRIs to Provide Attendant Care and HCA Services

To ensure that families receive the highest quality care, I strongly recommend that Legally Responsible Individuals (LRIs) be allowed to provide both Attendant Care and Home & Community Assistance services. LRIs are best quailed and equipped to meet the unique needs of individuals with complex medical issues. Additionally, the ongoing shortage of qualified workers in this field highlights the need for LRIs to be included in the service provider pool. Allowing LRIs to provide both types of care would ensure families receive the most qualified assistance and would help address the worker shortage.

In conclusion, I urge the Bureau of Disabilities Services, the Division of Aging, and the Office of Medicaid Policy and Planning to consider these concerns carefully. By addressing the outlined issues, we can ensure that waiver services truly reflect the complex, ongoing needs of families and individuals with disabilities, especially those caring for young children with medically complex conditions. The changes proposed must be sensitive to the realities of caregiving and the financial strains many families face. I appreciate your time and attention to these matters, and I hope my comments will be taken into consideration in the final version of the waiver.

Thank you for your commitment to improving the lives of individuals with disabilities and their families.

• Julie McGill, Family Solutions Home Care