🚨 Speak Up Now: Make Your Voice Heard — Public Feedback Is Needed 🚨
Health & Wellness / TBI / Pathways Waivers
Contains Multiple Sections
Main Section - (excludes Attendant Care & SFC)
Comments on this draft H&W & TBI amendment will be accepted until 4:30 PM Eastern Time August 8, 2025, via email to DDRSwaivernoticecomment@fssa.IN.gov or via mail to the address below. H&W Waiver Amendment Public Comment c/o Division of Disability and Rehabilitative Services 402 W. Washington St., #W453 P.O. Box 7083, MS26 Indianapolis, IN 46207-7083
Comments on this draft amendment will be accepted until 4:30 PM Eastern Time August 8, 2025, via email to backhome.indiana@fssa.in.gov or via mail to the address below: Family and Social Services Administration Office of Medicaid Policy and Planning Attention: Amanda Wills, Indiana PathWays for Aging Manager 402 W. Washington St., W374 Indianapolis, IN 46207-7083
Public Comment on December 2025 H&W, TBI & PathWays Waiver Drafts
To the Indiana Family and Social Services Administration (FSSA):
I am submitting this comment to express significant concerns regarding the adequacy and accessibility of the public input process for the proposed December 2025 Health & Wellness Waiver amendments and concurrent rule changes. While the state undertakes a crucial "reset" of long-term services and supports, the current approach fundamentally undermines meaningful stakeholder engagement and risks policy outcomes that do not fully reflect the needs of Hoosiers.
These issues, combined with substantive changes within the waiver itself, represent a concerning shift away from person-centered planning and equitable access. Many provisions introduce excessive administrative burdens, reduce flexibility for families, and create potential legal and operational conflicts with federal Medicaid regulations and civil rights law. This risks reducing both the quality and availability of essential services, moving towards a more institutionalized, compliance-driven model.
My concerns center on several critical areas that directly hinder genuine participation and effective service delivery:
I. Failure to Provide Reasonable Notice
The public input process used for these waiver amendments has been deeply flawed. I am concerned by the overwhelming volume of complex changes, inconsistent dissemination of critical information, and the limited, often inaccessible nature of public engagement opportunities. Together, these shortcomings severely hinder meaningful stakeholder participation and risk producing policy decisions that fail to meet the actual needs of Hoosiers.
One troubling example: a prior waiver amendment carried an effective date of July 1, 2025, yet was not posted publicly until July 14—nearly two weeks after it took effect. Even then, it was not formally announced to stakeholders until July 21. This provided almost no opportunity for public awareness, review, or input before the changes took effect. Compounding the concern, a new amendment was submitted almost immediately afterward, adding yet more complexity and confusion.
This rushed and opaque process undermines the spirit of transparency, violates the intent of stakeholder engagement under 42 CFR §441.304(f), and erodes public trust in Indiana’s waiver development process. Combined with the Overwhelming Volume of Simultaneous, Contradictory Changes, there was insufficient time for families to provide meaningful feedback. Waiver and Medicaid policies are undergoing rapid, repeated, and often contradictory changes. Stakeholders are tasked with reviewing an immense volume of complex material—including the newly approved waiver July 2025 versions, the complete repeal and rewriting of the 460 IAC 14 Vocational Rehabilitation Rule, alongside significant amendments to six different Medicaid waivers (PathWays 1915(b), PathWays 1915(c), CIH, FSW, Health & Wellness, and TBI) and taking comments on restricting ABA services—all within an unreasonably condensed and overlapping timeframe.
This pervasive instability creates a constant state of uncertainty, making it nearly impossible for families and providers to understand current rules or plan effectively, and ultimately undermines trust in the system.
II. Flawed Public Input and Inconsistent Communication
I am deeply concerned by a consistent pattern of inadequate communication and engagement from FSSA that actively obstructs informed public input:
Passive and Inconsistent Communication Strategy: FSSA’s communication strategy remains largely passive and inconsistent, despite the complexity and impact of these changes. While summary sheets and presentation-style webinars are occasionally released, these methods lack meaningful opportunities for participant engagement or access to knowledgeable support. Important updates are often disseminated inconsistently, sometimes through private associations (e.g., IAHHC members) rather than consistently through official state channels, creating inequitable access to vital information.
Lack of Meaningful Two-Way Engagement: There is a critical absence of genuine two-way engagement, such as accessible Q&A forums, responsive listening sessions, or formal response tracking for stakeholder input. Attempts to seek clarification are often met with a lack of response, and live comment is frequently suppressed during informational meetings.
Insufficient Clarity on Complex Processes: This communication gap leads to significant confusion, particularly around critical new processes like the Level of Care (LOC) transition. There is a severe lack of clarity on:
Specific criteria or thresholds that may result in NFLOC disqualification.
The projected number of individuals expected to be affected.
What to expect if disqualified.
Available participant options if FSW reserve capacity is met.
Detailed transition steps if able to move to FSW.
This pattern of inadequate communication leaves families uninformed or misinformed, undermining their ability to make person-centered decisions or advocate for appropriate care. Participants and families deserve clear, timely, and understandable information—especially when policy shifts directly affect their eligibility and access to care.
III. Discrepancy Between Stated Waiver Purpose and Actual Policy Impacts
The waiver’s stated "purpose" summary does not fully or transparently reflect the true nature and detrimental impact of several proposed changes in the December 2025 Waiver amendment fails to fully or transparently reflect the true nature, scale, and detrimental impacts of the proposed changes. It uses neutral or technical language to obscure substantial policy shifts that reduce access, increase caregiver and provider burden, and jeopardize community living. Key omissions and misrepresentations include:
Undisclosed Service Reductions for Family Caregivers: The amendment presents the 40-hour per week cap on Attendant Care provided by relatives (including parents and adult children) as a routine clarification. In reality, it is a significant new restriction on services that many families rely on for full-time care. This change may result in:
o Loss of trusted, qualified family caregivers,
o Institutionalization or placement in foster/group settings due to insufficient coverage,
o Provider withdrawal from hard-to-staff rural or high-acuity areas.
The state’s framing fails to acknowledge that this is a service reduction with life-altering consequences, particularly for individuals with the highest support needs.
Indirect Service Limitations and the Erosion of "No Cost Limit" Principle: The waiver draft prominently states that Indiana "does not apply an individual cost limit" when determining eligibility for home and community-based services. This commitment is vital, theoretically ensuring that individuals are not denied access to the waiver solely based on the anticipated high costs of their unique care needs. However, a closer examination of the proposed changes reveals a concerning strategy that appears to circumvent this "no cost limit" principle through indirect and potentially harmful means.
While total individual service hours may not be explicitly capped, the December 2025 draft proposes to "implement related limit to aggregate maximum of forty (40) hours per week that may be provided by LRIs" for Attendant Care. This rigid hourly cap also explicitly applies to Legal Guardians providing this service. This places an arbitrary hourly limit on paid care for critical family caregivers based purely on their relationship to the participant.
This approach suggests an attempt to realize cost savings not by directly limiting the total service hours an individual is authorized to receive, but by restricting who can provide those paid hours when those providers are family members (Legally Responsible Individuals and Legal Guardians). This strategy overlooks the fundamental realities of high-acuity, complex care:
Intensive Needs Require Comprehensive Support: For individuals requiring continuous ventilator care, Total Parenteral Nutrition (TPN), or extensive assistance with all Activities of Daily Living, care needs routinely and legitimately exceed 40 hours per week.
Family Caregivers Fill Critical Gaps: In many instances, family members, including LRIs and Legal Guardians, are often the most consistent and often the only willing and qualified providers for these highly complex, intimate, and demanding needs. They frequently provide care well beyond a standard 40-hour week, often out of necessity and dedication, to prevent institutionalization. By imposing this arbitrary 40-hour limit on paid care by family caregivers, the state, in practice, severely restricts the available pool of qualified and trusted care providers. This policy, rather than ensuring cost-effectiveness through genuine efficiency or improved outcomes, risks achieving "savings" by:
Forcing Uncompensated Labor: It effectively compels families to provide essential care beyond the 40-hour limit without compensation, exacerbating caregiver burnout, financial strain, and personal health decline.
Jeopardizing Health and Safety: It creates a dangerous gap in necessary paid support, potentially compromising the health and well-being of individuals who require continuous or intensive care, leading to increased risk of medical emergencies.
Driving Institutionalization: When families can no longer sustain the uncompensated burden, individuals who meet a nursing facility level of care, and who could otherwise thrive in the community, may have no option but costly institutional placement. This directly contradicts the waiver's core purpose of avoiding institutionalization and shifts a significant financial burden back to the state's institutional budget.
The state's commitment to "No Cost Limit" for individual eligibility must genuinely extend to ensuring that qualified care is actually accessible and adequately supported in the community, regardless of who provides it. This means preventing indirect service limitations based solely on familial relationships. We urge FSSA to immediately reconsider and remove these arbitrary hourly caps on family caregivers to truly uphold the principle that individual needs, not arbitrary cost-saving measures, drive service provision and to prevent a critical undermining of the Waiver's foundational goals.
The waiver amendment quietly reduces the maximum number of individuals permitted to receive Structured Family Caregiving services within a single household from four (4) to three (3). This is a substantial programmatic change that will immediately disqualify households currently supporting four eligible individuals from continuing to do so under SFC. This change reduces both access and flexibility for multi-member households, and has not been acknowledged anywhere in the Summary of Changes or the Transition Plan.
Minimization of Documentation and Administrative Burdens: The stated purpose refers vaguely to "implementing an updated model for select services"—a phrase that masks substantial new documentation and oversight burdens placed on caregivers and small providers:
Attendant Care now requires hourly narrative documentation, even for routine personal care tasks.
Structured Family Caregiving (SFC) imposes multi-element daily logs and increases the number of home visits and introduces a new requirement that RN or LPN home visits must happen 2x, despite the fact nurses are not allowed to provide clinical support when working for a non-medical company and provides no funding increase or explanation of outcomes that will be gained.
These requirements are not editorial clarifications—they are operational overhauls. They will force many providers, including family caregivers, to reduce hours or exit the system entirely. No compensation is provided for the additional time or liability incurred.
These are not routine updates; they are policy shifts that limit who can provide care, how much, and under what circumstances. Presenting them as “clarifications” is misleading and undermines informed public input.
No Acknowledgment of Risk to Community Integration: The amendment purpose completely omits the risk of institutionalization. In reality, the proposed changes will:
Delay or block access to HCBS for many individuals due to staffing and documentation constraints,
Remove individuals from the waiver waitlist due to systemic delays (e.g., unresolved Medicaid status, hospitalizations, or provider unavailability),
Result in individuals aging out, declining, or dying in institutional settings before they can access services.
Omission of Core HCBS Violations: The summary omits the fact that many of these changes could directly result in reduced services, violate the least-restrictive environment standard, and actively undermine community integration by severely limiting flexibility, natural supports, and participant/provider choice—conflicting with 42 CFR §441.301 and the ADA.
IV. Required Transition Plan Checkboxes Were Improperly Left Unchecked
Under 42 CFR §441.301(f)(1)(v), CMS requires states to submit a Transition Plan (Attachment #1) with any waiver amendment that introduces changes impacting services, eligibility, provider standards, or participant access. However, the Transition Plan included in Attachment #1 of the December 2025 Waiver amendment does not fully comply with federal transparency requirements. While CMS allows states to submit waiver amendments, it also requires that any proposed change be clearly disclosed in the Transition Plan to allow for meaningful public input. In this case, Indiana’s Transition Plan omits several material changes that should have been identified and explained.
“Adding or decreasing limits to a service or a set of services, as specified in Appendix C”
This box is improperly left unchecked, despite the amendment introducing a new service limit within the Attendant Care definition. Specifically, the waiver states:
“Authorize LRIs to provide Attendant Care and implement related limit to aggregate maximum of forty (40) hours per week that may be provided by LRIs.”
This marks the an expansion to Legally Responsible Individuals (LRIs)—defined as spouses and parents of minor children—are permitted to deliver Attendant Care. However, this new allowance comes with a strict cumulative cap of 40 hours per week total across all LRIs, not per caregiver. This means that if two LRIs share caregiving duties, the combined total of their paid Attendant Care hours cannot exceed 40 hours per week—a limitation that may fall far short of actual need in high-support households.
The waiver also imposes a new 40-hour per week cap on Attendant Care services when provided by Relatives, a broader category that was previously allowed to provide services without such a restriction.
The term “Relative” includes: Parent of an Adult (natural, step, adopted, in-law), Grandparent (natural, step, adopted), Uncle (natural, step, adopted), Aunt (natural, step, adopted), Brother (natural, step, half, adopted, in-law), Sister (natural, step, half, adopted, in-law), Child (natural, step, adopted), Grandchild (natural, step, adopted), Nephew (natural, step, adopted), Niece (natural, step, adopted), First cousin (natural, step, adopted)
This constitutes a clear and measurable restriction on the quantity of service that can be delivered by provider types previously permitted without hourly caps. It directly impacts families who rely on trusted, consistent care from relatives—many of whom currently provide more than 40 hours of care per week. Families currently relying on full-time relative caregivers will see a quantifiable drop in allowable service hours.
The limit is documented in Appendix C and was not present in prior drafts, making this a material service reduction.
The waiver amendment quietly reduces the maximum number of individuals permitted to receive Structured Family Caregiving services within a single household from four (4) to three (3). This is a substantial programmatic change that will immediately disqualify households currently supporting four eligible individuals from continuing to do so under SFC. The implications are serious:
Families already providing care to multiple related individuals—such as siblings with disabilities or aging parents with shared caregiving needs—may lose the ability to access reimbursement for one of those individuals, even if they were previously approved and actively receiving services.
This change reduces both access and flexibility for multi-member households, and has not been acknowledged anywhere in the Summary of Changes or the Transition Plan.
Leaving this box unchecked conceals the scope of this policy shift and violates CMS expectations for transparency under 42 CFR §441.301 and §441.304. Moreover, the waiver provides no plan to support participants in transitioning to alternative caregivers to compensate for the lost hours, further compounding the risk of service disruption.
2. “Making any changes that could result in reduced services to participants”
This box is also left unchecked, yet the 40-hour relative cap will directly reduce the number of service hours some participants are currently authorized to receive. This reduction:
Disproportionately affects families in rural areas or with high care needs;
May force transitions to unfamiliar providers or institutional settings;
Reduces continuity and stability in care relationships.
Even if the state frames this policy as expanding access by authorizing LRIs, the net effect is a restriction for those already relying on LRIs for more than 40 hours per week. This constitutes a decrease in actual service provision—meeting CMS’s threshold for disclosure under this checkbox.
In addition:
The waiver imposes excessive and clinically inappropriately style documentation requirements for both Attendant Care and Structured Family Caregiving (SFC) creating substantial new administrative burdens without any additional reimbursement or implementation supports.
Attendant Care now requires hourly narrative notes that include start/end times, task summaries, task outcomes, any medical or behavioral events (even if none occur), and two signatures per hour—for every shift, every caregiver, every day.
SFC caregivers must complete comprehensive daily logs covering health, mood, behavior, sleep, diet, medications, and activities—regardless of whether changes occurred.
It introduces new requirements for unfunded RN oversight, including an increase in required in-person home visits—adding at least four extra visits per year. These requirements will disproportionately burden non-medical home care providers, particularly smaller agencies that do not have nursing staff, reducing availability for underserved communities.
These changes are not minor clarifications. They will directly reduce the amount of care many participants can receive, particularly those with high support needs or those in rural areas where provider choice is already limited by:
Reducing the amount of care that participants can receive;
Shortening the amount of time providing direct care due to time spent on compliance;
Causing the loss of qualified caregivers and providers unwilling or unable to comply with the new demands.
Caregivers—especially family members—will experience reduced effective pay, as more of their time is diverted to unpaid administrative tasks. This will accelerate burnout, workforce withdrawal, and shrink the already fragile caregiver network or lead to provider withdrawal.
All of these impacts clearly meet CMS’s threshold for disclosure under “changes that could result in reduced services to participants,” yet the Transition Plan fails to acknowledge it.
Worse, the state provides no plan to help families transition, no support to cover the hours lost, and no acknowledgment of the harm.
These are not clarifications—they are cuts. Cuts to flexibility, to hours, to caregivers, and to quality.
Under CMS regulations, changes of this magnitude should include:
A clear explanation of the purpose and rationale;
A timeline and implementation strategy;
An assessment of participant impact;
Safeguards to preserve continuity of care.
None of these elements are present in the submitted Transition Plan.
Additionally, the waiver offers no transitional support or contingency plan for families who will lose hours under the new relative cap or struggle to meet documentation or RN oversight rules. These omissions are particularly harmful in rural areas and for individuals with complex care needs, where alternative providers are not readily available. Moreover, the waiver does not offer any transitional guidance or supports to help families or providers adapt to these heightened oversight demands—further compounding service disruption risk .Without proper transition planning, these families face an increased risk of care disruption, unmet needs, and potential institutionalization.
V. Critical Technical Oversights and Undue Burdens
Beyond misrepresentations, there are technical oversights in the waiver application and new rigid policies that may unintentionally cause confusion, limit transparency, and create significant barriers to services:
Incomplete Level of Care (LOC) Representation: While Indiana currently permits individuals who meet a hospital Level of Care (LOC) to access waiver services, the application does not reflect this by checking the corresponding option under the "Level(s) of Care" section. Including this selection is essential to ensure consistency between stated policy and current practice.
Omission of Key Eligibility Pathway: Similarly, the waiver application should formally indicate that Indiana serves "Disabled individuals age 18 or younger who would require an institutional level of care (TEFRA 134 eligibility group under §1902(e)(3))." This pathway is essential for maintaining eligibility for children with significant medical or developmental needs. Clarifying its inclusion would help avoid confusion, prevent unintended disenrollment, and affirm Indiana’s ongoing commitment to serving this population.
Rigid 180-Day Enrollment Deadline: The addition of a strict 180-day deadline for enrollment, without clear safeguards, is deeply concerning. This rigid timeline removes individuals from the waiver waitlist if they are unable to accept services within six months, creates a false impression of low demand while ignoring the complex, often systemic barriers that delay service initiation.
Many individuals face unavoidable delays due to:
o Provider shortages, particularly in rural or underserved regions;
o Lack of available caregivers or gaps in the approved provider network;
o Extended hospital stays, skilled nursing placement, or complex discharge planning;
o Pending Medicaid eligibility determinations, redeterminations, or appeals;
o Delays in processing documentation, such as LOC assessments, service authorizations, or physician forms;
o Breakdowns in communication between agencies, families, and case managers;
o Lost or misdirected mail, outdated contact information, or language barriers;
o Administrative errors or misguidance, including incorrect instructions from local DFR offices or misinterpretation of waiver processes by case management entities.
Removing individuals from the waitlist simply because they are not able to accept services within 180 days—often through no fault of their own—fails to reflect a reduced need. Instead, it artificially suppresses the waitlist numbers, masking the severity of unmet demand and allowing the state to justify lower enrollment projections.
This practice is especially dangerous when paired with the reduced waiver capacity and tighter eligibility criteria proposed in the December 2025 Waiver draft. Individuals who are institutionalized due to delays in accessing HCBS may become ineligible for the waiver by the time their name reaches the top of the list—or they may never return to community living at all.
Indiana’s waiver system must recognize that delays in accepting services are often the result of systemic dysfunction—not a lack of interest or need. Individuals and families navigating these challenges should be supported, not penalized.
VI. Delayed Eligibility for Medically Fragile Individuals: “Time is of the Essence” Cases
The current waiver is silent on the urgent need to establish immediate eligibility pathways for individuals whose medical conditions clearly meet an institutional level of care and for whom delays in access to services are especially dangerous. These “time is of the essence” situations demand immediate attention and fast-tracked access to HCBS in order to prevent harm.
The following categories represent high-risk populations where delayed eligibility frequently leads to unnecessary institutionalization, worsened outcomes, or even death:
Newborns with severe congenital or complex medical conditions
(e.g., those requiring ventilators, feeding tubes, or extended NICU stays)
Children and adults with sudden or progressive conditions
(e.g., ALS, advanced muscular dystrophy, traumatic brain injury, or paralysis)
Individuals dependent on intensive medical technology
(e.g., tracheostomies, ventilators, central lines, total parenteral nutrition (TPN))
In each of these cases, time is not a luxury. Delayed access to waiver services forces individuals and families to face impossible choices:
Remain institutionalized longer than medically necessary;
Incur overwhelming medical debt while awaiting coverage;
Or go without essential supports, jeopardizing safety and health.
This contradicts both the intent of the §1915(c) waiver program and the federal HCBS mandate under 42 CFR §441.301, which requires states to provide services in the least restrictive setting appropriate to individual need. Delays are especially harmful because it:
Prevents Timely Transition to Home and Community Settings:
Many medically fragile individuals remain unnecessarily institutionalized because the waiver process is too slow to support a safe return home—even when their care needs are already clearly documented.
Increases Risk of Complications and Permanent Decline:
Without immediate access to therapies, nursing, or essential equipment, individuals may experience preventable setbacks, regression, or permanent loss of function.
Raises Long-Term Costs to the State:
Prolonged hospitalizations or institutional care cost far more than equivalent services provided in the home. Delays are not cost-saving—they are cost-escalating.
The foundational purpose of a §1915(c) HCBS waiver is to provide services to individuals who, "but for the provision of such services," would necessitate costly institutional care. For these infants, delayed access to HCBS means prolonged and expensive hospital stays or direct admission to institutional settings, as these are the only alternatives when community-based supports and Medicaid covers is not immediately available.
This is not a minor adjustment. It represents a sharp departure from previously stated expectations and undermines access to critical home and community-based services (HCBS) for older adults and individuals with disabilities. While we understand that budget constraints are influencing enrollment targets, the waiver provides no detailed public explanation or data-driven justification to show how this reduced capacity will meet statewide need—especially in the face of a growing waitlist and continued demand for HCBS.
Such a reduction risks:
Longer delays for needed services;
Increased risk of institutionalization;
Disruption of care continuity for vulnerable individuals;
And increased strain on families and caregivers already struggling to find support.
FSSA needs to provide a plan for mitigating the effects of reduced enrollment, particularly for individuals at risk of institutionalization.
Prolonged hospitalizations and institutional care cost significantly more than equivalent services delivered in the home. Delaying access to HCBS is not cost-saving—it is cost-escalating. The foundational purpose of a §1915(c) waiver is to provide services to individuals who, but for the provision of such services, would require institutional care. For individuals with complex needs, delayed access often results in unnecessary hospitalization or institutional placement simply because essential home-based supports are not made available in time.
This approach undermines the goals of Medicaid HCBS and leaves families without viable options, especially when no alternative services are accessible during periods of transition, hospitalization, or eligibility processing.
VII. Reduction in MFP Reserved Capacity Limits Community Reintegration
Additionally, the proposed reduction in reserved capacity for Money Follows the Person (MFP) transitions—from 1,000 to 750 slots—raises serious concerns, particularly given Indiana’s growing waitlist for waiver services means that more individuals with disabilities are at risk of unnecessary institutionalization while waiting for access to home and community-based services (HCBS). For these individuals, MFP becomes the primary and often only pathway for returning to the community. Cutting reserved capacity for this federally supported transition program limits the state’s ability to facilitate reintegration, especially at a time when more individuals will depend on it.
Even in the face of state budget constraints, Indiana remains bound by federal requirements under the Americans with Disabilities Act (ADA) and Olmstead v. L.C., which mandate that services be provided in the most integrated setting appropriate to the individual’s needs. The HCBS Settings Rule (42 CFR §441.301(c)(4)) further affirms that states must support full access to the benefits of community living and avoid policies that unnecessarily institutionalize individuals. Reducing MFP reserved capacity—particularly without expanding other community transition pathways—risks violating these obligations.
Furthermore, MFP transitions are not just a civil rights imperative — they are a cost-effective Medicaid strategy. Community-based care is significantly less expensive than institutional care, and MFP has a proven track record of reducing long-term costs while improving individual outcomes. Reducing access to this pathway is both fiscally shortsighted and contrary to Indiana’s stated goals of promoting independence and community living.
VIII. Failure to Allow HCBS During Hospitalization Creates Dangerous Gaps
The draft continues to exclude all HCBS services during hospital stays, despite federal flexibility under Section 1902(h)(1) of the Social Security Act. This restriction is out of step with Indiana’s own Family Supports and CIH Waivers, which permit HCBS support during short-term hospitalizations.
Allowing HCBS services in hospital settings would:
Ensure safety for individuals with dementia, mobility issues, or confusion in stressful or unfamiliar environments;
Help prevent hospital-acquired complications and maintain routines especially for individuals with dementia, communication needs, or mobility impairments;
Support smoother discharge planning and transitions back to home;
Avoid unpaid caregiver labor for family members who are actively providing support at the bedside.
The Waivers should be updated to align with the flexibility already provided in the Family Supports and CIH Waivers, allowing HCBS during brief hospitalizations. Doing so would promote continuity of care, reduce trauma, and ensure better support for older adults and individuals with disabilities during medically vulnerable times.
Indiana must ensure that budget decisions do not undermine its obligations under the Americans with Disabilities Act, the Olmstead mandate, and the HCBS Settings Rule, all of which require sufficient access to integrated, community-based services
IX. Omitted Protections for Providers Facing LOC Errors
While the creation of a Quality Improvement Executive Committee (QIEC) is a step forward, the waiver no longer includes clear protections for providers who deliver services during Level of Care (LOC) evaluation delays or errors.
Previously, Appendix B-6 stated that claims would be corrected or reimbursed if LOC determinations were missed or inaccurate through no fault of the provider. This language has been removed—creating unnecessary financial risk for agencies, especially those serving individuals with complex needs or during transitions.
Without this protection, providers may be penalized for issues outside their control, increasing instability in the provider network and disincentivizing support during vulnerable times in the care journey.
X. Documentation and Oversight Requirements Risk Access and Continuity of Care
Instead of enhancing flexibility and preserving natural supports, the proposed changes concerning Structured Family Caregiving (SFC) and Attendant Care introduce clinical-style oversight, excessive administrative burden, and restrictions that will inevitably reduce access and equity—especially for family caregivers and small providers.
Most notably, this draft waiver introduces unprecedented and excessive documentation requirements for both SFC and Attendant Care that surpass those typically seen in many clinical settings. Previously, Attendant Care, when participant-directed, required detailed timekeeping and caregiver signatures. The new language for Attendant Care (and by extension, other consumer-directed services it influences) imposes hourly documentation requirements that are unrealistic for non-agency caregivers and small agencies.
Every hour of Attendant Care and each day of SFC now appears to demand detailed task summaries, outcome notes, progress toward outcomes and goals, dual signatures (caregiver/participant) at start and end times, service location, and credential verification. This level of micromanagement is utterly unfeasible for natural supports, small agencies, and family caregivers—and it comes with no increase in reimbursement to reflect this substantial new administrative burden.
This extensive documentation directly conflicts with established standards for other waiver services within the same TBI waiver. For instance, Residential Based Habilitation (RBH), a service explicitly focused on "regaining skills" and "measurable goals and objectives", only requires daily entries detailing activities and outcomes. RBH (Habilitative Service): For a service explicitly focused on "regaining skills" and "measurable goals and objectives", the documentation requires recording specific activities/tasks and "outcomes realized from those activities/tasks" for each day services are rendered. Quarterly progress reports also summarize "progress towards service plan outcomes". This level of documentation, while still potentially burdensome, aligns with the habilitative, goal-oriented nature of RBH.
In stark contrast, Attendant Care (ATTC), which provides direct, hands-on care for Activities of Daily Living (ADLs) and incidental homemaking and transportation – fundamentally a support service focused on maintaining function, not necessarily regaining skills – currently mandates the same level of granular daily "outcome" documentation, but for each hour services are rendered. This includes hourly "outcomes realized" and narratives about "any issue or circumstance concerning the individual", along with dual hourly signatures.
This discrepancy reveals a fundamental flaw in the waiver's documentation philosophy:
Misplaced Burden: It places a disproportionately heavier and clinically inappropriate burden on basic, non-habilitative support services like Attendant Care. Demanding hourly "outcomes" for routine ADLs, when a habilitation service (RBH) only requires daily entries for actual skill-building goals, demonstrates a significant misalignment.
Discourages Essential Support: Such excessive hourly documentation for ATTC will inevitably deter providers, particularly individual and family caregivers, from offering this critical hands-on personal care, as the administrative overhead becomes unsustainable.
Undermines Quality: Providers may focus more on meeting documentation quotas than delivering quality care, or they may simply avoid offering services under such unrealistic terms.
Furthermore, the draft waiver introduces inappropriate and unnecessary clinical oversight requirements for non-medical services. For example, the definition of Structured Family Caregiving now implies greater clinical responsibility, with requirements for Registered Nurse (RN) or Licensed Practical Nurse (LPN) home visits, and continuous documentation of "health, mental health, medication, diet, sleep patterns, social activity/community engagement" by the principal caregiver.
Attendant Care, while allowing for Participant-Directed models, still falls under a framework now heavily influenced by these clinical expectations. This imposition of licensed nursing oversight on services federally classified for daily living assistance and basic skill maintenance far exceeds what is appropriate for their federal classification (e.g., Home-Based Habilitation or Personal Care) and creates serious consequences:
Drives up costs for small providers and family-run agencies, potentially pushing them out of the system.
Adds an unnecessary clinical layer that will deter qualified non-medical caregivers and complicate service delivery for services fundamentally designed to support daily living, not skilled nursing.
Conflicts directly with the principle of self-direction for services like Attendant Care. How can families be genuinely empowered to self-direct these services if they are implicitly or explicitly required to hire or contract with a nurse or meet clinical-level reporting for non-medical care? This requirement undermines the very intent of promoting self-direction and flexibility, and risks excluding capable family caregivers who already provide high-quality personal support.
The inclusion of these extensive nursing requirements without a clear, individualized medical necessity demonstration may violate both CMS policy regarding the nature of HCBS and the HCBS Settings Rule (42 CFR §441.301(c)(4)), which prohibits institutional features and unnecessary service barriers in community-based care.
XI. Concerns and Recommendations: Case Management Responsibilities
I appreciate several improvements—particularly the re-adoption of the term Case Management and the inclusion of vital conflict-of-interest protections and Expanding the definition of Case Management to explicitly include advocacy and collaboration
However, despite these positives, I have deep concerns about several aspects of the revised case management responsibilities.
Caseload Limits Must Reflect Increased Complexity
The 65-person caseload cap under the Health & Wellness Waiver remains unchanged from previous drafts, yet the scope of responsibility has significantly expanded. Case managers must now:
Document service-specific requirements across 16 waiver services;
Review Medicaid State Plan prior authorization outcomes;
Interpret clinical needs and oversee service adequacy for medical interventions;
Review employment documentation, home modification contracts, and dispute resolutions.
By contrast, the Family Supports Waiver caps caseloads at 45, despite serving individuals with generally lower acuity. This inconsistency is concerning. National best practices for high-need populations recommend caseloads between 35–50, particularly in systems built around person-centered planning.
Without adjusting the caseload cap—or increasing reimbursement and staffing resources—case managers will be forced to prioritize paperwork over people, undermining both quality and person centered focus.
Remove Assigned Clinical Oversight From Case Managers Duties
In addition it places clinical oversight responsibilities that are Inappropriate for Case Managers. Several requirements in the draft assign case managers responsibilities that fall outside their scope of training or licensure, such as:
Documenting how skilled medical needs are being met and the frequency of clinical interventions;
Interpreting prior authorization denials from Medicaid State Plan services;
Assessing the adequacy of nursing or home health coverage for services like Structured Family Caregiving and Attendant Care.
These tasks should be the responsibility of qualified medical professionals or Medicaid administrators. Requiring case managers to perform them:
Poses risks of error, delay, or non-compliance;
Blurs accountability lines and increases liability exposure;
Undermines the efficiency and accuracy of service planning.
These duties should be reassigned to Home Health Services, Integrated Healthcare Coordination teams, or state Medicaid reviewers—not front-line case managers.
Remove Other Duties Beyond Case Manager Scope
In addition it misplaces legal, financial, and contractor oversight duties that fall outside of the scope of a case manager.
The revised waiver language inappropriately assigns case managers tasks better suited for professionals in construction, finance, or legal compliance, including:
Signing off on home modifications to confirm proper installation;
Verifying financial documents such as bids, receipts, and invoices;
Reporting on landlord disputes or contractor disagreements.
These duties go far beyond the training, authority, or liability coverage of case managers. They are not inspectors, auditors, or attorneys—and asking them to act as such increases both provider risk and participant vulnerability.
Such tasks should be removed from case management roles and redirected to relevant professionals with the appropriate credentials and oversight.
Ensure Proper Coordination of Care Across Providers
They need to first and foremost ensure coordination of care by sharing the finalized person-centered service plan with all providers listed. This supports a shared understanding of goals, expectations, and authorized supports.
Families should not be told that institutional care is the only alternative when individual waiver cost estimate limits are met. Case managers should be required to:
Explore all other options first, including mixed funding strategies and natural supports;
Explain appeal rights or exception processes;
Support individualized care plans that prioritize community living.
There is also a disconnect between families and case managers regarding the different types of Medicaid and the implications of being assigned to the wrong one.
Many families are unaware that remaining enrolled in a Managed Care plan like Hoosier Care Connect (HCC) makes them ineligible for waiver services under §435.217. Case managers should be required to:
Clearly explain the need to disenroll from HCC (or similar plans) when applying for a waiver;
Document this discussion in the service plan to ensure accountability and transparency.
Improve Self-Direction Guidance Through Clear, Accessible Risk Disclosure
Participants opting for self-directed care might receive some information, but they often lack clear, accessible information about the legal and financial risks they assume. Case managers must be provided with—and required to distribute—a plain-language handout covering:
Worker’s Compensation: Clarifying that the participant remains liable for ensuring continuous and adequate coverage, even when supported by a Fiscal Intermediary.
Personal Liability: Describing potential costs of injury lawsuits, wage replacement, or civil fines if insurance lapses or if unsafe working conditions are present.
Negligence Risks: Helping families understand that directing unsafe practices or failing to remedy known home hazards can expose them to legal action under basic tort law (duty → breach → harm).
Scenario-based examples would further improve comprehension. Informed choice cannot occur without this level of clarity.
The state must reconsider the scale, scope, and complexity of case manager responsibilities in this draft. Case managers are essential to the success of the waiver—but they cannot do everything. Piling on clinical, legal, and financial oversight duties without increasing resources or adjusting caseloads sets them up for failure and participants up for inconsistent service.
XII. Adult Day Services Changes
I appreciate the updated structure and clarity provided in the new draft of the Adult Day Services (ADS) section. The introduction of a standardized ADS Level of Service Assessment and detailed staffing and documentation requirements represents an important step toward greater accountability and transparency. The inclusion of quarterly progress reports and clear expectations for provider roles is commendable.
However, I am concerned about several areas that could negatively impact families and providers:
The new scoring system may lead to unintended reductions in service levels without sufficient family input or a clear appeal process.
Staffing requirements for Enhanced and Intensive levels may be difficult for smaller providers to meet, risking loss of access for individuals with higher needs.
Families may not fully understand what each service level includes or how to advocate for the appropriate support without plain-language descriptions.
More clarity is needed around how providers can avoid duplicating State Plan therapies to prevent billing issues or claim denials.
I urge the state to ensure that these changes do not create new barriers to accessing ADS, and to provide training, family education, and flexibility where needed to support successful implementation.
XIII. Adult Family Care (AFC)
The name "Adult Family Care" implies that family members will be actively involved in providing care, yet this service continues to limit or exclude family members from fulfilling this vital role. However, the proposed revisions to the AFC service definition introduce administrative and procedural burdens that are misaligned with the service's purpose and likely to reduce access, strain providers, and undercut the intended quality of care.
1. Excessive and Inappropriate Documentation Burden
The proposed daily documentation requirements are disproportionate to the service being provided. Requiring AFC providers to document daily “outcomes realized” for routine IADL tasks, provide narrative notes about “any issue or circumstance” even when none exist, and collect dual signatures for every entry imposes an unrealistic paperwork burden. This level of administrative demand—without any increase in reimbursement—will discourage participation, particularly among small agencies and individual caregivers who already operate under narrow margins.
2. Onerous Monthly Plan of Care Updates
Mandating monthly updates and submissions of the plan of care to case managers exceeds common standards for home-based supports. This requirement consumes valuable time and resources, forcing caregivers and case managers to focus on paperwork rather than individualized care, especially when the individual’s needs remain stable.
3. Institutional-Style Record Keeping
The documentation standards mimic those of institutional settings rather than person-centered home care. The volume and frequency of data required—including exhaustive personal and medical records with continuous updates—go beyond what is appropriate for a residential, family-style model. This not only imposes a heavy burden on providers but also shifts the tone of care away from individualized support and toward clinical bureaucracy.
4. Contradiction of HCBS Principles
The inclusion of a typographical error stating that AFC provides “high-quality care in an institutional setting” is particularly troubling. This contradicts the foundational purpose of HCBS waivers—to support individuals in the least restrictive, community-integrated environments. Such language must be corrected to avoid confusion and to uphold federal expectations for non-institutional, community-based care.
These issues collectively risk transforming a flexible, home-based support model into an overly medicalized, compliance-heavy program that is inaccessible to many families and providers. AFC must remain a viable, person-centered alternative to institutionalization—grounded in dignity, respect, and practicality.
IVX. Home and Community Assistance (HCA) Service Requirements
I am concerned regarding the definition and implementation standards for Home and Community Assistance (HCA) services as proposed in the current waiver draft. While the intent of this service—to assist individuals with essential household tasks and support a safe, clean living environment—is both valuable and necessary, the associated documentation and reporting requirements are disproportionately burdensome and risk undermining access and provider participation.
1. Excessive and Misaligned Documentation Requirements
The revised HCA service definition imposes documentation requirements that are disproportionate to the nature of the service. For each day of service, providers must log:
A summary of specific reimbursable tasks and their “outcomes”
A narrative describing any issue or unusual circumstance—even if none occurred
These expectations are excessive for non-medical, non-clinical support services like housekeeping, laundry, and meal prep. HCA falls under CMS service category 08 (Home-Based Services), specifically codes 08010 (habilitation) and 08030 (personal care). Yet the documentation framework mirrors that of clinical or therapeutic services—not household support.
This structure adds significant administrative overhead without any increase in reimbursement. For participant-directed workers, small agencies, and family caregivers—especially in rural areas—this burden is unmanageable. The consequences are predictable:
Less time spent on actual care
Lower caregiver pay, as agencies shift funding toward compliance oversight rather than wages
Service loss, as small providers and families exit due to unworkable requirements
Reduced service quality, driven by documentation fatigue and burnout
Expecting “outcome notes” for vacuuming or cleaning bathrooms wastes resources and undermines continuity of care. It does not improve quality—it deters participation and limits access.
2. Quarterly Progress Reports Misapplied to Non-Habilitative Services
The requirement for quarterly written reports—detailing progress toward outcomes, challenges, and “positive events”—is inappropriate for HCA’s role. These are not skill-building or clinical interventions. They are stability services.
Tasks like dusting or taking out trash don’t need to be evaluated for therapeutic progress, such detailed reporting is out of proportion to the service's scope and low-risk nature. Forcing this level of reporting without additional funding drains agency resources and caregiver wages. Staff are paid less, and participants receive less hands-on help—as more time is spent documenting than doing.
The focus for HCA should be simple: Was the task completed to support health, safety, and cleanliness? Reframing HCA as a developmental or therapeutic service misrepresents its purpose and undermines its delivery.
The mandate for quarterly written progress reports for HCA services further compounds the administrative weight. The focus should be on whether the task was completed—not whether it moved the person toward a long-term outcome. IADL support is a stability service, not a developmental one.
XV. Skilled Respite Services
As a provider who works tirelessly to stay informed and up to date on waiver service changes, I want to voice my thoughts on the proposed definition for Skilled Respite services. It's truly good news to see Home Health Aide (RHHA) services explicitly included under Skilled Respite. While I now realize this option was technically available in the previous version, it easily got lost in the sheer volume of constantly shifting policies. It’s hard to keep up when things change so quickly, and often positive steps like this get missed.
However, even with these welcome additions, there are aspects of the Skilled Respite language that are frankly, worrying. They threaten to make it harder, not easier, for families to get the vital relief they desperately need:
The way Skilled Respite documentation is set up feels overwhelming, demanding a level of detail more suited to a hospital chart than a family's home. Providers are asked to record for each time services are rendered:
Specific tasks and their "outcomes". For a temporary relief service, expecting measurable "outcomes" from every single interaction feels detached from reality. Respite is intended to relieve caregivers, not to achieve clinical milestones .
A narrative of "any issue or circumstance concerning the individual...even if nothing unusual occurred". This creates an expectation for daily problems or, worse, leads to providers feeling pressured to invent minor details just to fill a form.
On top of this, providers also need to submit quarterly written progress reports, detailing "progress towards service plan outcomes" and "challenges hindering progress". This significant administrative load for a service whose primary goal is often maintenance and caregiver relief. While some individuals may have respite tied to specific habilitative goals, applying this universally can be excessive. These rules don't come with any extra payment, meaning caregivers are left doing more for the same amount, making it harder to attract and keep the skilled professionals we desperately need.
XVI. Assisted Living
The December 2025 waiver draft imposes an institutional model of oversight on a service that was never meant to be clinical. Assisted Living is designed to offer individuals a home-like setting with support for daily living—not to turn providers into data clerks documenting sleep patterns and social interactions as if each day were a medical intervention.
The new documentation rules require daily narrative notes—even when nothing changes—and quarterly progress reports describing “outcomes” for routine tasks like brushing teeth or eating a meal. This level of oversight may make sense in a hospital, but it’s completely out of place in a residential setting focused on dignity and independence.
What’s worse: this administrative burden is not supported by increased funding. Providers are expected to absorb the extra work, pulling resources away from direct care. The result? Fewer providers willing to offer this service, and more individuals at risk of being pushed back into institutional care.
These aren’t minor paperwork tweaks. They’re a fundamental shift that threatens access, quality, and the core values of community-based living.
XVII. Benefits Counseling Service
My primary concerns center on unrealistic documentation burdens, a lack of clear provider qualifications, and absent coordination mandates:
Excessive Documentation Ambiguity: The waiver's requirement for daily "units of service rendered" without clear guidance on expected detail risks creating burdensome, unproductive paperwork for providers. This ambiguity can divert valuable time from direct counseling, undermining the service's purpose and potentially deterring qualified providers. We urge simplified, outcome-focused daily documentation that clearly ties to work incentive plan goals, avoiding generic daily entries, to maximize direct assistance.
Undefined Expertise for a Complex Service: The service currently lacks explicit, specialized qualifications or training requirements for Benefits Counselors beyond general waiver standards. Navigating intricate public benefits programs demands expert knowledge. Without verifiable qualifications, there's a serious risk of inaccurate advice leading to devastating financial consequences for participants. We urge mandating specific, specialized qualifications and training (e.g., Work Incentives Counselor certification) to ensure high-quality, accurate guidance.
Critical Gap in Inter-Agency Coordination: While the waiver rightly prohibits duplication with Vocational Rehabilitation (VR) and IDEA services, it fails to mandate how Benefits Counseling will proactively coordinate with these essential employment support programs. This omission can lead to fragmented support, individuals falling through the cracks, and delays in accessing critical assistance. We urge explicit Service Standards requiring seamless information exchange, defined referral pathways, and integrated service planning with VR, IDEA, and other employment support services.
For Benefits Counseling to truly empower Hoosiers with disabilities, it must be supported by clear, practical, and coordinated policies. These revisions are essential to ensure efficient service delivery and safeguard participants' financial well-being on their path to employment.
XVIII. Caregiver Coaching: Misaligned Focus and Documentation Burden
The stated purpose of Caregiver Coaching is to "equip the individual’s unpaid caregiver(s) with the necessary skills to manage the individual’s medical conditions and associated behavioral health needs," and explicitly states that "this is not a service provided directly to the individual, but to their unpaid caregiver(s)". Yet the required documentation contradicts this purpose entirely.
Despite being designed as a caregiver-facing support service, the waiver requires providers to extensively report on the individual receiving care—not the caregiver being coached. Each day of service must include the waiver participant’s name, IHCP number, service rendered, and even progress toward the individual’s life outcomes. This completely misrepresents the true focus of the service and burdens coaches with data collection that has little to do with the actual caregiver training or support being provided.
The mismatch becomes even more apparent with the mandatory monthly emergency/crisis plan updates. If a caregiver needs coaching for burnout or behavior strategies, why are we requiring providers required to generate, review, and redistribute a complex crisis plan that includes detailed medical orders, advance directives, intricate backup care logistics for the waiver participant?
If the coaching relationship is truly about supporting the caregiver, then the documentation should logically reflect their progress, their skill development, and their needs as the focus. Instead, this service has been designed as if it is a clinical support service for the waiver participant, carrying all the associated administrative and regulatory burden.
This profound misalignment risks discouraging agencies from offering Caregiver Coaching at all—and worse, it threatens to turn a valuable support service into yet another layer of unproductive paperwork that ultimately fails to meaningfully support the very caregivers it’s designed to help.
XIX. Equipment, Modifications, and Repair Services – Addressing Access, Equity, and Functionality Concerns
We are submitting comments on the vital services of Home Modifications and Assessments, Specialized Medical Equipment and Supplies, and Vehicle Modifications. These services are absolutely essential for individuals with disabilities to live safely, independently, and participate fully in their communities, often preventing costly institutionalization. However, current policies within the waiver create significant barriers that undermine the very purpose of these crucial supports.
1. Bid Requirements Create Delays and Inequity The requirement to obtain two itemized bids for home, vehicle, and medical equipment modifications introduces significant access barriers—particularly in rural areas, underserved communities, or for niche adaptive needs where only one qualified vendor may exist. This issue is exacerbated by restrictive policies that mandate award to the lowest bid, rather than the most qualified provider. This often delays service initiation, discourages provider participation, and forces families to accept substandard work due to price-based selection rather than quality or safety—especially for critical modifications like ramps, lifts, and bathroom conversions.
2. Barriers to Modifications in New Homes or After Life Changes Families who move or purchase homes due to disability needs often discover that the waiver will not support accessibility modifications in a newly acquired home, even if the move is driven by medical necessity, lack of space, or to accommodate caregivers. Furthermore, current rules limit significant second modifications—even after aging, injury, or medical regression—by largely excluding "new construction or significant remodeling/reconstruction" unless there's a documented, acute medical need. This creates systemic inequities, pushing families to remain in unsafe, unsuitable, or overcrowded homes, rather than facilitating long-term residential stability and community integration.
3. Excessive Exclusions for Cost-Effective Solutions and Safety Numerous common-sense tools that enhance mobility, access, or health outcomes are explicitly excluded from coverage. This includes:
Pre-installed vehicle modifications, even when cheaper and immediately available.
Adaptive tricycles, therapeutic pool lifts, or stair glides—often essential for exercise, mental health, or fall prevention.
Repairs after accidents or wear-and-tear, even when the modification is a sole access point (e.g., broken wheelchair ramp or vehicle lift).
Individuals are left without critical supports for functioning safely and independently. By limiting repairs and excluding common adaptive tools, the waiver fails to uphold the principle of adequate services and undermines participants’ quality of life.
4. Maintenance Caps and Denials Place Burden on Families: A $1,000 annual cap on repair and maintenance for previously approved modifications or equipment is not adjusted for inflation or the actual cost of parts/labor. Furthermore, if an item is damaged outside the waiver's scope—such as in a vehicle accident—replacement or repair is explicitly excluded, even if it results in total loss of access. This leads to long service gaps, imposes unexpected out-of-pocket expenses on families already stretched thin, and can directly contribute to institutionalization or hospitalization.
XX. Integrated Health Care Coordination (IHCC)
We submit this comment to express concern regarding the structure and implementation of the Integrated Health Care Coordination (IHCC) service outlined in Indiana’s December 2025 waiver amendment. While the intent behind IHCC—to improve health outcomes by integrating medical and social supports—is important and necessary, the current design introduces significant barriers that may limit its effectiveness in practice.
The service is designed to coordinate care for individuals with chronic conditions and complex needs, such as dementia, diabetes, or behavioral health challenges. It includes valuable components like medication review, hospital-to-home transition support, and advance care planning. However, the implementation framework raises multiple concerns.
First, the documentation requirements are exceptionally burdensome. Providers are expected to record detailed timeframes, specific activities performed, narrative descriptions of the individual's condition, and obtain multiple signatures. For a service meant to streamline care, the paperwork burden risks consuming a disproportionate share of provider time and energy—diverting attention from actual care coordination and support.
Second, the required visit and consultation frequency lacks flexibility. Weekly consultations and at least one in-person visit per month may not align with the needs of every participant. Individuals with stable health may not require this level of oversight, while those with more intensive needs may require a completely different structure. The rigid approach could inadvertently reduce efficiency and frustrate both providers and participants.
Third, the cap of 16 hours per month—inclusive of travel time—is likely insufficient for individuals with multiple providers, complex medication regimens, or frequent transitions between care settings. Coordinating across medical, behavioral, and community services often takes significant time, and this hourly cap may prevent timely, proactive interventions.
Additionally, the quarterly progress reporting requirement adds another layer of administrative demand. These reports must include detailed progress toward service plan outcomes, challenges, and significant events. In already overstretched systems, this requirement risks becoming a compliance exercise rather than a meaningful tool for monitoring participant outcomes.
In short, while IHCC as a concept offers great promise, the current framework imposes inflexible structures, unrealistic documentation burdens, and limits on trusted caregiver involvement—threatening to undermine the very goals the service is designed to achieve. These structural issues warrant close attention to ensure IHCC enhances, rather than complicates, the coordination of care for individuals with complex needs.
XXI. Expand Behavior Management Access to Include Older Adults
The Behavior Management/Behavior Program and Counseling service as currently defined appears disproportionately tailored to individuals with traumatic brain injury (TBI) or developmental disabilities. However, the core features of this service—such as emotional regulation training, stress reduction, assertiveness coaching, and development of individualized behavior support plans—are equally vital for older adults and children with developmental behavioral issues.
Aging waiver participants often experience behavioral and emotional challenges due to:
Cognitive changes from Alzheimer’s disease or other dementias
Mood disorders including depression, anxiety, or grief
Behavioral symptoms like agitation, wandering, or withdrawal
Social isolation and difficulties adjusting to new limitations
These issues may not meet criteria for psychiatric intervention, but they directly impact the ability to remain safely at home and should be supported through Medicaid-funded HCBS services.
Yet under the current waiver language, access to Behavior Management services may be unintentionally limited due to:
Professional qualifications that are overly restrictive or skewed toward brain injury/disability specialists
A service definition that fails to explicitly recognize aging-related behavioral needs
Reimbursement rules that exclude family caregivers, even when trained and supervised
This creates a critical gap in behavioral health support for the aging population—particularly those served under the H&W waiver, where many individuals have complex medical needs, chronic illness, or dementia but no developmental disability diagnosis.
We urge the state to revise the waiver language to:
Clearly articulate that this service is available and appropriate for older adults and those with age-related behavioral needs;
Broaden the credentialing language to allow for geriatric behavioral health professionals, licensed clinical social workers, or other appropriately qualified providers to deliver this service;
Allow for caregiver training and inclusion in behavior plan implementation for aging individuals, especially when families are providing daily support.
Expanding eligibility and clarifying intent will help ensure equity across populations and prevent unnecessary institutionalization—supporting Indiana’s broader goals under all three waivers to maintain individuals in the least restrictive, most community-integrated setting possible, in alignment with the Olmstead decision and 42 CFR §441.301.
Recommendations for the December 2025 Waiver Amendments
To genuinely uphold its commitment to person-centered care, equitable access, and fiscal responsibility, we urge the Family and Social Services Administration (FSSA) to implement the following critical recommendations:
I. Public Input & Transparency
Reopen and extend the public comment period to allow meaningful stakeholder engagement across all December 2025 waiver amendments.
Ensure all waiver-related announcements, billing guidance, and provider communications are distributed through official FSSA and MCE channels—not shared exclusively with trade associations. All providers must have equal access to timely, accurate information that impacts claims, service delivery, and compliance.
Implement Meaningful and Comprehensive Website Updates: Ensure that the official FSSA website provides genuinely comprehensive updates, particularly for critical information like the PathWays waiver. Develop proactive, participant-facing guides that explain the LOC process, potential outcomes, appeal rights, and options for maintaining continuity of care. The site must be robustly and meaningfully updated to reflect the most current policies and incorporate stakeholder feedback, rather than merely being re-posted or left outdated.
Establish Consistent and Centralized Posting Locations: Consolidate all crucial Medicaid waiver changes into a single, reliable, and consistently updated central repository on the official FSSA website. Eliminate the current practice of posting documents across various, unpredictable, and unannounced locations that obstruct public access.
Ensure Accurate and Timely Public Announcements: FSSA must end the pattern of misleading announcements regarding where new waiver versions will be posted (e.g., indicating the BDS Reset site but posting elsewhere). All public notifications must be accurate, timely, and clearly direct stakeholders to the precise location of all relevant documents.
Create interactive opportunities for families and stakeholders to ask questions, provide feedback, and receive timely answers—including public Q&A sessions, open office hours, or stakeholder listening forums for two-way communication and clarifications.
Publish all waiver policy changes with clear, plain-language at a 6-8th grade reading explanations and improve direct notice to participants and providers about changes
Establish a designated point of contact or hotline staffed with personnel trained in waiver-specific issues, separate from general eligibility call centers.
Ensure Real-Time Transparency in the CMS Review Process by publicly disclosing all waiver amendments and their status in real-time, as they happen. This includes:
Real-time Submission Disclosure: Immediately post the exact version of any waiver amendment as it is submitted to CMS.
Real-time Approval Disclosure: Immediately post the precise version of the waiver amendment, including any modifications or conditions, as it is officially approved by CMS.
Approval Timeline: Continuously provide the exact dates of submission and final approval for all amendments, to clearly demonstrate a commitment to a transparent review process.
This level of real-time, detailed disclosure is essential for stakeholders to actively monitor the evolution of waiver policies and hold the state accountable for changes impacting critical services.
II. Transition Plan Accuracy
Rectify Transition Plan Omissions: Amend Attachment #1: Transition Plan in both waiver drafts to accurately check all relevant boxes for proposed changes, as required by 42 CFR §441.301(f)(1)(v). This must include acknowledging:
Service reductions (e.g., 40-hour cap on relatives and LRIs)
Limits on AFC/ Structured Family Caregiving household count
Documentation burdens that affect provider participation and participant access to services
Include actual Transition Strategies: Provide comprehensive transition strategies for families affected by new limits or service eliminations, including clear plans for assisting them in finding and coordinating alternative care, without gaps in service.
III. Case Management
Reduce H&W Waiver case manager caseload caps from 65 to a range of 35–50 to reflect increased service complexity.
Reassign medically complex oversight (e.g., prior authorizations, nursing adequacy reviews) to qualified clinicians—not case managers.
Exclude legal/contractor oversight roles from case management duties (e.g., inspecting modifications, reviewing bids).
Require case managers to explain implications of Managed Care (e.g., Hoosier Care Connect) enrollment and support disenrollment when appropriate for waiver eligibility.
Provide standardized plain-language handouts for participant liability under self-directed models (e.g., workers’ comp, personal injury).
IV. Eligibility and Waitlist Access
Add an immediate eligibility pathway for “time is of the essence” medically fragile individuals to avoid institutionalization.
Eliminate or extend the 180-day waitlist enrollment deadline, or provide documented exceptions for systemic delays.
Formally recognize TEFRA 134 eligibility group and hospital LOC in the waiver application to align with current practice.
V. Provider Network Protections
Restore Appendix B-6 language protecting providers from claim denial due to state LOC processing delays or errors.
Permit providers to deliver services during LOC transition periods without financial penalty.
Offer transition support to providers who must implement new documentation and oversight systems.
VI. Service-Specific Recommendations
Adult Family Care (AFC)
Correct language referring to “institutional” setting in AFC section.
Simplify AFC documentation to avoid requiring daily narrative outcomes and multiple signatures.
Eliminate monthly plan of care submissions unless changes in condition or service are reported.
Home and Community Assistance (HCA)
Remove outcome-based documentation and quarterly progress reports for non-clinical HCA tasks.
Replace with task completion logs focused on health, safety, and cleanliness for IADL supports.
Skilled Respite
Eliminate outcome documentation and dual signatures for short-term skilled respite services.
Provide alternate methods for signature collection when individuals are non-verbal or sleeping.
Assisted Living
Reduce documentation and progress reporting to align with the residential, non-clinical nature of Assisted Living.
Behavior Management
Revise eligibility and provider qualifications to explicitly include older adults with dementia or chronic illness.
Allow geriatric behavioral specialists and LCSWs to provide services beyond TBI/developmental disability populations.
Integrated Health Care Coordination (IHCC)
Reduce documentation complexity and allow electronic summaries instead of narrative notes for every visit.
Adjust required visit frequency based on participant need.
Increase the IHCC monthly cap beyond 16 hours to accommodate participants with complex medical networks.
Equipment & Modifications
Allow waiver-funded modifications in newly purchased homes, particularly for disability-related moves. Clearly support waiver-funded initial accessibility modifications in newly purchased or moved-into homes, particularly for disability-related relocations.
Eliminate the lowest-bid requirement when vendor quality, speed, or safety are at risk. Instead, implement a "best value" bidding model that considers contractor qualifications, safety, experience, and timelines.
Expand repair/replacement support after accidents or medical regressions, especially when it results in loss of access.
Permit pre-installed adaptive features to be reimbursed if cost-effective and necessary.
Allow Single Bid Exceptions: Establish a clear process for approving single bids in areas with limited qualified vendors to prevent unnecessary delays and access denials.
Address Lifetime Caps for Evolving Needs: Re-evaluate lifetime caps ($20,000 for home modifications, $15,000 over 10 years for vehicle modifications) to allow for necessary second modifications following significant health decline, injury, or other major life changes, recognizing that needs evolve.
Cover Accident-Related Repairs: Reimburse for repair or replacement of essential modified equipment (home and vehicle) damaged in accidents or due to unexpected wear-and-tear, especially when it results in a total loss of access.
Include Therapeutic Equipment: Revise "ACTIVITIES NOT ALLOWED" to include medically necessary items with a direct remedial benefit that support exercise, therapy, and quality of life, such as adaptive tricycles and therapeutic pool lifts.
Reimburse Pre-installed Modifications: Allow reimbursement for cost-effective, medically necessary pre-installed adaptive features in vehicles to expand choice and reduce delays.
Attendant Care & SFC are recommendations addressed separately.
IX. General Recommendations
Eliminate unfunded mandates (e.g., documentation, RN visits) unless reimbursement is adjusted accordingly.
Commit to preserving community integration and family-based care, avoiding unnecessary institutional drift.
Remove Family Caregiver Exclusions: Reconsider the blanket exclusion of immediate family members and Legal Guardians from providing compensated assistance with these services when uniquely qualified and chosen by the individual.
"Time is of the Essence" Protocol: Establish immediate eligibility pathways for medically fragile individuals in "time is of the essence" situations to prevent unnecessary institutionalization and avoid prolonged hospitalizations.
Flexible Enrollment Deadline: Eliminate or significantly extend the rigid 180-day waitlist enrollment deadline, or provide clear, documented exceptions for systemic delays (e.g., provider shortages, complex discharge planning, Medicaid processing delays).
Formalize Eligibility Groups: Formally recognize the TEFRA 134 eligibility group and Hospital Level of Care (LOC) in the waiver application to ensure consistency with current practice and prevent confusion.
Restore Provider Protections: Reinsert Appendix B-6 language protecting providers from claim denial due to state Level of Care (LOC) processing delays or errors, ensuring they are compensated for services delivered during LOC transition periods.
Allow HCBS During Hospitalization: Align with federal flexibility (Section 1902(h)(1)) and other Indiana waivers (Family Supports, CIH) to allow HCBS to continue during short-term hospital stays. This ensures continuity of care, reduces trauma, and prevents forcing family caregivers to provide unpaid support in clinical settings.
Eliminate Unfunded Mandates Across Services: Cease imposing new administrative burdens (e.g., documentation, RN visits) across all services (e.g., ATTC, SFC, HCA, Assisted Living) unless reimbursement rates are adjusted accordingly to cover these added costs and liabilities. Unfunded mandates exacerbate provider shortages and accelerate caregiver burnout.
FSSA should clearly outline the procedures it uses to ensure that family members are properly and meaningfully informed of an applicant’s criminal background, as referenced on page 64 of the waiver amendment. Additionally, FSSA should specify the criteria or circumstances under which it determines that a limitation on employment or service provision is appropriate based on that background information.
The proposed changes in the December 2025 waiver drafts, while potentially offering some clarity, introduce significant policy shifts that threaten access, create inequities, and place families in impossible positions. They undermine federal mandates for person-centered care, community integration, and efficient service delivery. Limiting care in these ways does not promote health, safety, or independence—it simply pushes families toward institutional options or forces them to go without critical help. Families should not have to navigate a bureaucratic paper trail to prove what their child isn't receiving, just to unlock the supports they do need.
I respectfully urge Indiana to revise the December 2025 draft to align with CMS’s values of independence, choice, and dignity in care, ensuring that its waiver system truly supports individuals with disabilities to live full, integrated lives in their communities.
Respectfully submitted,
Julie McGill
Attendant Care
Public Comment: Missing and Overly Restrictive Supports in Attendant Care Definition
My comment critically examines the revised Attendant Care Services (ATTC) section within the December 2025 Health & Wellness Waiver draft. While appreciating any efforts toward clarity, this draft introduces new restrictions and imposes excessive documentation demands that collectively risk severely narrowing the scope of available care, undermining participant choice, and creating unsustainable burdens for caregivers. These changes are impractical, inequitable, and fundamentally inconsistent with promoting true independence and community integration for individuals with disabilities, as mandated by federal law and policy.
Specifically:
1. Missing Core Activities of Daily Living (ADL) Supports
The revised definition of ATTC narrowly focuses on direct, hands-on care, omitting supports essential for many waiver participants—particularly those with cognitive, sensory, or mobility impairments. These omissions contradict common practices in other Medicaid waivers and disregard CMS’s emphasis on individualized, person-centered services. Key missing supports include:
Cognitive Supports (e.g., redirection, cueing, and memory prompts) vital for individuals with dementia, intellectual disabilities or age-related cognitive decline.
Life Management and Organizational Support – Help with essential tasks such as sorting mail, managing bills, or facilitating communication, which allows individuals with cognitive or sensory limitations to maintain self-direction and independence.
Mobility Maintenance (e.g., range of motion and passive movement) necessary to preserve function and avoid decline for individuals with limited movement.
Community Integration Support, beyond just transportation—such as help attending social or recreational outings—required under the HCBS Settings Rule [42 CFR § 441.301(c)(4)(i)].
Routine Hygiene Around Medical Devices (e.g., ostomy/catheter site cleaning, emptying collection bags) which are non-skilled, daily hygiene needs—not medical services.
Feeding Tube Preparation, Setup & Cleaning - These non-skilled tasks can be safely performed by non-licensed caregivers, provided they are not administering the feed and no skilled nursing judgment is involved.
These are not "extras"—they are everyday supports that allow individuals to remain safe, independent, and truly integrated into their communities, aligning with the spirit of the Americans with Disabilities Act (ADA) and the Olmstead v. L.C. Supreme Court ruling which mandates services in the "most integrated setting appropriate."
2. Excessive Limits on Relatives and Legally Responsible Individuals (LRIs)
The draft imposes a rigid cap of 40 hours per week on services provided by legally responsible individuals (LRIs), relatives, or legal guardians—regardless of the individual’s assessed needs, family structure, or whether alternative providers are available. These limitations are especially harmful in rural areas and during staffing shortages, where non-relative providers are often scarce or unavailable. Rather than improving oversight or promoting quality, this cap denies needed support to families who are already acting as full-time caregivers, often without other options.
This policy conflicts with multiple federal mandates:
Participant choice of provider is a fundamental right under Section 1902(a)(23) of the Social Security Act, which guarantees that Medicaid beneficiaries may freely choose from any qualified provider willing to furnish services. Restricting access solely based on caregiver relationship violates this freedom when no other providers are realistically available.
The HCBS Settings Rule [42 CFR § 441.301(c)(4)(v)] requires that waiver participants have "choice of services and supports, and who provides them." Rigid caps on caregiver hours—especially when applied without regard to assessed need—undermine this right and limit the participant’s ability to direct their own care.
Olmstead v. L.C., 527 U.S. 581 (1999), affirms the right to receive services in the most integrated setting appropriate to the individual's needs. When family caregivers are artificially restricted and no replacement is available, the individual may be forced into institutional care, directly contradicting this Supreme Court ruling and the ADA’s integration mandate.
CMS guidance (CMCS Informational Bulletin, May 9, 2013) explicitly acknowledges the value of family caregivers in HCBS and urges states to support them through flexibility and person-centered planning—not through arbitrary restrictions. The bulletin highlights the need for “an individualized approach that takes into account the specific circumstances of the individual and the caregiver.”
Further compounding the issue, the proposal expands the definition of “relative” for the purpose of restriction—broadening who is counted under the cap without expanding who is eligible to provide care. This effectively shrinks the pool of reimbursable caregivers and penalizes households where multiple trusted family members are available to help.
Instead of advancing equity or quality, these restrictions:
Undermine participant-directed care models
Disproportionately affect families in underserved areas
Create financial hardship for those providing high levels of support
Risk service disruption and care gaps, especially when no outside providers can fill in
3. The "Hands-On Nutrition" Problem
The revised draft only allows “hands-on assistance with nutrition,” listing “meal planning and preparation.” But the phrase “hands-on” is undefined. Does this require physically guiding the person’s hands (i.e., “hand-over-hand” assistance)? Must the caregiver touch the food? Or does it exclude essential supports like:
Supervision: Ensuring safety around kitchen appliances or preventing choking hazards.
Verbal Cueing or Step-by-Step Prompting: Guiding an individual with cognitive impairments through the sequence of preparing a meal.
Coaching for Independence: Providing verbal instructions or encouragement that builds skills without direct physical contact.
These forms of support may not involve direct “hands-on” physical manipulation but are absolutely essential for an individual to eat safely, follow complex dietary needs, or maximize their independence in meal preparation. This narrow, overly literal interpretation contradicts the waiver’s stated commitment to a person-centered approach, which should include clear definitions that reflect the diverse support strategies individuals rely on to achieve functional outcomes.
4. Burdensome and Unrealistic Documentation Requirements = Barrier to Quality Care
This draft introduces significantly more stringent and detailed documentation requirements for Attendant Care providers that represent a profound and counterproductive burden on the entire care delivery system. These proposed rules risk critically undermining the very direct care they are meant to oversee, particularly in crucial home-based settings.
Mandatory Hourly Progress Notes Impose Unrealistic Demands and Detract from Direct Care: This draft imposes a rigid and impractical documentation requirement that mandates providers to complete a full set of “data elements for each hour services are rendered.” Specifically, each hourly entry must include:
o The time frame of service;
o A summary of services rendered, detailing the specific reimbursable activities or tasks performed and the outcomes realized;
o A description of any issue or circumstance concerning the individual; and
o A separate entry by each staff member providing direct care or supervision, for every hour of service provided.
This requirement is unprecedented—not only for non-clinical home-based services, but even compared to many clinical settings, where documentation is typically required every two hours or once per shift. It disregards the realities of in-home care, the limitations of available documentation platforms, and the continuous, routine nature of support. Mandating that providers document “outcomes realized” for every single task imposes a clinical, institutional model onto a flexible, community-based service. This approach diverts time from direct care, increases the risk of non-compliance, and ultimately undermines the person-centered intent of family and home-based caregiving.
A caregiver working a standard 10-hour shift would be expected to complete 10 separate, detailed progress notes daily, even when the care provided is consistent throughout the day (e.g., ongoing supervision for safety, hygiene support, or general assistance with mobility). This transforms essential caregiving into a time-consuming administrative task and diverts attention away from person-centered care and support, particularly in high-needs or fast-paced home environments.
Worsening this burden, Indiana’s current EVV practices often require caregivers to switch between service types mid-shift—for example, clocking out of Homemaker services to clock in separately for Attendant Care when providing support with ADLs. This forced segmentation of services ignores the fluid and overlapping nature of real-world caregiving, especially when support is provided by a single caregiver during a continuous visit. Homemaker services are not permitted to include assistance with ADLs, yet many caregivers are expected to toggle between task categories based on moment-to-moment needs—placing them at risk of accidental noncompliance if an ADL need arises during a shift scheduled as Homemaker.
Current EVV Platforms Cannot Support Required Documentation Standards:
Current EVV systems—including Indiana’s state-mandated platform, Sandata, and most approved third-party vendors—are not equipped to handle detailed, hourly narrative documentation. These platforms were developed primarily for timekeeping and service verification, not for clinical-style charting.
While Sandata allows switching between service types (e.g., Attendant Care and Homemaker), it does not reliably capture all components required for compliant documentation—forcing providers to supplement with paper records or maintain dual systems. Third-party platforms may offer more flexibility but often require shifts to be pre-programmed, limiting the ability to accurately reflect real-time changes in a participant’s needs or fluid movement between service types.
This misalignment between system functionality and documentation expectations creates operational strain, increases risk of noncompliance, and diverts attention from direct care. Documentation policies must be revised to match the capabilities of available EVV tools, support per-shift summary notes, and eliminate impractical expectations for real-time service category switching or hourly narratives.
Most EVV platforms function as point-in/time-out systems that:
Allow a caregiver to log start and end times of a shift,
Associate the shift with a pre-selected service code,
Require the visit to be scheduled in advance (sometimes to the exact time),
Allow limited free-text fields—usually only one comment box per shift or per visit.
They do NOT support:
Separate narrative entries for each individual hour,
Real-time documentation of multiple task types within a single visit,
Seamless switching between activities or goals mid-shift without closing and reopening separate records,
Dynamic activity capture for support that shifts organically throughout the day.
These limitations will cause:
Forced Non-Compliance and Increased Risk: When care involves frequent shifts between task types (e.g., ADLs and IADLs), maintaining separate, compliant hourly records becomes unmanageable. Caregivers are often forced to perform tasks outside the scheduled service category—leading to technical noncompliance and exposing both participants and providers to audit findings, denied claims, or liability.
Disrupted Continuity and Responsiveness of Care: Requiring real-time documentation every hour forces caregivers to pause mid-task or break their workflow, especially in dynamic, fast-paced home environments. This undermines the fluidity and responsiveness of care, discouraging person-centered support and limiting the ability to adapt to evolving needs.
Increased Burden and Unreliable Data: To meet these demands, providers must rely on manual workarounds like paper logs or secondary systems—introducing inefficiency, increasing the chance of errors, and producing fragmented documentation that is harder to audit or verify.
No Meaningful Oversight Gains: The administrative complexity added by these requirements offers little to no improvement in oversight or service quality. Instead, it burdens caregivers, overwhelms small agencies, and shifts focus away from care toward paperwork.
This disconnect creates serious operational and compliance risks:
Documentation errors are more likely under these conditions, increasing exposure to claim denials or audit findings due to formatting or omissions rather than actual service quality issues.
Providers and caregivers are forced into inefficient or duplicative workflows that are unsupported by the very systems mandated by the state for EVV compliance.
It imposes excessive administrative burdens that are out of proportion to the type of service being delivered, and disproportionately impacts small agencies and home-based caregivers—all while offering minimal benefit in terms of oversight, quality, or outcomes.
This hourly mandate fails to balance accountability with practicality. It introduces burdens that interfere with service delivery and increases the risk of care disruption—not because of a failure in care, but because of impractical paperwork and incompatible systems.
It significantly increases the risk of noncompliance when hands-on support is delivered under a service not intended to permit it, forcing caregivers to clock in and out of separate service codes throughout the day. This ignores the fluid, unpredictable nature of real-world caregiving, where safety, dignity, and timely assistance cannot be paused for administrative categorization.
Duplicative Quarterly Outcome: In addition to hourly notes, the draft now mandates that providers prepare and submit a comprehensive quarterly progress report to the case manager. This report requires a "brief summary of progress towards service plan outcomes," "challenges hindering progress towards service plan outcomes," and "A Positive event that occurred... that contributed to the individual’s good life". This requirement directly duplicates the established responsibilities of case managers, who already conduct regular reviews (at least every 90 days) to assess service plan implementation, individual outcomes, and overall progress, as detailed in Appendix D-2-a of the waiver. This redundant reporting adds a second, time-consuming layer of subjective documentation, placing an undue burden on providers, particularly family caregivers. It diverts their limited capacity and energy away from direct care without demonstrably improving the quality or efficiency of program oversight.
Collectively, these excessive and duplicative documentation demands will inevitably siphon critical time, energy, and resources away from actual caregiving. This administrative overload directly hinders compliance with the "health and welfare" assurance (42 CFR §441.302(a)) by reducing direct care time and leading to provider burnout. These requirements risk deterring otherwise capable caregivers, exacerbating workforce shortages, and ultimately creating new barriers to individuals receiving consistent, person-centered care. Such policies are contrary to CMS's stated goals for efficient quality improvement in HCBS, which seek to reduce unnecessary reporting burdens while ensuring effective oversight.
The proposed definition of “extraordinary care”—which limits eligibility to individuals requiring skilled medical support such as ventilators, tracheostomies, or Total Parenteral Nutrition (TPN)—is fundamentally misaligned with the purpose and scope of Attendant Care, a non-medical waiver service.
This standard is problematic for several reasons:
It imposes a skilled nursing threshold to access a non-clinical support service, contradicting the structure and intent of Indiana’s HCBS waiver.
It excludes individuals with high needs for supervision or assistance with ADLs (such as mobility, hygiene, or behavioral support), unless they also have a qualifying medical condition—even when those individuals require equal or greater caregiving effort.
It undermines caregiver access for families providing high levels of functional or behavioral support, especially legally responsible individuals who are already prohibited from performing skilled tasks under waiver rules.
The proposed definition directly conflicts with federal Medicaid regulations, including:
42 CFR § 441.301(c)(4)(iii): Waiver services must respond to the individual’s functional needs, not just medical diagnoses.
42 CFR § 441.301(c)(1): States must use a person-centered planning process that reflects each individual’s assessed needs—not an arbitrary medical threshold.
Olmstead v. L.C. (1999): Individuals with disabilities must receive services in the least restrictive environment, and policies that force institutionalization due to narrow service eligibility violate this standard.
42 CFR § 441.301(c)(4)(vi): The state must not discriminate based on service setting or model—yet the current proposal gives Structured Family Caregiving (SFC) a function-based definition of extraordinary care, while applying an inappropriate skilled-care threshold to Attendant Care.
This creates confusion and inequity, where two families with identical caregiving needs are treated differently based solely on which waiver service they use.
Indiana must revise the “extraordinary care” definition to reflect the non-medical nature of Attendant Care. A consistent, functional definition—aligned with the one already used in SFC—would protect access, uphold federal HCBS principles, and prevent discrimination.
Recommended definition:
“Extraordinary care” refers to non-medical support provided by a legally responsible individual or direct caregiver that exceeds typical care expectations due to the individual’s disability or condition. This care may include:
Hands-on assistance with ADLs
Supervision to prevent harm due to behavioral or cognitive conditions
Behavioral redirection or emotional regulation support
Coordination and transportation related to ongoing care needs
Support with IADLs necessary for independence (for adults 18+)
A skilled nursing diagnosis should not be required. This definition should apply uniformly to Attendant Care, PAC, and SFC services across all applicable waivers (H&W, TBI, and FS).
While the expansion of self-direction options is a welcome step towards empowering individuals with greater choice and control, the state has a fundamental responsibility to fully transparently outline and actively mitigate the profound legal, financial, and administrative burdens placed upon participants and their families who choose this model. Without comprehensive, explicit information and robust support, these often-hidden risks can create overwhelming challenges, deterring individuals from utilizing self-direction, or worse, exposing them to devastating personal consequences.
Unmitigated Participant Liability and Insufficient Guidance:
FSSA must immediately create and mandate the provision of a comprehensive, plain-language handout to all participants opting for self-directed services, thoroughly equipping case managers to explain its contents. This vital information, which is frequently inaccessible or poorly understood, must include:
Understanding Insurance & Personal Liability:
Clarify Worker's Compensation: The state must explicitly define how worker's compensation is handled within self-directed models. It needs to be clear whether the Fiscal Intermediary (FI) facilitates premium payments and filings, and precisely what legal and financial responsibilities, if any, remain with the participant as the employer of record to ensure continuous and sufficient coverage.
Outline Personal Liability Exposure: Case managers must clearly detail the severe personal liability risks if worker's compensation coverage lapses or is insufficient. This includes potential exposure to:
Medical costs for a caregiver injured on the job.
Lost wages and disability payments to an injured caregiver.
Legal penalties and fines from state labor boards for non-compliance.
Civil lawsuits from caregivers seeking damages.
Negligence and Home Safety Liability:
Case managers must actively walk participants through scenarios where their directives or home configuration could create danger for caregivers. Examples include unsafe transfer techniques, improperly stored equipment, or unaddressed hazards in the home environment.
It is critical to explain that standard negligence law applies (duty → breach → causation → damages). Participants need to know that failure to address or warn of known hazards in the home, or directing a caregiver to perform tasks unsafely, can result in significant lawsuit exposure for the individual.
By providing this level of explicit detail and scenario-based education, the state can empower individuals to make truly informed decisions about self-direction and equip them to proactively mitigate these serious, often overlooked, personal liabilities. This is a matter of both participant protection and fundamental equity in self-directed programs.
Restricting Participant Choice in Fiscal Intermediary (FI) Services:
Currently, participants are limited to a single, state-contracted FI. While this vendor may manage payroll, it lacks the flexibility, responsiveness, and personalization that true self-direction requires. This limitation conflicts with 42 CFR §431.51(b)(1), which guarantees the right to receive services from any qualified and willing Medicaid provider—including FIs.
Indiana should authorize a provider enrollment pathway for local FIs, allowing participants to choose among qualified vendors.
By offering a local FI alternative, Indiana can:
Uphold Participant Choice: Comply with 42 CFR §431.51(b)(1), guaranteeing freedom of choice by allowing access to any qualified and willing Medicaid provider. This empowers participants to select an FI that best meets their unique needs.
Accelerate Administrative Processing: Reduce delays by minimizing reliance on a single statewide vendor, streamlining workflows, and promoting system efficiency.
Foster Innovation and Quality: Encourage healthy competition among Fiscal Intermediaries to drive innovation, responsiveness, and continuous improvement.
Provide Responsive Administrative Support: Enable access to Fiscal Intermediaries (FIs) who offer immediate, hands-on assistance with payroll, taxes, and documentation, ensuring timely payments and significantly easing administrative burdens on families.
Deliver Localized and Equitable Support: Ensure FIs advance equity and inclusion by reflecting diverse languages, cultures, and local contexts—fostering trusted, relationship-based services and connecting participants to additional supports and resources through community-based providers.
Improve Oversight and Accountability: Increase system transparency and caregiver accountability through localized support and meaningful participant involvement in selecting service partners. real-time guidance from trusted community-based providers
Unrealistic Reporting Burdens for Self-Directing Participants:
Finally, given the new mandates for monthly and quarterly reports (as discussed in detail within the PAC and SFC sections), it is unclear how self-directing participants who serve as managing employers are expected to meet these highly demanding documentation requirements. These clinical-style, frequent reports add an immense, uncompensated administrative burden to participants, directly conflicting with the goal of reducing paperwork and ensuring sustainable care. This oversight must be carefully re-evaluated to ensure it is feasible and appropriate for individuals managing their own care, without compromising their ability to self-direct or risking their compliance.
7. Unjustified Denials and Shifting of Service Burden to Other Programs
The December 2025 Health & Wellness Waiver draft explicitly outlines "ACTIVITIES NOT ALLOWED" for Attendant Care services, which, while ostensibly aimed at preventing duplication, create significant barriers to accessing essential ATTC and unjustly shift the burden of care onto individuals and their families:
The draft requires children ages 3–22 to first use EPSDT and school-based services (FAPE/IDEA) before ATTC may be authorized, even when those systems do not meet personal care needs. EPSDT, defined under Social Security Act §§1905(a)(4)(B) and 1905(r), is primarily a medical screening and treatment benefit—not a substitute for daily living support during school hours.
The waiver also blocks ATTC unless families first exhaust all State Plan home health services or obtain a denial. But due to staffing shortages or lack of compatible providers, these services are often unavailable in practice. Requiring prior denial for unavailable services violates the individual’s “free choice of provider” (Social Security Act §1902(a)(23)) and delays or denies necessary support.
Critically, the draft bars ATTC from covering tasks that fall under nursing scope, even when those tasks (e.g., tube feeding setup, ostomy care, medication assistance) are low-risk and essential to community living. Yet Indiana regulations (410 IAC 17-9-19) and federal rules (42 CFR §440.70(c)(1), §484.60) prohibit nurses from performing these tasks in most community settings. This creates a “regulatory black hole” where no provider is allowed—or available—to meet the need, forcing families to do it alone or go without.
Finally, if written denials from schools or EPSDT are required before approving ATTC it will create an impossible burden of proof. Such documentation is rarely issued, and families without it may have no clear path to appeal—contradicting fair hearing protections under 42 CFR §431 Subpart E.
Together, these policies block access to waiver services, deny person-centered care, and fundamentally violate the HCBS Settings Rule (42 CFR §441.301(c)(4)-(5)) and the ADA’s community integration mandate. They must be revised to ensure waiver services are accessible based on need—not red tape.
Forcing Exhaustion of Entitlement Programs (EPSDT/FAPE/IDEA): The draft states that children ages 3 through 22 "must first utilize entitlement programs including... Medicaid and the Early Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, and free appropriate public education (FAPE) programs and resources available through a child’s school as mandated by the Individuals with Disabilities Education Act (IDEA)". It strictly prohibits payment for duplicated services.
Impact: By forcing reliance on EPSDT (a Medicaid mandated benefit under Social Security Act §1905(a)(4)(B) and §1905(r)) and school-based FAPE programs (mandated by IDEA for educational services), the state sets the stage for denying ATTC during crucial school hours. While coordination is vital, supports provided through schools are inherently educational in nature and often insufficient or inappropriate to meet a child's comprehensive daily living and personal care needs outside of the academic context. This places an unfair and unrealistic burden on families to fill these gaps during critical times, contradicting CMS guidance which clarifies that while EPSDT and waiver services can work in tandem, a child's enrollment in an HCBS waiver "cannot be used to deny, delay, or limit access to medically necessary services that are required to be available to all Medicaid-eligible children under federal EPSDT rules".
Unrealistic Exhaustion of State Plan Home Health Services: The waiver requires "demonstration that individual is using and has exhausted all available home health services under the state plan, or Medicaid State Plan prior authorization denial for home health services is required before waiver reimbursement is available through the Medicaid waiver for this service" for ATTC.
Impact: In practice, this presents an insurmountable barrier. Families frequently face challenges finding home health agencies with available staff, especially for complex cases, or their preferred, trusted caregiver is not a certified home health aide. This bureaucratic hurdle often results in significant, dangerous gaps in care, rather than actual service provision, despite documented need. It also infringes on the individual's fundamental "free choice of provider" (Social Security Act §1902(a)(23)), forcing them into an impossible choice between an unavailable service and an unmet need.
Creating an Unsafe "Care Gap" : The waiver explicitly states a prohibition: "Services used as a substitute for care provided by a registered nurse, licensed practical nurse, licensed physician, or other health professional".
Impact: This strict prohibition ignores the reality Indiana's and federal regulations (e.g., 410 IAC 17-9-19 & 410 IAC 17-14-1(a) & 42 CFR § 440.70(c)(1) & § 484.60) generally prohibit skilled nursing staff from providing support outside of the individual's primary residence (e.g., during community outings or school hours). This creates an unacceptable "care gap": ATTC caregivers are forbidden from assisting with these tasks, yet skilled nursing is legally restricted from providing this support in many community settings or simply unavailable for intermittent needs. This regulatory black hole forces caregivers to perform these vital tasks "off the clock," without compensation or proper oversight/training, simply to ensure the individual's immediate health and safety. It is fundamentally unfair and unsafe to deny Attendant Care for these critical needs by stating "nursing should take care of it" when nursing is, by policy or availability, prohibited from or unable to provide services in the very community settings individuals need to access. This policy inadvertently leads to necessary tasks being either unmet or performed without appropriate oversight, compromising both health and safety.
Increased Burden of Proof on Families: Requiring families to exhaust all other entitlement options before accessing waiver services creates an unnecessary and often insurmountable hurdle. Parents must provide written documentation that school systems or Medicaid EPSDT have denied or inadequately delivered services. This documentation process is confusing, inconsistent across districts, and delays access to urgently needed care. Denials based on “duplication of services” often come without a formal denial letter from the school or EPSDT. Without this, families may have no clear way to appeal. This creates a system where care is denied not based on the child’s needs, but on gaps in documentation beyond the family’s control. Appeal rights must be meaningful and accessible—even when another system is unresponsive.
These policies, in sum, do not foster independence or health; they establish unreasonable prerequisites and create regulatory traps that push individuals and families into impossible situations, forcing them to choose between uncompensated, potentially unsafe care, or unnecessary institutionalization, fundamentally undermining the principles of the HCBS Settings Rule (42 CFR §441.301(c)(4)-(5)).
Recommendations
I strongly recommend the state:
Restore and expand allowable Attendant Care activities to include the full range of ADLs and Instrumental Activities of Daily Living (IADLs) typically found in comprehensive personal care services.
o Guided community engagement and recreation access.
o Clarify the term “hands-on” nutrition to includes supervision, cueing, prompting, and verbal coaching—not just physical manipulation.
o Assistance with Bill Paying
o Assistance with accessing recreational or social programs.
o Assistance with Range of Motion Exercises / Passive Physical Activity
o Help with Correspondence, Money Management, or Bill Paying
o Providing verbal reminding, cueing, prompting, or step-by-step instructions for tasks
o Behavioral support through structured redirection,
o Monitoring for safety in cognitively impaired individuals.
o Assisting with the setup, troubleshooting, or proper use of specific adaptive technologies (e.g., screen readers, braille devices, talking appliances) that enable greater independence.
Add language about "as-needed" hours, split shifts, or support during caregiver emergencies. Federal regulations under the HCBS Settings Rule (42 CFR §441.301(c)(1)) require that services be based on the individual’s assessed needs and preferences, and structured to promote independence in the most integrated setting possible. That goal cannot be achieved with rigid hour-based structures that fail to account for real-life scheduling needs, fluctuations in care demands, and the unpredictable nature of family caregiving environments.
Allow paper-based documentation for caregivers without reliable internet or digital literacy, with agencies responsible for electronic entry if needed. This ensures access is not limited by technology barriers and supports equity for rural and older caregivers.
Eliminate the blanket 40-hour cap and allow participant needs, available staffing, and individualized person-centered planning to drive service authorizations. This is consistent with federal law, CMS guidance, and the principles of the HCBS Settings Rule.
Revise policies to ensure that Medicaid State Plan and school-based services are not prerequisites for waiver services when those services are unavailable, insufficient, or inappropriate to the individual’s person-centered plan or family's chosen caregiver. Instead, clarify that a family’s inability to obtain written denials from schools or EPSDT shall not be grounds for denial of ATTC services. A signed attestation or documentation of service inaccessibility should suffice. This aligns with the "most integrated setting" principle of Olmstead and the "participant choice" element of the Settings Rule (42 CFR §441.301(c)(4)(v)).
FSSA must create and require case managers to provide a comprehensive, plain-language handout detailing all the process of self-directed care along with their responsibilities and transparently outlining specific personal legal and financial risks inherent in self-directed care. This should include:
Clarifying Worker's Compensation: Explicitly define how worker's compensation is handled, clarifying the FI's facilitation role versus the participant's ultimate responsibility for coverage.
Outlining Personal Liability Exposure: Clearly detail risks such as medical costs, lost wages, legal penalties, and civil lawsuits if coverage is insufficient.
Addressing Negligence and Home Safety: Provide scenario-based education on negligence law and how participant directives or home conditions can create liability for caregivers.
Add a provider enrollment pathway for qualified local agencies to serve as approved Fiscal Intermediaries under the waiver to all allow participants a choice to select a local FI
Revise documentation standards to be genuinely reasonable, practical, and non-burdensome for all providers, ensuring administrative tasks do not inadvertently detract from direct, quality care, consistent with CMS's goals for efficient quality improvement.
Update documentation requirements to align with the functionality of current EVV platforms and the dynamic nature of home-based caregiving. Specifically, we recommend:
Allowing one concise shift note per visit instead of hourly narrative entries.
Removing requirements that force real-time switching between service types or hourly documentation for needs that shift during a visit.
Remove the universal requirement for monthly and quarterly provider outcome reports. Instead, allow case managers to request provider input only when needed (e.g., after major incidents or when reassessment is required).
Eliminate the requirement for caregivers to switch between Homemaker and Attendant Care billing codes in real time. For individuals with significant dependence who may need ADL assistance at any point, services should be exclusively authorized and billed under Attendant Care.
Modify the "extraordinary care" definition by:
Remove the skilled-nursing-based definition of “extraordinary care” from Attendant Care and PAC.
Replace it with a function-based definition aligned with person-centered planning requirements.
Ensure consistency across services (SFC, ATTC, PAC) and waivers (H&W, FSW, TBI) to avoid confusion and disparate treatment.
Explicitly consider high needs in the IDD and TBI populations, such as behavioral, cognitive, and functional dependencies, which are often more burdensome than skilled tasks.
The proposed changes do not enhance care quality or fiscal accountability—they instead restrict access, create inequities, and place families in impossible positions. The waiver must be person-centered, realistic, and supportive of integrated, home-based care—not a regulatory maze that drives people into institutions or unpaid labor. Limiting care in these ways does not promote health, safety, or independence—it simply pushes families toward institutional options or forces them to go without critical help. Families should not have to navigate a bureaucratic paper trail to prove what their child isn't receiving, just to unlock the supports they do need. I urge FSSA to revise the December 2025 draft to align with CMS’s values of independence, choice, and dignity in care.
Respectfully submitted,
Julie McGill
Structured Family Caregiving
Public Comment: Urgent Revisions Needed for Structured Family Caregiving
I am submitting this comment to highlight critical issues within the December 2025 waiver draft concerning the Structured Family Caregiving (SFC) service. While SFC is a vital family-centered service, the proposed changes introduce significant operational, financial, and safety risks that jeopardize its integrity and access for vulnerable Hoosiers. I want to urge the State to revise these policies to align with federal Home and Community-Based Services (HCBS) regulations and ensure the long-term sustainability and person-centered nature of SFC.
1. Clarify SFC as a Stipend-Based Program, Not Employment
The State must unequivocally define Structured Family Caregiving (SFC) as a stipend-based support model, distinct from traditional employment. Without this crucial clarification, provider agencies face severe, unfunded legal and financial exposure under federal and state labor laws, including the Fair Labor Standards Act (FLSA).
SFC compensates live-in family caregivers chosen by the participant for support within a shared home. These caregivers are not hired, trained, or scheduled by agencies in the manner required for employment classification.
To ensure compliance with federal HCBS rules and prevent misclassification, I am requesting the State to include explicit language confirming:
SFC caregiver payments are stipends, not wages, and are exempt from FLSA wage and hour requirements.
Provider agencies are not considered employers of SFC caregivers under state or federal law for compensation or liability purposes.
SFC caregivers function as participant-directed supports, consistent with 42 CFR § 441.301(c)(1)(vi), which prohibits overlap between care coordination and service provision.
Under CMS guidance and Appendix C of the 1915(c) Technical Guide, SFC caregivers—especially Legally Responsible Individuals (LRIs)—may be paid for support services without triggering employer-based requirements, provided appropriate safeguards are in place.
2. Unclear Respite Rules Create Financial and Safety Gaps
The December 2025 waiver draft allows for up to 15 days of respite per year under SFC but lacks critical operational, financial, and safety details.
Lack of Clarity on Stipend Continuity and Agency Billing: The waiver fails to specify if the principal caregiver's stipend ("pass-through") continues during respite. It's unclear if payment is paused, reduced, or maintained, or if agencies can bill and retain the full per diem when a substitute caregiver provides care. This ambiguity hinders financial planning and compliance for agencies and families.
Undefined Criteria for What Constitutes a “Respite Day”: Without defining what counts as a “day” of substitute care (e.g., calendar day, billable service day, minimum hours), providers cannot consistently apply limits, especially for partial or intermittent coverage.
Financial Infeasibility of Substitute Coverage: Providing 24-hour substitute care is financially unsustainable under the current per diem structure. For example, a Level 3 SFC per diem ($133.44) cannot cover a substitute caregiver earning $20/hour ($480/day), let alone agency oversight costs.
Risk to Participant Safety During Substitute Care: Many SFC participants have complex medical or behavioral needs. Most SFC agencies are non-medical Personal Service Agencies (PSAs) not equipped to manage these needs during principal caregiver absences. The waiver fails to address how non-clinical agencies can safely meet skilled or semi-skilled care needs during respite, raising serious concerns for participant health and safety.
3. Below-Minimum Wage Compensation for 24/7 Care
Even at the highest reimbursement tier (Level 3), a typical caregiver receives approximately $106.75/day, which breaks down to $4.45/hour for 24/7 responsibility. Even assuming 16 active care hours per day, the rate is $6.67/hour—significantly below Indiana's minimum wage of $7.25/hour.
This inadequate compensation is for work that often includes:
Complex ADL support
Behavioral management
Monitoring chronic health conditions
Logging detailed data entries every day
Despite 24/7 responsibility, SFC caregivers are not eligible for overtime pay, further devaluing their round-the-clock commitment. This mismatch directly contradicts federal HCBS guidance, risking a program that relies on family caregivers for institutional-level care while compensating them below minimum wage and demanding extensive administrative compliance.
4. Unreasonable Increase in Required Home Visits
The Transition Plan for Integrated Health Care Coordination (IHCC) in the December 2025 waiver draft makes an important clarification: that waiver-based care coordination is duplicative for PathWays enrollees because Managed Care Entities (MCEs) and Dual-Eligible Special Needs Plans (D-SNPs) already provide comparable supports. The state correctly states:
“The state is clarifying that Integrated Health Care Coordination (IHCC) is considered duplicative of MCE care coordination… FSSA will confirm the enrollee has an assigned care coordinator through their MCE/D-SNP.”
This same principle must apply to Structured Family Caregiving (SFC), particularly the requirement for quarterly RN oversight and monthly home visits—including twice-yearly RN visits—for individuals already receiving care coordination through MCEs or D-SNPs.
PathWays participants already benefit from:
MCE-assigned care coordinators responsible for health risk assessments, care plan updates, and service integration;
Interdisciplinary team involvement and person-centered care planning;
Routine medical oversight through primary care and, in many cases, home health services already monitored by licensed clinicians.
Imposing additional RN supervisory requirements under SFC is therefore:
Redundant, since clinical monitoring is already occurring under MCE or home health oversight;
Misaligned with the nature of SFC, which is a non-medical service intended to support ADLs, supervision, and community living—not skilled care;
Burdensome for provider agencies, especially when these requirements are layered on top of reduced rates, capped caregiver hours, and exhaustive documentation mandates.
Furthermore, requiring RN involvement in documenting daily changes in mood, diet, medical status, and other indicators shifts SFC away from its intended purpose—supporting caregiving in a home setting—and toward a quasi-clinical model that duplicates services MCEs are already obligated to manage.
If FSSA and CMS agree that IHCC is duplicative under PathWays, they must also recognize that SFC nursing oversight requirements represent a similar duplication of services and provider burden. Just as IHCC was deemed unnecessary for PathWays participants with active MCE care teams, SFC should be exempted from additional RN oversight for this population—particularly when no added value to outcomes or safety can be demonstrated.
The minimum of one home visit per month, with at least two per year by a licensed nurse (RN or LPN), is an excessive, redundant, and invasive burden that fundamentally misunderstands SFC's non-medical nature. This significantly shifts from the previous standard of typically two caregiver coach visits per quarter by non-clinical professionals.
Many SFC households already manage numerous existing oversight activities:
Quarterly case manager visits
Regular home health nurse visits (every 60 days)
Weekly therapy sessions
Weekly or monthly ABA team meetings
Frequent doctor appointments
This cumulative intrusion can make a family’s home feel more like a clinical facility than a private residence—undermining the very intent of the HCBS setting, which under 42 CFR § 441.301(c)(4) guarantees individuals the right to privacy, dignity, and autonomy.
Ironically, the proposed SFC oversight even exceeds Medicare-certified home health clinical expectations, which include:
Nursing supervisor visits every 60 days.
Use of telehealth when appropriate.
Flexible oversight driven by patient condition, not fixed quotas.
Unlike skilled home health care, Structured Family Caregiving is a non-medical support service, often delivered by Personal Service Agencies (PSAs) that are not licensed home health providers. The model is built around daily care from a live-in caregiver, not ongoing clinical supervision. Mandating nurse-led monthly visits reflects a fundamental misunderstanding of how this program works—clinically, operationally, and financially. The proposed changes shift the service away from its core intended purpose and compromise its core identity as a non-institutional, individualized, family-based model of care and cause additional issues:
Operational and Logistical Impossibility: Requiring licensed nurses (RNs or LPNs) to conduct monthly home visits creates a logistical barrier that many SFC agencies cannot overcome—especially in rural areas. Staffing shortages and long travel distances make it unrealistic to rely solely on clinical staff. Many agencies depend on trained, non-clinical caregiver coaches to provide effective oversight. With Indiana already facing widespread healthcare workforce shortages, this mandate is simply not sustainable to implement as written.
Financial Unsustainability for Agencies: SFC agencies typically retain as little as 20% of the daily per diem rate after passing approximately 80% to the family caregiver (e.g., only $26.69/day for a Level 3 participant at $133.44/day). Mandating monthly home visits—especially by licensed nurses—adds costs that far exceed what the agency retains, making this level of oversight financially unsustainable within such limited margins.
Punitive Effect on Caregiver Pay: If agencies are forced to fund these new oversight requirements from their already limited margins, they face an untenable financial burden. To stay afloat, many may be forced to reduce the pass-through rate to family caregivers—which the state allows to be as low as 60%. This creates a further imbalance in caregiver pay, devaluing the critical, often 24/7 care they provide for a fixed daily stipend that, when broken down hourly, is already very low. Rather than supporting caregivers, this policy effectively punishes them for the state’s increased administrative demands and undermines Indiana’s ability to sustain a stable, fairly compensated caregiving workforce.
It is unreasonable to demand increased oversight and professional staffing requirements without offering reimbursement adjustments or tiered administrative rates that realistically offset this added burden. The financial viability of SFC agencies is directly tied to their ability to fairly compensate caregivers and cover operational costs; policies that compromise this balance jeopardize the entire service.
5. Lack of Virtual Option is Inequitable and Disruptive
The implicit requirement for exclusively in-person home visits, particularly for increased oversight in Structured Family Caregiving, fundamentally disregards the realities of modern caregiving and creates avoidable hardships for vulnerable Hoosiers. The absence of any option for virtual home visits, even for non-physical elements of oversight or care management, is deeply problematic:
Compromising Health and Safety for Immunocompromised Individuals: For families managing individuals with compromised immune systems or other significant health vulnerabilities, mandating in-person visits for oversight purposes introduces an unnecessary and potentially severe infectious risk. This policy fails to prioritize the participant's direct health and welfare (42 CFR § 441.302(a)) by forcing exposure when safe, virtual alternatives for many oversight tasks could be utilized.
Exacerbating Logistical Burdens and Limiting Access: Families navigating complex schedules involving multiple therapy, medical, and educational appointments already face immense logistical demands. Forcing additional, mandatory in-person visits adds an unnecessary layer of complexity. For individuals residing in rural or transportation-limited areas, the absence of a virtual option creates significant barriers to receiving consistent oversight and maintaining program participation. This inequity in access can disproportionately affect individuals' ability to receive necessary care in the most integrated setting, undermining the spirit of the Americans with Disabilities Act (ADA) and the Olmstead v. L.C. mandate.
Undermining Participant Choice and Flexibility: Denying a virtual alternative, especially for aspects of oversight that do not require physical presence, limits participant choice in how services are managed and delivered. Person-centered planning (42 CFR § 441.301(c)(2)) and the HCBS Settings Rule (42 CFR § 441.301(c)(4)(v)) emphasize individual autonomy and flexibility in service delivery. An inflexible in-person only policy is outdated and fails to embrace modern solutions that could enhance accessibility without compromising quality.
Requiring additional in-person visits without offering a virtual alternative—especially for those who are immunocompromised or have complex schedules—is not only inequitable but potentially harmful. This policy fails to acknowledge the reality of modern caregiving for medically fragile or high-needs individuals, creating unnecessary barriers to essential home and community-based services.
6. In-Person Training
The draft states, “The principal caregiver must receive a minimum of eight (8) hours of in-person training on providing care to the participant.”
While training can be a valuable support, this requirement raises important concerns:
Timing of the Training Is Unclear: The draft does not specify when this training must occur—before services begin, within a grace period, or within the first year. How does it work if the patient/caregiver switch agencies mid-way through? What is the expectation?
“In-Person” Requirement Is a Barrier to Care: Requiring the full 8 hours to be completed in person—without any flexibility for virtual formats or self-paced modules—creates real access issues:
Many SFC caregivers are providing 24/7 support and cannot leave the home.
Families in rural areas or with limited transportation may face unreasonable travel burdens.
Some caregivers may themselves have disabilities, health concerns, or caregiving duties that make attending in-person sessions logistically or financially impossible.
Mandatory Training Devalues Existing Caregiver Experience and Competence: Many principal caregivers—especially legally responsible relatives—have years, even decades, of lived, hands-on experience providing complex, individualized support to the participant. Imposing a one-size-fits-all, blanket training requirement, regardless of an individual's prior skills, knowledge, or expertise, implies that this invaluable lived experience is inadequate. Forcing experienced caregivers to complete arbitrary training hours, with no direct regard for their existing background, is not supportive; it’s burdensome red tape that can feel both demeaning and demoralizing. This approach prioritizes policy compliance over real-world competence, adds unnecessary red tape, and risks undermining the very trust and partnership that the SFC model is supposed to promote.
Mandatory Training Blurs Employee/Caregiver Relationship:
The imposition of rigid, one-size-fits-all training requirements, particularly the 8-hour in-person mandate, fundamentally blurs the distinction between a stipend-based family caregiver and a traditional agency employee. This level of prescribed oversight and control risks triggering unintended legal and financial liabilities under federal labor laws, including the Fair Labor Standards Act (FLSA). It contradicts the participant-directed nature of SFC, where individuals or their families select and direct their caregivers. Such mandates transform caregivers into de facto agency employees without the corresponding protections or compensation, jeopardizing the program's sustainability and fair compensation for those providing essential, round-the-clock support.
If training is to be truly meaningful and person-centered (42 CFR § 441.301(c)(1)-(2)), it must be flexible, individualized, and designed to enhance—not duplicate or dismiss—the caregiver’s existing knowledge. Imposing one-size-fits-all training implies that this lived experience is inadequate. It prioritizes policy compliance over real-world competence. Otherwise, this requirement risks pushing capable families out of the program entirely.
7. Mandated Electronic-Only Documentation
The waiver draft requires that all Structured Family Caregiving (SFC) documentation be submitted exclusively in an electronic format, stating:
“The SFC provider agency must capture daily notes... in an electronic format.”
This rigid digital-only requirement, with no paper-based alternative, presents significant equity and accessibility issues that contradict core HCBS values and risk excluding otherwise qualified caregivers.
This inflexible policy is not only impractical—it directly undermines service access and compliance by imposing avoidable burdens on caregivers who:
Live in rural areas with poor or unreliable internet coverage.
Lack access to devices like smartphones, tablets, or dependable computers.
Struggle with digital literacy, especially older adults or kin caregivers, for whom technology-related stress can interfere with quality caregiving.
SFC services are provided in the caregiver’s private home—not in a staffed agency setting. A one-size-fits-all electronic mandate ignores this context and disconnects from the realities of how care is delivered. It burdens caregivers based on their technological access, not their caregiving ability.
This policy conflicts with the HCBS Settings Rule (42 CFR § 441.301(c)(4)(v)), which requires that services support individual choice, dignity, and accessibility. Imposing documentation methods that are not feasible for all households undermines these protections. Additionally, the Uniform Electronic Transactions Act (IC 26-2-8) affirms the legal validity of paper records unless specifically excluded, supporting flexibility in documentation formats.
The waiver’s rigid approach also contradicts CMS guidance encouraging states to reduce administrative burden and support workforce participation through flexible documentation practices in home- and community-based services.
Without a paper-based option, caregivers may be unjustly excluded or penalized based on technology access—placing services at risk and ultimately jeopardizing the individual’s ability to remain in their home.
8. Excessive Daily Notes: An Unreasonable and Unsustainable Documentation Burden
The December 2025 waiver revision significantly expands the scope of daily documentation required from principal caregivers in Structured Family Caregiving (SFC). What was once focused on meaningful updates or reportable events has now shifted into a clinical-style mandate, requiring caregivers to log extensive data every single day, including all of the following required fields:
The individual’s physical health status
The individual’s mental health status
Sleep patterns
Dietary intake
Medication use*
*This raises serious legal concerns. Documenting daily medication use may violate state and federal limits on what unlicensed, non-medical caregivers are permitted to do. For example, under Indiana Code 16-27-1 and 455 IAC 2, Personal Services Agencies may only assist with self-administration and are not allowed to monitor or administer medications. Yet this daily requirement implies a level of medical oversight incompatible with a non-medical setting.
Social activity and participation in community-based activities
Behavior observations
Any other notable or reportable events
Additionally, agencies are expected to use these daily notes to monitor the individual’s health, assess caregiver needs, and proactively detect changes to report to medical providers. This turns daily caregiving into a data collection exercise—closely resembling facility-level recordkeeping.
These expectations are not only excessive—they are incompatible with the nature of family caregiving in the home. SFC is meant to provide care in a natural, non-institutional environment, yet this mandate imports the burdens of institutional documentation into private households.
This directly conflicts with:
42 CFR § 441.301(c)(4): which affirms individuals’ rights to dignity, autonomy, and services in the least restrictive environment
CMS SMDL #13-007: which urges states to reduce administrative burdens to protect provider sustainability and workforce capacity
The Olmstead v. L.C. decision: which prohibits policy barriers that pressure individuals toward institutionalization or reduce access to HCBS
For many caregivers—especially legally responsible family members—this daily documentation requirement is not just unrealistic, it’s unjustifiable. It creates an impossible choice: write a detailed narrative every day, or fall out of compliance. It diverts attention from supporting their loved ones, forces families into paperwork routines to meet documentation metrics that do not meaningfully improve service quality and they were never trained for. It risks pushing qualified, long-standing caregivers out of the program entirely.
Provider agencies, too, are overburdened—required to review and archive vast quantities of daily records, consuming time and resources that would be better spent on coaching, support, and crisis prevention. This level of micromanagement is not only unsustainable—it risks driving out experienced Structured Family Care Agencies and collapsing the very model designed to keep people in their homes.
Caregivers are forced to choose between supporting their loved one or staying compliant with metrics that do not meaningfully improve care quality.
Provider agencies are also burdened with reviewing and archiving mountains of daily records—creating a bottleneck that wastes resources better spent on real oversight and support. This level of micromanagement is unsustainable and risks driving experienced caregivers and providers out of the system entirely.
This is an uncompensated increase in workload for family caregivers who already provide round-the-clock care.
The administrative burden detracts from care and increases risk for burnout.
Agencies must invest more in training, supervising, and reviewing detailed logs—without corresponding funding.
The person-centered flexibility promised by CMS is undermined by these rigid, time-intensive tasks.
9. Duplicative Quarterly Provider Progress Reports: Wasteful, Burdensome, and Detrimental to Quality Care
The draft introduces a new and unfunded mandate requiring Structured Family Caregiving (SFC) provider agencies to submit detailed quarterly narrative progress reports to case managers. These reports must include:
“Progress toward service plan outcomes”
“Barriers to progress”
“Positive life events”
“Service dates, caregiver ratios, and provider information”
While framed as routine, this mandate represents a substantial policy shift. The July 2025 waiver application—reviewed only months earlier—did not require such provider reports and made clear that case managers, not providers, are responsible for outcome tracking. Specifically, the July draft tasks case managers with:
“Monitoring the individual’s progress from need identification to goal achievement”
“Collaborating with providers to ensure services align with preferences”
“Adjusting service plans based on evolving needs”
There was no standing requirement for case managers to “request and review quarterly progress reports from providers”—let alone a mandate for providers to independently generate narrative assessments of outcomes, barriers, and life events.
This change creates misplaced responsibilities and role confusion by shifting core care coordination responsibilities to SFC providers—many of whom are non-clinical Personal Services Agencies—despite their lack of training or authorization to perform this level of analysis under Indiana regulations.
This directly violates:
42 CFR § 441.301(c)(1)(vi) – which requires that care coordination activities do not include the provision of direct services and must be conducted by qualified professionals.
Expecting SFC providers to produce narrative outcome evaluations blurs the distinction between service delivery and care coordination. These responsibilities fall squarely within the domain of the case manager, who is already required by the waiver to:
Conduct quarterly PCISP monitoring
Document outcome progress and barriers
Perform 90-day reassessments to revise goals and maintain HCBS eligibility
Coordinate and ensure service effectiveness
Request and review provider reports if applicable—not as a default requirement
The “if applicable” qualifier clearly signals that narrative reporting by providers should be rare and situational, not routine or universal.
This change also creates a redundancy across multiple oversight systems potentially causing a triple duplication of oversight already conducted elsewhere:
Case Managers: Already responsible for tracking service effectiveness, goal progress, and needed adjustments.
Medicaid State Plan Home Health Services: For individuals with complex needs receiving nursing services, licensed home health agencies will be documenting clinical conditions, goal progress, and changes in health.
Other Systems (e.g., therapy or school): May already address barriers, goals, and outcomes for participants with overlapping services.
Requiring SFC providers to replicate this information adds no clinical or programmatic value, yet imposes significant burden. This reporting mandate conflicts with multiple federal and state laws and guidance:
42 CFR § 441.301(c)(1)(vi) – prohibits overlap between service delivery and care coordination
42 CFR § 441.301(c)(4) (HCBS Settings Rule) – protects individual dignity and autonomy, which is undermined by excessive documentation that leads to caregiver stress and burnout
CMS Waiver Technical Guide (Appendix H) – emphasizes for continuous, data-driven quality improvement without prescribing excessive reporting burdens.
CMS SMDL #13-007 – cautions against unnecessary administrative complexity in HCBS programs
Social Security Act § 1902(a)(30)(A) – requires Medicaid services to be delivered with efficiency, economy, and quality
Indiana Administrative Code (455 IAC 2) – limits Personal Services Agency documentation to task performance, attendance, and health monitoring, not narrative progress tracking or barrier analysis
Nowhere in Indiana code or HCBS standards is it permissible to require both the provider and the case manager to submit comprehensive quarterly narratives covering the same goals. This provision is not just duplicative—it is wasteful, misaligned, and harmful to quality care:
Uncompensated Labor: The new mandate forces providers and caregivers to spend significant unpaid time preparing subjective narratives, rather than focusing on essential care tasks.
No Evidence of Value: There is no data suggesting these reports improve outcomes. Instead, they increase the risk of:
Inconsistency across records
Documentation errors
Caregiver fatigue and burnout
Misaligned Role Expectations: Asking non-clinical PSAs to function as quasi-case managers or behavioral analysts oversteps both training and regulatory boundaries and muddies accountability.
Systemic Inefficiency: Requiring three entities to document similar progress data is the definition of inefficiency—and contradicts CMS’s own technical guidance and the principles of the Social Security Act.
10. Clarification Needed on LOS Assessment Form Retention
The waiver currently states: “The SFC provider agency must retain a copy of the completed AFC/SFC LOS Assessment Form.” However, this is misleading. Provider agencies do not complete the LOS Assessment Form—this is the responsibility of Maximus and the waiver case manager. In many cases, providers do not have access to this document unless it is explicitly shared by the case manager. Agencies do not always receive copies unless shared.
Recommendations for Policy Revisions:
To preserve the viability and person-centered intent of Structured Family Caregiving (SFC), I strongly recommend the following revisions:
Clarify SFC as a Stipend-Based Program – Not Employment
Affirm that provider agencies are not considered employers of SFC caregivers under state or federal law for compensation or liability purposes, aligning with the model where caregivers are chosen by the participant for support in a shared home environment.
Define SFC payments as stipends, not wages, explicitly stating that principal caregivers are not subject to Fair Labor Standards Act (FLSA) wage and hour requirements (e.g., minimum wage, overtime). This is crucial to protect provider agencies from unintended legal and financial exposure under labor laws.
Clarify that SFC Caregivers are not subject to payroll tax withholding or employment classification requirements to prevent unintended FLSA or unemployment insurance liability for provider agencies.
Clearly state that Tuberculosis (TB) screening is not required for Structured Family Caregiving (SFC). SFC caregivers serve as participant-designated supports—not traditional direct care employees—and therefore fall outside the scope of TB screening requirements outlined for employee-based services. This interpretation is supported by Bulletin BT2024134, which excludes SFC from the list of services requiring TB testing, and was reaffirmed by IAHHC on October 31, 2024. Publicly clarifying this distinction will eliminate confusion and promote consistent, accurate policy enforcement.
Reasonable Oversight Visit Policy
Mandating routine monthly nursing visits within Structured Family Caregiving (SFC)—a non-medical, caregiver-driven support model—represents a significant overreach and creates redundancy with existing Medicaid services. If a participant’s medical complexity warrants ongoing licensed nursing oversight, that individual should be assessed for and transitioned to IHCC or State Plan Home Health, where such clinical services are appropriately scoped, regulated, and reimbursed.
Embedding these nursing requirements into SFC—without corresponding funding or service alignment—violates the intent of the waiver and places undue burden on Personal Services Agencies (PSAs) that are neither licensed nor equipped to deliver skilled nursing. This ensures appropriate role alignment, regulatory compliance, and protection of the SFC model’s viability. As such, I recommend:
Reduce Mandated Visit Frequency: Decrease the minimum mandated frequency of home visits to once quarterly for routine oversight, unless a higher frequency is clearly justified based on assessed individual needs within the person-centered service plan. This acknowledges the substantial cumulative oversight many SFC households already experience through case manager contacts, nursing supervision via Home Health, MCE coordinators and other therapy/behavioral teams.
Remove Redundant Clinical Mandates: Eliminate all routine RN/LPN visit requirements for SFC providers. This clinical oversight is redundant for participants already receiving care coordination through Managed Care Entities (MCEs) or State Plan Home Health. Furthermore, mandating RN/LPN involvement in a non-medical service like SFC is misaligned with its purpose and financially unsustainable, as licensed nurses cannot provide clinical advice under a non-clinical provider agency.
Authorize Virtual Oversight: Allow flexibility for virtual or telehealth oversight visits when physical presence is not medically necessary and is consented to by the participant/caregiver. This enhances accessibility, reduces burdens for immunocompromised individuals or rural families, and aligns with modern care delivery.
Reserve RN/LPN involvement for individuals receiving Home Health or Integrated Health Care Coordination (IHCC) services under the waiver—services specifically designed for skilled medical oversight and care coordination.
Training Requirements
Clearly specify when the 8-hour training must be completed (e.g., within the 1st year of enrollment), and
Outline how training applies when the participant moves to a new agency when the caregiver has already completed their training under another provider.
Permit training to be completed via virtual, hybrid, or self-paced online modules to accommodate caregivers who cannot leave home.
Recognize Existing Competence: Create an equivalency waiver for experienced caregivers (e.g., those with years of experience, or holding nursing/HHA/CNA credentials), allowing them to demonstrate competence through testing or prior documentation instead of requiring redundant in-person training. This respects lived experience and avoids unnecessary burdens.
Ensure training requirements reflect 42 CFR § 441.301(c)(1)-(2): by providing flexible service planning and avoiding unnecessary administrative barriers.
Documentation Flexibility and Streamlining
Permit paper-based documentation options for caregivers who lack reliable internet or digital literacy, with agencies responsible for electronic archiving (in compliance with Indiana Code § 26-2-8).
Accept documentation through checklists, dropdowns, or structured forms instead of requiring open-ended narratives.
Remove or re-word the documentation requirement for medication assistance. Specify that caregivers may document assistance with self-administration (e.g., reminders, opening containers), but not tasks that constitute monitoring or administering medications beyond their legal scope.
Limit daily documentation to key health or behavioral changes and revise documentation standards to be truly reasonable and practical.
Reverse the reduction in SFC household limit from four to three individuals.
Adjust the daily per diem rate to account for the increased administrative responsibilities and workload placed on both caregivers and provider agencies under the proposed documentation requirements.
Clarify that SFC provider agencies are not responsible for retaining AFC/SFC Level of Support (LOS) Assessment Forms unless a copy is explicitly provided by the case manager or Maximus. If the state expects providers to retain such forms, it must ensure they are consistently shared. Otherwise, the retention requirement should be removed, as SFC providers do not generate these assessments and may not have access to them.
Eliminate Duplicative Reporting Requirements
Align oversight expectations with provider type, ensuring that provider documentation supports actual service delivery.
Reaffirm that outcome tracking and care coordination are case manager functions—not provider responsibilities. Align waiver text with 42 CFR § 441.301(c)(1)(vi), which mandates that care coordination must not overlap with service provision and must be performed by qualified professionals.
Remove the universal requirement for quarterly narrative reports by SFC provider agencies. Instead, retain the current standard that allows case managers to request provider input “if applicable”—for instance, in cases of a significant incident, transition of care, or newly identified barrier.
Replace narrative progress reports with simple, optional updates from providers, limited to: Major incidents or health changes, Transitions (e.g., hospitalization), Notable life events (if voluntarily disclosed by the caregiver), Requests for reassessment or case manager follow-up.
Avoid duplication across oversight systems by explicitly exempt SFC providers from submitting outcome progress reports if the individual:
Receives oversight through Pathways Program
State Plan Home Health, or
Has an active behavioral, therapy, or educational team documenting progress toward similar goals.
If any reporting is retained, align it with Indiana PSA scope and CMS standards:
i. Limit to factual, non-narrative entries such as attendance, health observations, and service delivery notes.
ii. Use structured checklists or dropdown forms—not open-text narrative reports.
iii. If narrative reporting is required, the State should:
Provide an additional per-member-per-month (PMPM) administrative payment to compensate for the increased burden, and
Supply a standardized, waiver-defined template with streamlined fields and an estimated completion time (e.g., no more than 15 minutes per report)
Respite Clarity and Structure
Clarify whether agencies may bill and retain the full per diem on days when a substitute caregiver provides care.
List allowable duties (e.g., coordination, on-call status, remote support) that would qualify the caregiver to retain partial or full stipend if they are not physically present.
Define what constitutes a “respite day” (e.g., calendar day, service day, or minimum hour threshold).
Allow agencies to bill hourly for substitute care if per diem is insufficient to cover 24-hour coverage costs.
Include explicit language that non-medical SFC agencies are not liable for providing substitute care beyond their licensure or training.
Ensure Personal Service Agencies are not responsible for overseeing skilled care during respite periods but can help caregivers learn how to access skilled respite.
Compliance with Federal HCBS Rules
Align policies with Social Security Act § 1902(a)(30)(A) requiring Medicaid services to be delivered with efficiency and economy.
Ensure oversight and documentation expectations honor 42 CFR § 441.301(c)(4), protecting privacy, dignity, and home-based autonomy.
Avoid administrative requirements that conflict with the Americans with Disabilities Act (ADA) and the Olmstead v. L.C. integration mandate.
The SFC model under FSW has long been overly burdensome, requiring monthly in-home visits and nurse oversight regardless of the individual’s medical needs. Instead of revisiting and reducing these requirements to align with public comments requesting less intrusive models used in other waivers (H&W, TBI, PathWays), the state is attempting to expand this overly surveilled model system-wide.
Changes must be made to the proposal to preserve Structured Family Caregiving (SFC) as a sustainable, accessible, and genuinely person-centered alternative to institutional care in Indiana. CMS guidance makes clear that states must align administrative requirements with provider qualifications and reimbursement levels, avoid unnecessary duplication, and design oversight systems that enhance—not hinder—service delivery.
Overburdening providers with excessive clinical mandates and administrative tasks that do not reflect medical necessity threatens both compliance and the viability of this essential HCBS program.
I respectfully urge Indiana to revise these policies to align with federal HCBS regulations and uphold the integrity, dignity, and long-term sustainability of home- and community-based care.
Thank you,
Julie McGill
Pre-Generated Templates - Just Click to Send
🔹 Main concerns:
Too many required home visits, including by a nurse
No option for virtual check-ins
8-hour in-person training with no flexibility
Mandatory digital-only paperwork, leaving some caregivers behind
Increased daily documentation, even about medications
Agencies must write quarterly reports duplicating case manager work
Risk of caregiver stipend cuts due to added unfunded responsibilities
Ask the state to reduce red tape, keep caregiver pay strong, and support flexibility in how families meet program requirements.
“Extraordinary Care” Definition Is Too Medical
Redefines extraordinary care to mean only skilled nursing tasks (like ventilators/trachs) — cutting off support for people who need hands-on or supervisory help.
🔹 Affects: Attendant Care (ATTC) & PAC
🔹 Excludes: People with high behavioral, cognitive, or functional needs
🔹 Suggests: A fair, function-based definition
New rules would limit which relatives can be paid caregivers and cap their hours at 40 per week, even when more care is needed.
Expands the definition of relative to include aunts, uncles, cousins, and in-laws — then limits what care they can provide
Makes it harder for families who rely on trusted extended relatives
Introduces these changes without properly listing them in the public summary
Could force families to choose between trusted care and access to service
Written like a caregiver talking directly to the state
Focuses on just two main issues:
→ The hourly progress note requirement
→ The 40-hour cap on family caregivers
Easy to read, emotional, and relatable
Best for caregivers who want to share their voice but don’t want to dive into technical language
Blends caregiver experience with broader system concerns
Highlights how the changes will:
→ Increase caregiver burnout
→ Leave out key daily living supports
→ Limit family choice and create care gaps
More detailed than Option 1 but still accessible
Great for people who want to explain why the policy just won’t work
Most technical and detailed version
Cites federal law and HCBS regulations (like Olmstead, ADA, and CMS rules)
Discusses deeper concerns like:
→ Documentation burdens tied to EVV systems
→ Violation of participant choice
→ Gaps in allowed Attendant Care services
→ Structural barriers caused by requiring denials from schools or State Plan services
Ideal for advocates, providers, or policy-savvy caregivers
Information about the December 2025 Waiver Draft Proposals
Email your comments to:
Pathways: backhome.indiana@fssa.in.gov
Health & Wellness Waiver/TBI/CIH/Family Supports Waiver:
ddrswaivernoticecomment@fssa.in.gov
Mention which waiver you are commenting on in the subject line!