Out-of-State Children's Hospital Outlier Cost Reimbursement Methodology

Announced: July 30, 2025 - Proposed Effective Date: July 1, 2025

Comment Deadline: August 29, 2025 

Subject: COMMENT RE: OUT-OF-STATE CHILDREN'S HOSPITAL. 

To: FSSA, Office of Medicaid Policy and Planning, Attention: Brooke Cripe

I am writing to express my strong support for the extension of the out-of-state children’s hospital reimbursement methodology. This policy provides essential support for Indiana families, like mine, whose children require specialized medical care that is not always available within the state.

This issue is very personal for my family. My son has complex neurological and gastrointestinal conditions, and our search for care led to a near-fatal experience at Riley Children’s Hospital during an EEG. This terrifying event forced us to find an alternative, which made us realize just how extremely limited the options for his level of specialized care are in Indiana. Thankfully, we found Cincinnati Children’s Hospital. Access to their facility has been fundamental to his well-being, providing the expert treatment he requires and giving our family peace of mind. Our story is a clear example of why these out-of-state centers are a necessity.

To further improve access to specialized care, I also encourage you to consider expanding the network of approved facilities. For instance, Cleveland Clinic is a leading institution for specialized pediatric care. While I am not aware of the specific reasons it is not currently an Indiana Medicaid-approved facility, I ask that your office explore what might be possible to add it and other similar institutions to the network. Providing families with multiple viable out-of-state options would enhance access to critical care for children with complex medical needs.

Thank you for considering my perspective and for your ongoing efforts to ensure that children with complex medical needs in Indiana have access to the specialized care they require.

Best Regards,

Julie McGill

2025 Waiver Amendments

Announced: July 2025 - Proposed Effective Date: Dec 31, 2025

Comment Deadline: August 8, 2025 

I’ve shared my detailed public comments on the proposed changes to Indiana’s Medicaid waivers, including PathWays, Health & Wellness, Family Supports, TBI, and CIH. These changes will directly affect families, caregivers, and providers across the state. You can read my full comments through the links below to see how these proposals impact care, access, and the ability for people with disabilities to remain safely at home.

Vocational Rehabilitation (Adds 460 IAC 14.1)

Rule Docket Schedule

Comment Deadline: August 4, 2025 

Subject: COMMENT RE: LSA Document #24-82

Dear Policy Team,

As a parent of a child with a disability, a home care provider, and an advocate for families navigating Indiana’s disability support systems, I’ve seen firsthand how clarity, strong protections, and fair processes in the VR system can make all the difference.

As someone deeply invested in the success and protection of Indiana’s Vocational Rehabilitation (VR) participants, I’m writing to share my feedback on the newly adopted rules under 460 IAC 14.1. While I appreciate the thoughtful changes made in response to public comments and recognize several important improvements, I remain concerned that some key protections, definitions, and procedures have been removed or left out. These changes could unintentionally harm individuals and families.

✅ Positive Changes Worth Noting

• Hearing aid flexibility: Medical clearance can now come from a primary care physician when appropriate, reducing delays and cost barriers.

• Transportation clarified: Rules now clearly support round-trip travel to assessments and training, and eliminate confusing limitations.

• Student aid is optional: Participants are no longer required to apply for loans, merit scholarships, or work-study in order to receive VR support.

• Family involvement language removed: Potentially discouraging language about involving family has been eliminated.

• Improved case closure language: Rules now reflect patterns of non-cooperation rather than isolated incidents.

❌ Ongoing Concerns

Despite these improvements, I urge DDRS to revisit the following omissions and structural gaps in the new rules:

1. Loss of Detailed Participant Rights and Procedural Protections
   The prior rules explicitly guaranteed rights such as informed choice, statewide service access, and family involvement. Article 14.1 reduces these protections to minimal language referencing federal law. Without a clear “Participant Rights” section, transparency, trust, and consistent practice are weakened.

2. No Required Notification of the Client Assistance Program (CAP)
   While CAP is now defined, the rules no longer require that individuals be notified of CAP availability at key decision points. This is a serious oversight that could leave families unaware of critical advocacy resources—especially during appeals or disputes.

3. Loss of Mediation and Formal Dispute Resolution Framework
   Article 14 included clear procedures for informal review, mediation, and timelines for due process hearings. Article 14.1 eliminates mediation entirely and provides only limited definitions of “administrative review” and “appeal request.” This weakens participants’ ability to resolve concerns efficiently and fairly.

4. Loss of Service-Specific Guidance
   Several entire sections from the previous rules—including those governing supported employment, assistive technology, physical restoration, and small business supports—have been removed or reduced to definitions. There is no operational guidance to ensure consistent interpretation and application of these services.

5. No Guidance on Order of Selection or Waiting Lists
   The previous rules detailed how participants would be prioritized for services during resource limitations. In Article 14.1, the “order of selection” is defined but left without any explanation of categories, decision processes, or participant communication during waitlist periods.

6. Reduced Definitions for Support Services
   Terms such as “services to family members,” “ongoing support,” and “personal assistance” have been removed or narrowed. This may result in misunderstanding, inconsistency, or denial of services that were previously well-understood.

7. Exclusion Lists without Clear Rationale
   Some services are now only mentioned in exclusion sections (e.g., 460 IAC 14.1-7-2) without explanation or cross-reference. This may lead to confusion about what is permitted, especially when services previously allowed are now absent or unclear.

💡 Ideas & Opportunities for Further Improvement

To make Indiana’s VR program a national model of equity, access, and transparency, I encourage DDRS to consider these forward-looking improvements:

• Add a formal “Participant Rights and Responsibilities” section to make protections visible and enforceable.

• Require all communications to be in plain language, written at a 6th to 8th grade reading level, and made available in accessible formats including Easy Read, American Sign Language (ASL), large print, and Spanish. Clear communication is essential for ensuring individuals with diverse cognitive, linguistic, and literacy needs can fully understand their rights, services, and decisions.

• Set timelines for eligibility, plan approval, exceptions, and dispute resolution to ensure timely and predictable services.

• Provide a status tracking system (online or by phone) so participants can follow appeals, service requests, and exceptions in real time.

• Mandate an annual plan review to allow participants to revisit goals or adjust supports as needs change.

• Offer peer navigation or lived-experience support to help participants understand their rights, choices, and options.

• Include optional family training and support services, especially for youth and individuals with significant disabilities.

• Train VR staff in trauma-informed and culturally responsive practices, and integrate these principles into service planning.

• Establish a VR Advisory Panel including participants and families to monitor implementation, identify barriers, and advise on future updates.

VR Suggestions

I respectfully request that DDRS amend or supplement 460 IAC 14.1 to:

• Reinstate notification requirements for CAP at all major decision points.

• Restore a defined mediation process and reintroduce a structured dispute resolution framework.

• Publish operational guidance or a supplemental manual to clarify service-specific expectations.

• Clearly define the Order of Selection process, including prioritization categories and communication strategies.

• Address service exclusions and undefined terms to ensure clarity, consistency, and equitable access across the state.

• Consider the "Ideas & Opportunities for Further Improvement" outlined above to strengthen Indiana’s VR system for the long term.

Thank you for your work and your ongoing commitment to building a strong, equitable Vocational Rehabilitation program in Indiana. I appreciate the chance to provide input and would be happy to engage further to support future improvements.

Sincerely,
Julie McGill

“Extraordinary Care”  Definition Comments

6/15/2025

Public Comment – Opposition to Proposed Definition of “Extraordinary Care” for ATTC and PAC Services. 

To Whom It May Concern,

I am writing to express concerns regarding the proposed definition of “extraordinary care” for legally responsible individuals (LRIs) providing Attendant Care (ATTC) and Participant Assistance and Care (PAC) services as published (https://www.in.gov/fssa/ddrs/files/ExtraordinaryCareDefinition.pdf). While I support the inclusion of family caregivers in Indiana’s waiver programs, the current draft of this definition is inappropriate for the scope and structure of these non-medical services.

As both a provider and a parent, I have firsthand experience with the realities of caregiving. My 13-year-old son is profoundly disabled and requires full physical assistance, constant supervision, and hands-on care throughout the day. Although his needs are intensive and ongoing, they do not meet the narrow definition of “nursing-level” services outlined in the proposal.  A definition that overlooks profoundly disabled individuals like my son risks excluding the very families these programs were created to serve.

⚠️ Key Issues with the Proposed Definition:

1. Medical Complexity Should Not Be Used to Qualify for Non-Medical Services

ATTC and PAC are explicitly non-medical in scope. Tying eligibility to nursing-level care needs (e.g., ventilator support, tracheostomy, TPN) misaligns with the purpose and legal framework of these services.

• These examples represent skilled care, typically delivered by licensed professionals, and fall under medical or home health models—not HCBS waivers offering non-medical supports.

• Caregivers supporting individuals with high behavioral, cognitive, or functional needs may be excluded simply because their loved one doesn’t have a nursing-level condition—even if their care needs are constant and complex.

2. The Definition Misrepresents How Participants Qualify for Services

ATTC and PAC eligibility is based on functional limitations, not medical diagnoses. These programs exist to support individuals who:

• • Cannot safely complete ADLs such as bathing, toileting, or transferring;

  • Require behavioral redirection, safety supervision, or constant cueing to navigate daily life;

  • Depend on caregiver support due to intellectual or developmental disabilities—not medical instability.

3. The Phrase “or other comparable nursing services approved by FSSA” Is Overly Broad and Subjective

• This catch-all clause would give the Family and Social Services Administration (FSSA) the discretion to continuously redefine or expand eligibility based on internal judgment—not statutory or waiver-based criteria.

• It opens the door for ongoing creep of medical complexity into a non-medical program, creating confusion, inconsistent application, and potential inequity in who qualifies.

• It also implies that a caregiver must meet a threshold of performing near-clinical care to qualify for services, which is in direct conflict with the intent of non-medical HCBS waiver supports.

Suggested Definition 

“Extraordinary care” refers to essential, non-medical assistance provided by a legally responsible individual—such as a parent of a minor child or a spouse—that exceeds the typical caregiving responsibilities expected for someone of the same age without a disability and who would not normally require daily support.

This care must result from a documented disability or condition that causes significant and sustained functional limitations—requiring the legally responsible individual to provide near-daily, hands-on support or constant supervision to ensure health, safety, or participation in daily activities.

Examples of extraordinary care may include:

• Ongoing, hands-on assistance with ADLs (e.g., bathing, mobility, dressing, toileting) that the individual is unable to perform independently due to their condition;

• Continuous supervision, behavioral redirection, or cueing necessary to prevent harm or ensure daily functioning, due to cognitive, developmental, or behavioral impairments;

• Essential support with IADLs (for individuals over age 18) when the person cannot independently manage critical tasks such as medical appointments, transportation, or health-related errands due to disability—not due to age or typical life stage.

A medical diagnosis or chronic condition alone does not establish eligibility. Likewise, care that is typical for a young child or elderly spouse—such as intermittent oversight, general nurturing, or age-related dependency—does not constitute extraordinary care.

The need must be clearly documented in the person-centered service plan and reviewed periodically to ensure it continues to meet the threshold for extraordinary, non-medical care.

Thank you for the opportunity to submit this comment. I urge the agency to reconsider the proposed language and ensure the definition upholds the non-medical intent of these services while recognizing the full spectrum of disability-related caregiving needs.

Best Regards,

Julie McGill

ABA Proposed Coverage Limits Comments

Subject: COMMENT RE: ABA THERAPY COVERAGE

 2/8/2025

FSSA, Office of Medicaid Policy and Planning,
Attention: Madison May Gruthusen
  402 West Washington Street Room W382,
P.O. Box 7083,
Indianapolis, IN 46207-7083

Dear OMPP,

I am writing to strongly oppose the proposed State Plan Amendment (SPA) that would limit ABA therapy to 30 hours per week for a maximum of three years, followed by only minimal services if deemed “medically necessary.” These arbitrary limits will severely harm children who rely on ABA for essential life skills and contradict the purpose of Medicaid’s EPSDT (Early and Periodic Screening, Diagnostic, and Treatment) protections, which require states to cover all medically necessary services for children under 21.

My Personal Experience & Key Concerns with the Proposed SPA

ABA Needs Are Individual – Time Limits Will Harm My Child

As a parent of a child who relies on ABA therapy, I know firsthand that progress is not linear and certainly not limited to a three-year timeline. My child has made significant gains, but these did not happen overnight. Restricting access based on an arbitrary timeframe rather than individual progress sets children up for failure.

Even with intensive therapy, there are still daily challenges that require ongoing support. ABA has been crucial in helping with communication, self-care, and safety awareness—things that would not have been possible without sustained access to the right level of therapy. Limiting these services will force many children to regress and lose hard-earned progress.

EPSDT Requires Medically Necessary Services Without Arbitrary Limits

Federal law requires Medicaid to cover all necessary treatments for children under 21, yet this proposal ignores those protections.

Diagnosis Requirement Unfairly Excludes Other Disabilities

Currently, ABA is only covered for children with an autism diagnosis, yet many other developmental disabilities (such as Down syndrome, global developmental delay, and intellectual disabilities) would benefit from these services. My child’s needs go beyond the autism diagnosis, and ABA has provided essential support in daily living skills and behavior regulation. Expanding access would allow more children with significant needs to receive the interventions they require.

Key Concerns with the Proposed SPA:

1. ABA Needs Are Individual – Time Limits Are Harmful

• • The three-year cap assumes all children progress at the same rate, which is false. Many children need longer to develop essential skills like communication, self-care, and emotional regulation.

  • Restricting access based on arbitrary limits rather than individual progress sets children up for failure and regression.

2. EPSDT Requires Medically Necessary Services Without Arbitrary Limits

• • EPSDT exists to prevent long-term disability by providing early and continuous intervention. Denying necessary services through arbitrary time limits will result in increased long-term care costs as children miss out on critical early interventions.

  • This SPA violates EPSDT protections by restricting access based on time rather than medical necessity. Medicaid is federally required to provide all medically necessary services for children under 21, regardless of state-imposed limits.

3. The Proposal Ignores the Reality of ABA Therapy

• • Many children need more than 30 hours per week to make meaningful progress, particularly those with severe communication, self-care, or behavioral challenges.

  • The proposed “behavior-specific, focused ABA” after three years is vague and restrictive, likely making it extremely difficult for children to qualify for continued services.

Additional Concerns That Need to Be Addressed:

Unfair & Flawed Assessment Requirements (BASC-3 & Vineland-3)

I recently completed these assessments, and I was shocked at how inappropriate they are for children like mine. The questions are clearly designed for verbal, school-aged children—not for nonverbal individuals or those with severe disabilities.

• • The Vineland-3 relies entirely on parent responses, meaning the results can fluctuate based on the parent’s mindset that day. If a parent is exhausted, stressed, or not seeing all the progress that therapists report, it could wrongly suggest a lack of progress—giving Medicaid an excuse to deny services.

  • The BASC-3 focuses on parenting style rather than the child’s actual needs. There is a clear risk that Medicaid will misuse this data to claim that a child’s challenges stem from parenting rather than medical necessity—potentially leading to denials.

Pearson’s Monopoly on Assessments is Unfair & Not Preferred by BCBAs

Another major concern is that Indiana is requiring assessments exclusively from Pearson, despite them not being the most effective or preferred tools recommended by Board Certified Behavior Analysts (BCBAs).

• • Pearson’s assessments are subjective, survey-based, and not designed for individuals with complex disabilities.

  • Other companies, such as WPS (which produces the ADOS-2 and CARS-2, widely respected in the field), offer more objective and effective assessment tools.

  • Forcing providers to use Pearson’s tools—which are expensive and require unnecessary software purchases—creates a financial barrier while benefiting Pearson, not children in need.

Conclusion: Reject This Harmful SPA

The proposed SPA is not about improving care—it’s about cost-cutting at the expense of vulnerable children. Limiting ABA to 30 hours per week for three years is an unnecessary, harmful restriction that will force many children to lose progress and increase long-term care costs. EPSDT protections require Medicaid to cover all medically necessary services for children under 21, not just those the state deems convenient. Limiting ABA therapy based on time rather than need contradicts Medicaid’s legal requirement to provide medically necessary services under EPSDT.

Instead of restricting access, Indiana should be:

✅ Reducing wait times.

✅ Expanding access to qualified providers.

✅ Expanding ABA eligibility to include other developmental disabilities.

✅ Using more appropriate, BCBA-recommended assessments, not just Pearson’s flawed tools.

✅ Ensuring individualized treatment plans based on a child’s actual needs—not arbitrary limits.

My child and many others depend on ABA therapy for essential life skills. I urge you to reject this harmful SPA and prioritize policies that truly support children with disabilities.

Sincerely,

Julie McGill

2025 Waiver Amendments - Round 1

Announced: Jan 2025 - Proposed Effective Date: July 1, 2025

Date: 1/15/2025

Subject: Public Comment on Waiver Amendments – Feedback and Suggestions

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.

 Concerns: 

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