Public Comment on Family Supports & CIH Waivers

8/1/2025

I am writing to express significant concerns regarding the proposed changes to Indiana’s Family Supports Waiver (FSW), as outlined in the December 2025 draft. While the waiver reflects some efforts to strengthen oversight and alignment with federal policy, several provisions—especially when contrasted with the July 2025 version—introduce excessive administrative burdens, reduce flexibility for families, and create potential legal and operational conflicts with federal Medicaid regulations and civil rights law.

These changes, taken together, represent a shift away from person-centered planning and equitable access, and toward a more institutionalized, compliance-driven model that risks reducing both quality and availability of services. Many of the new provisions appear to conflict with federal requirements outlined in 42 CFR §441.301, the Americans with Disabilities Act (ADA), and CMS’s own 1915(c) Technical Guide.

The following concerns highlight how the current draft would negatively affect individuals receiving care, their families, and the provider network tasked with delivering these essential services.

List of Concerns:

A. Lack of Transparency and 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, but even then it was not announced to stakeholders until July 21. This timeline provided almost no opportunity for meaningful public 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.

B. 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.

C. Limited Access for Individuals Transitioning from Other Waivers

The December 2025 Family Supports Waiver draft again reserves only 100 slots for individuals losing Nursing Facility Level of Care (NFLOC) under the Health & Wellness Waiver, despite concerns raised in the previous waiver cycle. There is no evidence that this is sufficient for the large number of individuals expected to lose NFLOC eligibility on the H&W Waiver.

Without a clear justification or adjustment mechanism in Appendix B-3, this fixed cap risks delaying or denying access to eligible individuals who meet ICF/IID level of care—placing Indiana at odds with 42 CFR §441.302 and the Olmstead v. L.C. mandate to avoid unnecessary institutionalization.

The CIH Waiver illogically limits eligibility exclusively to Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) Level of Care (LOC), especially when the Family Supports Waiver (FSW) correctly allows both ICF/IID and Nursing Facility Level of Care (NFLOC). This creates a critical service gap: individuals with significant NFLOC needs who exceed the FSW's support capacity are left without a suitable waiver option, risking institutionalization. Indiana must expand the CIH Waiver eligibility to include individuals with NFLOC when their assessed needs require it. This change is crucial to ensure consistency, prevent unnecessary institutionalization, and comply with 42 CFR §441.301 (person-centered care) and the Olmstead v. L.C. decision (integration mandate).

D. Extraordinary Care Definition

The use of a skilled nursing-based definition of “extraordinary care” within Participant Assistance and Care (PAC) under the Family Supports Waiver (FSW) is fundamentally misaligned with the intent of the service and the needs of the individuals it serves. The FSW is designed for individuals who meet the ICF/IID level of care as defined in 42 CFR § 440.150, which primarily includes people with developmental disabilities, such as autism, Down syndrome, cerebral palsy, and intellectual disabilities.

Most individuals in this population:

• Do not have medical devices like ventilators, tracheostomies, or TPN;

• Do require high levels of daily support, including total assistance with ADLs, behavioral supervision, and frequent redirection or cueing;

• Are not medically complex in the traditional sense, but are often functionally and cognitively dependent on caregivers to remain safely in the community.

If the PAC service is limited to those who meet a high-acuity medical standard—such as requiring skilled nursing tasks—it effectively excludes the entire intended population. The vast majority of individuals who rely on PAC would be disqualified under this definition, despite needing extraordinary levels of daily care and supervision to avoid institutionalization.

These needs may include:

• Full physical assistance with toileting, bathing, transferring, dressing, and eating;

• 1:1 supervision to prevent self-harm, elopement, or aggression;

• Constant redirection, emotional regulation support, or cueing for basic tasks;

• Assistance with navigating daily routines, medical appointments, and community outings.

The proposed definition dismisses these critical supports simply because they are not classified as “skilled medical”, despite being both intensive and essential. This is not consistent with the purpose of PAC and violates the principles of person-centered planning under 42 CFR § 441.301, which require that services be based on functional need, not on the presence or absence of specific medical procedures.

In effect, the definition implies: “Unless the person has a ventilator or trach, their care is not extraordinary.” This is not only inaccurate—it is harmful and devalues the lived experience of individuals with intellectual and developmental disabilities and their families. It renders a vital waiver support functionally inaccessible and invites inconsistent interpretation, ultimately placing individuals at increased risk of crisis or institutional placement.

E. Music and Recreational Therapy: Arbitrary Caps and Excessive Documentation

The December 2025 draft imposes arbitrary caps and burdensome requirements on both Recreational Therapy and Music Therapy services. These proposals directly conflict with established federal Medicaid principles, including person-centered planning, ensuring access based on assessed need, and the foundational goals of Home and Community-Based Services (HCBS) regulations (42 CFR §441.301 and §441.302).

1. Arbitrary 6-Hour Monthly Caps Violate Assessed Need and Undermine Cost-Effectiveness Principles:
   Both services are capped at an arbitrary limit of six hours per month, irrespective of an individual's unique assessed need. This directly violates 42 CFR §441.301(c)(1), which mandates that service amounts must be based on a comprehensive assessment of functional and clinical needs, as well as individual preferences. Imposing a fixed hourly limit without justification undermines the individualized nature of person-centered planning.

2. Furthermore, this arbitrary cap is unnecessary for overall cost containment and can even be counterproductive to the waiver's financial objectives. The primary mechanism for ensuring fiscal responsibility in a 1915(c) waiver is the overall waiver budget limit, specifically the average per capita expenditures rule under 42 CFR § 441.302(e), which requires that the total cost for waiver participants does not exceed what would have been spent in institutional settings. Micro-managing individual service hours through arbitrary caps, while the overall waiver remains within its cost-neutrality limits, does not enhance fiscal prudence but rather:

   • Limits access to potentially critical supports: For individuals who would significantly benefit from more frequent or intensive therapeutic engagement to achieve their person-centered goals and enhance community participation, this cap creates an unnecessary barrier to full integration.

   • Risks violating the Olmstead v. L.C. mandate: By limiting access to services deemed necessary to live in the community, it may inadvertently push individuals toward more restrictive and costlier institutional settings if their needs are not adequately met.

   • Undermines the "necessary and appropriate" standard: An arbitrary limit presumes that any amount beyond the cap is inherently unnecessary, directly contradicting the principle that services should be tailored to an individual's assessed needs to achieve their purpose effectively.

3. Excessive Clinical Documentation Burden for Habilitative Services:
   Providers are expected to produce quarterly narrative reports, detailed system uploads, and—in the case of Music Therapy—session-by-session clinical charting. These documentation requirements are disproportionate and overly clinical for services fundamentally designated as habilitative supports. Such demands:

   • Impose undue administrative burden: This diverts valuable provider time and resources away from direct interaction and therapeutic engagement with individuals, forcing it into extensive paperwork.

   • Discourage provider participation: Specialized recreational and music therapists, especially those in smaller practices or those focused on community-based, non-clinical models, may be deterred from participating in the waiver due to the overwhelming and misaligned documentation expectations. This limits choice and access to qualified professionals for beneficiaries.

   • Conflict with HCBS principles: CMS emphasizes reducing administrative burden and aligning documentation with the nature of HCBS, which are designed to be flexible and person-centered, not to replicate the rigid charting of a clinical or institutional setting.

4. Mischaracterization of Purpose and Underutilization of Value:
   Recreational and Music Therapy are fundamentally habilitative services designed to support social engagement, emotional regulation, cognitive development, and functional life skills. Their value lies in promoting well-being, skill acquisition, and community participation in integrated, natural settings. Forcing them into a rigid, narrowly defined “medical” framework:

   • Dilutes their true value: It misunderstands their role in enhancing quality of life and fostering independence through engaging, non-traditional therapeutic approaches.

   • Restricts flexibility and innovation: It may limit how these services can be adapted to individual preferences and goals within a community context.

   • Creates inappropriate oversight: Applying clinical charting standards to habilitative services is often medically inappropriate, especially for individuals whose needs are related to maintaining skills or preventing regression rather than achieving "progress" in a strictly clinical sense. This can lead to misinterpretations of outcomes and unnecessary interventions.

By imposing arbitrary caps, excessive documentation, and mischaracterizing these vital habilitative services, the proposed draft creates unnecessary barriers to access and quality, ultimately hindering individuals' ability to achieve their full potential for community integration and personal well-being, contrary to both the spirit and specific requirements of federal HCBS regulations.

F.  PAC Documentation and Oversight Requirements

Instead of enhancing flexibility and preserving natural supports, the proposed changes to PAC services introduce clinical-style oversight, excessive administrative burden, and restrictions that reduce access and equity—especially for family caregivers and small providers.

Most notably, the draft introduces hourly documentation requirements so excessive they surpass those used in many clinical settings. Every hour of PAC must now include The requirement for "detailed task summary," "outcome notes," and "progress toward outcomes and goals" on an hourly basis, along with dual signatures start and end times, service location, two caregiver/participant signatures, and credential verification. This level of micromanagement is unrealistic for natural supports, small agencies, and family caregivers—and it comes with no increase in reimbursement to reflect the new burden.

Instead of supporting caregivers, this framework will force agencies and families to divert time and resources away from direct care and into paperwork. The result is predictable: less time for care, lower caregiver wages, fewer participating providers, and diminished service quality.

PAC is designated under CMS service category 08: Home-Based Services, specifically as both 08010 (home-based habilitation) and 08030 (personal care). These are non-clinical, non-medical support services designed to assist with daily living, promote safety, and support basic skill maintenance within the home and community setting. This draft requires PAC providers to have a licensed nurse (RN or LPN) on staff or on-call—a drastic departure from the original intent of PAC as a non-medical service. Imposing licensed nursing oversight on non-medical services  far exceed what is appropriate for its federal classification and creates serious consequences:

• Drives up costs for small providers and family-run agencies.

• Adds an unnecessary clinical layer that deters providers and complicates service delivery.

Even more concerning, this change directly conflicts with the principle of self-direction. How can families be expected to self-direct PAC services if they are required to hire or contract with a nurse? This requirement undermines the intent of PAC, discourages flexibility and self-direction, and risks excluding capable caregivers who already provide high-quality personal support.

The inclusion of nursing requirements without medical necessity documentation may violate both CMS policy and the HCBS Settings Rule, which prohibits institutional features and unnecessary service barriers in community-based care (42 CFR §441.301(c)(4)).  

Finally, PAC remains one of the few services restricted to hourly billing. For families and providers coordinating care efficiently, PAC should be billed in 15-minute increments, like Attendant Care, to reduce service fragmentation and support flexible use. It is also unclear what documentation is required to support reimbursement for “participating on the IST for the development or revision of the PCISP.”

G. Structured Family Caregiving (SFC)

The Structured Family Caregiving (SFC) model under the Family Supports Waiver (FSW) has long imposed a burdensome oversight structure, requiring monthly in-home visits and nurse supervision regardless of the individual’s medical needs. Rather than aligning SFC with less intrusive, more flexible models used under the Health & Wellness, TBI, or PathWays waivers, the December 2025 draft proposes to extend this highly regulated approach system-wide—shifting Indiana further from person-centered, least-restrictive care.

These existing and expanded provisions introduce serious operational, financial, and safety challenges that jeopardize the long-term sustainability and accessibility of SFC for Hoosiers who rely on it. The State must revise these policies to meet the intent of federal HCBS regulations and preserve SFC as a viable, community-based support option.

1. Stipend Model Not Clearly Defined, Risking Employment Misclassification

The waiver fails to explicitly define SFC as a stipend-based support model, distinct from traditional employment. This ambiguity leaves provider agencies exposed to significant financial and legal risk under federal and state labor laws, including the Fair Labor Standards Act (FLSA). Because SFC caregivers are selected by the participant to provide support in a shared living arrangement—and are not hired, trained, or scheduled by agencies—they should not be classified as employees.

Without clear waiver language, agencies risk being held responsible for minimum wage, overtime, and payroll taxes for caregivers who function more like participant-directed supports. This directly violates 42 CFR § 441.301(c)(1)(vi), which prohibits overlap between service coordination and service delivery.

2. Lack of Clarity on Respite Creates Financial and Operational Risk

The draft permits up to 15 days of respite annually under SFC, but provides no guidance on key issues:

• • • Whether the principal caregiver’s stipend continues during respite

    • What constitutes a “respite day”

    • How agencies are expected to fund 24-hour replacement care under the flat SFC per diem (e.g., $133.44/day at Level 3 vs. $480/day for a $20/hr caregiver)

Most SFC providers are non-medical PSAs and are not equipped to manage complex care during respite. Without clear standards and reimbursement mechanisms, this policy invites confusion and compromises safety.

3. Below-Minimum Compensation for High-Intensity, 24/7 Care

At Level 3, caregivers receive $106.75 per day—equating to just $4.45/hour for 24-hour care, or $6.67/hour assuming 16 active caregiving hours. This pay level is significantly below Indiana’s minimum wage of $7.25/hour and does not reflect the demanding nature of SFC work, which includes assistance with ADLs, behavioral support, chronic condition monitoring, and daily documentation. This compensation structure contradicts HCBS program expectations and risks dependence on underpaid, overburdened caregivers for institutional-level care.

4. Redundant Home Visits and RN Oversight for a Non-Medical Service

The requirement for monthly home visits—including two annual RN or LPN visits—is misaligned with the non-clinical nature of SFC. It duplicates oversight by MCEs and home health agencies, imposes staffing burdens on providers lacking in-house nursing staff, and creates unnecessary costs. The clinical nature of this oversight transforms SFC into something it was never intended to be: a regulated, facility-like care model delivered in a family home.

Rather than adopting this model as a standard across waivers, Indiana should revise the FSW version to comply with CMS guidance on non-duplicative, least-restrictive, and person-centered care (42 CFR § 441.301(c)(1) and (4)).

5. No Virtual Option for Oversight Undermines Accessibility

Requiring all oversight visits to be conducted in-person places undue hardship on immunocompromised individuals and families in rural or transportation-limited areas. This inflexible model increases risk and reduces access—violating the intent of 42 CFR § 441.302(a), the ADA, and Olmstead v. L.C. It also diminishes participant choice, in direct contradiction to 42 CFR § 441.301(c)(2) and (c)(4)(v).

6. Inflexible Training Requirement Disregards Experience

The mandate for eight hours of in-person training for all principal caregivers fails to account for caregivers providing 24/7 support, those in rural locations, or individuals with their own disabilities. It devalues caregivers' existing lived experience—particularly that of legally responsible relatives—and further blurs the line between stipend-based support and employment, risking additional FLSA liability.

7. Electronic-Only Documentation Excludes Caregivers Without Access

Requiring all documentation to be submitted electronically—without a paper option—excludes caregivers in rural areas, those without internet access or appropriate devices, and those with limited digital literacy. This creates an artificial and unnecessary barrier to participation, violating equity principles under the HCBS Settings Rule and Indiana Code § 26-2-8 (Uniform Electronic Transactions Act).

8. Misaligned Documentation Format for Daily-Rate Model

The draft introduces language suggesting documentation of “units of service rendered,” which is fundamentally incompatible with SFC’s per diem structure. Documentation should confirm only that a full day of care was delivered. Applying unit-based or clinical-style expectations signals a misunderstanding of SFC’s design as a shared-living support—not a shift-based service or medical intervention.

9. Excessive Daily Documentation Requirements

Daily logs now require extensive tracking of physical and mental health status, sleep, dietary intake, medications, social activity, and behavior. For non-licensed family caregivers, documenting medication use raises legal and ethical concerns, as they may only assist with self-administration (Indiana Code 16-27-1 and 455 IAC 2). This overregulation adds uncompensated workload, increases burnout risk, and contradicts the flexibility and dignity intended by 42 CFR § 441.301(c)(4) and CMS SMDL #13-007.

10. New Quarterly Provider Reports Create Role Confusion

Requiring agencies to submit quarterly narrative progress reports duplicates case manager responsibilities and violates 42 CFR § 441.301(c)(1)(vi), which prohibits combining service coordination and delivery. Many SFC providers are non-clinical and unqualified to evaluate service outcomes. The mandate adds uncompensated administrative burden and reduces direct care time, while conflicting with Social Security Act § 1902(a)(30)(A) and 455 IAC 2.

11. Infeasible LOS Form Retention Rule

The draft states that SFC provider agencies must retain a copy of the AFC/SFC Level of Support Assessment Form, but providers do not complete or routinely receive this form—it is managed by Maximus and the waiver case manager. This requirement should be removed or clarified, as it is currently unenforceable.

H. Elimination of Intensive Behavioral Intervention (IBI)

The removal of IBI as a service under the FSW reflects a deeper systemic failure. IBI was effectively priced out of reach for most, then eliminated entirely before access could be equitably expanded. This decision was not due to a lack of need but a lack of investment. Commenters previously urged the state to fund IBI outside the cap; instead, the state acknowledged the concern, promised future consideration, and then removed the service without offering a meaningful alternative. Eliminating a clinically intensive service that was largely inaccessible does not resolve the underlying need—it merely removes the state’s obligation to address it.

I. Behavior Support Services

The changes to Behavior Support Services in the December 2025 draft create too many restrictions and make it harder for people to get the help they need when they need it. Although the updated language talks about quality of life and person-centered goals, the way the service is set up does not match how support actually works in real life.

• • Only one kind of help per month: The draft says providers can only bill for one type of support each month (like consultation, an FBA, or ongoing support). But in real life, people often need more than one kind of help at the same time—especially during a crisis or big life change.  Preventing access to necessary supports based solely on billing category undermines timely, responsive care and contradicts the foundational principles of individualized service delivery.

  • Tight limits on hours: There are strict yearly limits on how many hours a person can get for each type of service (like 20 hours for an FBA or 36 for consultation). These caps may prevent individuals from receiving adequate support throughout the year, particularly those with complex behavioral needs or those experiencing regression, trauma, or major life transitions. The rigid structure also limits the provider’s ability to proactively support individuals and their teams when additional guidance is needed.

  • Too much paperwork: Providers must now complete detailed forms, obtain multiple signatures, and submit recurring reports, regardless of whether circumstances have changed. These administrative tasks consume significant time and resources, particularly for small providers, without clear evidence of improved outcomes. This shift prioritizes compliance over quality and creates barriers to retaining qualified behavioral professionals in community-based roles.

Behavioral support should be built around the individual—not a billing structure. If these proposed restrictions remain unchanged, they will reduce provider participation, delay timely interventions, and increase the likelihood of unmet behavioral health needs. This approach undermines person-centered planning and directly conflicts with the federal HCBS requirements outlined in 42 CFR §441.301(c)(1) and (c)(4). Families will face greater difficulty finding qualified professionals, and the system will become less responsive to those who need support the most, when they need it most.

J. Facility-Based Support Services: A Discredited and Harmful Model

The Facility-Based Support Services model, though technically available, is effectively unusable in practice—likely due to poor design, underfunding, and fundamental misalignment with HCBS principles

• • A 1:16 staffing ratio, which is unsafe for participants who need hands-on ADL or medication support.

  • Excessive documentation requirements, including daily logs, multiple signatures, and quarterly reports, which discourage participation by small and community-based providers.

  • No reimbursement for skill-building in the community or for transportation, limiting access to meaningful activities.

  • A reimbursement rate of only $2.51/hour, which is wholly insufficient to pay qualified staff or meet basic standards of quality and safety.

K. Day Habilitation: Undermining Community Inclusion and Adding Burden

The proposed changes to Day Habilitation appear to increase oversight but actually undermine person-centered care, discourage community inclusion, and create unnecessary administrative burdens for providers and families. 

Daily logs, multiple signatures, and quarterly reports tracking staffing ratios and even “positive life events” turn habilitation into a paperwork exercise. These documentation demands reduce time for direct engagement and disproportionately burden small providers without improving actual outcomes.

Even more concerning is the exclusion of natural, real-world activities like shopping, banking, and errands—even when they align with an individual’s goals. These are some of the most effective ways to foster independence and community integration. Removing them strips the service of its most valuable teaching tools.

Compounding the problem, providers are prohibited from billing for basic participation costs like entry fees or tickets. This shifts financial responsibility to families, creating inequities and deterring participation—especially for lower-income individuals.

Requiring every activity to be pre-written into the PCISP further restricts flexibility. It prevents participants from trying new things, adjusting to their interests, or making spontaneous choices—undermining person-centered planning and natural autonomy.

Instead of supporting engagement, these changes emphasize compliance, restrict opportunities, and disconnect Day Habilitation from real life. The waiver should be revised to reduce administrative burden, restore support for authentic community-based activities, and allow flexibility that reflects the lived experience of the people it serves.

L. Workplace Assistance

While While the intent behind Workplace Assistance—to support individuals with disabilities in retaining competitive community employment—is commendable, the current waiver definition introduces critical limitations and operational barriers that undermine its effectiveness.

The definition rigidly restricts reimbursable support to personal care tasks only (e.g., assistance with meals, hygiene, toileting, and medication cues), explicitly excluding any support tied to job task completion, communication, emotional regulation, or social navigation. This excludes a wide range of real-world support needs that directly affect employment retention.

Many individuals with disabilities require help interpreting social cues, managing work-related anxiety, adjusting to sensory environments, or navigating coworker interactions. These supports are not clinical, but they are essential to maintaining employment—especially for individuals with autism, mental health conditions, or cognitive disabilities. The waiver fails to reflect this reality.

The waiver claims that Workplace Assistance exists to "support retention of paid employment," yet it prohibits nearly every practical activity necessary to achieve that goal. Specifically, providers may not be reimbursed for:

• • Observation or situational monitoring,

  • Job stabilization or on-site support coaching,

  • Communication with the employer,

  • Natural support facilitation or relationship building,

  • Behavioral strategy implementation or job site adaptation.

This results in a service definition that functionally prevents retention efforts, especially for those with higher support needs who benefit most from these job-sustaining strategies.

The requirement that Workplace Assistance be billed in full-hour increments introduces serious inefficiencies. Many individuals need only brief, intermittent support (e.g., 15–30 minutes of assistance during break time, mealtimes, or after a triggering event). Under the current model:

• • Providers must bill for a full hour, even if only a few minutes are needed,

  • Families and self-directed employers may underutilize the service to avoid waste,

  • Individuals are disincentivized from requesting episodic help due to rigid billing structures.

This one-size-fits-all billing model wastes resources, limits flexibility, and makes the service inaccessible for many who would benefit from short bursts of targeted support. CMS has consistently encouraged flexible, needs-based service design; this model does the opposite.

Despite the narrow scope of service delivery, the waiver imposes documentation requirements more suited to habilitation or clinical services. Providers must submit:

• • Daily records of “units of service rendered”,

  • Detailed quarterly progress reports with summaries of outcomes, challenges, and positive life events.

This high-volume documentation expectation diverts staff time away from individualized support and toward compliance paperwork. For a service meant to be episodic and individualized, this burden is disproportionate and counterproductive, reducing both service quality and provider retention.

Workplace Assistance is restricted to a 1:1 staffing ratio, even

• • On-call or intermittent job coaching,

  • Peer-assisted strategies or natural support augmentation.

This rigidity increases cost without improving outcomes and creates an artificial barrier to scalable, person-centered employment support models

M. Extended Services: Barriers to Employment Success

While supporting competitive employment is vital, the proposed Extended Services model in the December 2025 waivers is fundamentally flawed. Its rules impose overly burdensome documentation and restrictive group sizes. Crucially, it fails to address transportation barriers and excludes vital transitional work experiences like internships. Moreover, ambiguous self-employment language risks limiting opportunities. These combined flaws will severely hinder access for individuals, deter essential providers, and ultimately undermine the very goal of successful, integrated employment.

N. Prevocational Services – Excessive Reporting Burden

The draft introduces high-volume documentation for prevocational services, even though these are designed as habilitative and transitional supports. This discourages provider participation and shifts attention away from skill-building and engagement.

 O. Overly Fragmented Services: Counterproductive to Person-Centered Care

A critical and overarching concern within Indiana's Family Supports Waiver (FSW) is the excessive separation and narrow definition of services, particularly those related to employment, habilitation, and daily living supports. While some level of service differentiation is necessary, the current structure creates artificial distinctions that are demonstrably counterproductive to the waiver’s core goals of promoting independence, community integration, and person-centered planning.

This fragmentation undermines the holistic nature of care and forces complex individual needs into rigid, predefined service categories. For example, while Career Exploration and Planning, Prevocational Services, Workplace Assistance, and Extended Services are administratively distinct, they often overlap in practice. As a result, the waiver’s design leads to the following systemic challenges:

1. Increased Administrative Burden: Each narrowly defined service comes with its own billing codes, documentation requirements, and provider qualifications. This “siloed” structure creates unnecessary complexity for providers, case managers, and families, diverting valuable time and resources away from direct support. The result is a system where compliance takes precedence over care, and families face greater difficulty navigating supports that should be streamlined.

2. Fragmentation and Gaps in Care: Real-life needs are dynamic and often span multiple service areas. When support must be delivered across multiple rigid service definitions—such as combining job coaching with hygiene or community participation with skill development—providers are limited in their ability to bill appropriately. This results in service gaps, fragmented delivery, and inconsistent outcomes that could otherwise be addressed with a more integrated approach.

3. Barriers to Community Integration and Employment: Restrictive definitions of services often prohibit natural, real-world activities fundamental to building independence. For example, limiting Workplace Assistance to personal care tasks excludes important on-the-job supports, and excluding goal-related community activities like shopping or banking from Day Habilitation undermines life skills development. These limitations prioritize rigid administrative frameworks over individualized outcomes.

4. Deterrence of Qualified Providers:  The complexity of navigating such a fragmented service structure can deter smaller, innovative, or highly specialized providers from participating in the waiver. This limits choice and access, particularly in rural or underserved areas, and stifles the emergence of flexible models of support.

CMS guidance under 42 CFR §441.301(c)(1) and (c)(4) calls for services that are person-centered, flexible, and designed to facilitate access to community life. The fragmented structure of Indiana’s FSW conflicts with these expectations, creating inefficiencies and barriers that compromise both the experience of individuals and the viability of the provider network.

We strongly urge the State to consolidate and broaden service definitions to better reflect real-world needs, streamline administrative processes, and promote truly integrated, person-centered supports.

P. Home/Vehicle Modifications & Specialized Equipment

The requirement for two itemized bids creates access barriers in areas with limited vendors which even in a large city, there may only be 1 option. In practice, this results in delays, reduced provider participation, and higher long-term costs. Restricting selection to the lowest bid also risks poor-quality outcomes when providers with less experience are chosen solely due to price. Many other states have moved to a “best value” bidding model, which allows consideration of contractor qualifications, timelines, references, and prior experience with accessibility modifications to ensure safe, durable results.

A related equity issue arises when individuals purchase or move into new homes that require initial accessibility modifications. The current waiver framework does not clearly support modifications in newly acquired properties, which often forces families to try slightly improve an inaccessible home or absorb the full cost of adapting a new one. As a result, families are left trying to “make it work” in homes that were never designed to meet the individual’s needs—struggling up stairs, navigating narrow bathrooms, or sleeping in living rooms—when a safer, more suitable option could involve adding a bedroom, converting a garage into a first-floor living space, or building a more accessible home altogether.

Additional restrictions also undermine the long-term effectiveness of this service:

• • Second modifications are not supported, even after major life changes such as health decline, household transitions, or aging caregivers.

  • Accident-related repair or replacement costs are excluded, despite the fact that many individuals rely on modified homes and vehicles as their primary means of safe functioning and transportation. 

  • Pre-installed modifications in vehicles are not reimbursed, even when they offer a more cost-effective and immediate solution.

  • Therapeutic equipment such as lifts to safely access pools or spas, and adaptive bicycles or tricycles—is excluded under the current waiver, limiting opportunities for exercise, physical therapy, and increased quality of life.

Q. Respite

Requiring detailed summaries of specific tasks and outcomes for each unit of respite care is not only unnecessary—it is fundamentally misaligned with the core purpose of the service. Respite is intended to provide temporary relief to caregivers, not to achieve habilitative or outcome-based goals. Imposing outcome documentation requirements on respite care transforms it into something it is not, creates unnecessary administrative burden, and may deter providers from offering this critical support. CMS has consistently recognized that respite is a caregiver support, not a skill-building or therapeutic service.

Additionally, the FSW explicitly excludes HHAs from providing respite, a critical inconsistency. Given that the H&W Waiver, serving a medically complex population, allows HHAs for respite, it is even more imperative for the FSW—which supports individuals with intellectual and developmental disabilities (I/DD) who often have significant and complex medical needs—to permit this provider type.

Allowing HHAs to provide respite in the FSW would expand access to qualified professionals, reduce caregiver burden, and ensure that individuals with I/DD receive the medically-informed support they often require, preventing unnecessary strain on families and promoting continuity of care. This change is essential for equitable access and high-quality, person-centered support.

R. Wellness Coordination: Overly Restrictive and Duplicative Service Design

While Wellness Coordination aims to address critical medical needs, its current design in the December 2025 draft is overly restrictive, creates unnecessary duplication, and adds administrative burdens, compromising effective health coordination for individuals.

1. Arbitrary Access Barriers Through Health Score Thresholds: The rigid requirement for a "health score of 5 or higher" to access Wellness Coordination is an overly restrictive numerical cut-off. This inflexible threshold may deny crucial RN/LPN coordination to individuals whose nuanced or fluctuating medical needs genuinely warrant this support, despite a lower score. This undermines person-centered assessment and risks adverse health outcomes or preventable institutionalization.

2. Inflexible Delivery and Administrative Burden: The waiver mandates rigid face-to-face visit frequencies without allowing for more flexible, person-centered approaches like telehealth. This creates unnecessary burdens for individuals and nursing professionals. Additionally, the requirement for detailed quarterly narrative progress reports (including subjective elements like "Positive event...good life") is disproportionate for a medical coordination service, diverting valuable nursing time from direct care to duplicative administrative tasks that often overlap with case manager responsibilities.

S. Case Management Caseload Language

While the waiver states that caseloads must average 45 individuals per full-time case manager, it fails to establish a firm maximum per individual. Without a hard cap, agencies may concentrate large caseloads on specific staff, leading to diminished service quality, documentation backlogs, and staff burnout—especially when vacancies or turnover strain capacity.

This concern is compounded by the increasingly complex scope of case manager responsibilities introduced in this waiver draft. While we support the inclusion of conflict-free case management and clearer expectations for advocacy and collaboration, these improvements are overshadowed by the expansion of duties into areas far beyond case management’s traditional and licensed role.

1. Caseload Management Must Reflect Role Complexity

Even at an average caseload of 45, the demands placed on case managers are excessive when accounting for their expanded oversight responsibilities, which now include:

• • • Verifying compliance with service-specific documentation for up to 15–20 different waiver services

    • Confirming functional need alignment with authorized services and levels of reimbursement

    • Monitoring Person-Centered Service Plans for consistency with EVV entries, progress notes, and nursing visit logs

    • Reviewing provider-submitted quarterly reports, including narrative summaries for SFC, therapy, behavioral, and employment services

2. Remove Clinical Oversight Responsibilities from Case Managers

As in the H&W Waiver, this draft places several responsibilities on case managers that fall outside the scope of their licensure or training. These include:

• • • Interpreting nursing assessments or medication administration notes

    • Assessing adequacy of skilled or unskilled supports under SFC and Attendant Care

    • Evaluating behavior support plans, positive behavior outcomes, or barriers to employment

These are clinical judgments best handled by licensed professionals (e.g., nurses, behaviorists), not by case managers. Assigning such duties increases the risk of misinterpretation, delays in care adjustments, and systemic liability.

3. Limit Legal, Financial, and Technical Oversight to Appropriate Roles

The waiver requires case managers to:

• • • Sign off on home modification installations

    • Verify vendor invoices and bid documents

    • Monitor resolution of provider disputes, including employment documentation and environmental risk assessments

These functions are more appropriate for inspectors, financial auditors, or waiver specialists—not case managers. Holding them accountable for these tasks places undue burden on non-clinical staff and risks errors in domains outside their certification.

4. Require Informed Risk Disclosure for Self-Directed Services

Participants who choose to self-direct services must receive:

• • • Plain-language risk disclosures about employer liability, worker’s compensation, and potential legal exposure

    • Written documentation of what protections are or are not offered through the Fiscal Intermediary

    • Scenario-based handouts that outline what happens if insurance lapses, a worker is injured, or unsafe conditions are reported

True informed consent requires clarity, not fine print. This must be built into case manager procedures and oversight duties.

T. Unfunded Mandates: Increased Burden Without Corresponding Resources

A critical overarching concern across the December 2025 Family Supports Waiver (FSW) draft is the imposition of significant new oversight and administrative burdens without any corresponding increase in funding or administrative support for provider agencies and family caregivers. This unsustainable approach represents an unfunded mandate that directly threatens the stability and capacity of Indiana's Home and Community-Based Services (HCBS) system.

Providers and family caregivers are now expected to:

• Do more: Take on expanded roles, as seen in the increased clinical and administrative responsibilities placed on Structured Family Caregiving (SFC) providers and case managers.

• Document more: Adhere to highly detailed, often hourly or daily, clinical-style documentation requirements for non-clinical services like Participant Assistance and Care (PAC) and SFC.

• Report more: Generate new, duplicative narrative reports (e.g., quarterly progress reports for SFC agencies) that often replicate existing case management oversight.

This substantial increase in workload and complexity comes with no commensurate increase in reimbursement rates or allocation of resources for infrastructure, training, or additional staffing. This creates an untenable financial strain, particularly for small and family-run agencies, and places an unfair burden on dedicated family caregivers who are often already undercompensated.

This policy oversight is counterproductive to the goals of a robust HCBS system and directly conflicts with CMS guidance that emphasizes:

• • Imposing unfunded mandates risks driving experienced and dedicated providers, including family caregivers, out of the system, exacerbating existing workforce shortages and limiting access to essential services for individuals with disabilities.

  • Requiring providers to absorb significant new administrative costs without compensation undermines the economic viability of service delivery, potentially leading to reduced quality of care or service unavailability.

  • While oversight is necessary, imposing disproportionate and unfunded burdens can lead to provider non-compliance or withdrawal, ultimately hindering the state's ability to ensure program integrity and deliver services effectively.

To ensure the long-term viability and quality of Indiana’s HCBS system, all new administrative or oversight requirements must be accompanied by appropriate adjustments to reimbursement rates or dedicated funding for the necessary infrastructure and staffing.

U. Make All FSW Materials Plain Language

The Family Supports Waiver draft requires plain language for Service Plans—but this provision is insufficient to ensure genuinely informed decision-making and equitable access for all stakeholders. Families, individuals with disabilities, and their caregivers continue to struggle to understand critical aspects of waiver services, eligibility notices, appeals processes, and how to effectively request and manage supports.

Confusing, technical documents keep families in the dark and block informed decisions. This lack of accessible information creates significant barriers to:

• Informed Choice: Individuals and families cannot make truly informed decisions about their care, services, and rights if the foundational documents are inaccessible or incomprehensible. This directly undermines the principle of person-centered planning.

• Equitable Access: Language barriers, low literacy levels, or cognitive disabilities can severely impede a family's ability to navigate the complex waiver system, disproportionately affecting vulnerable populations.

• Effective Advocacy: Without clear understanding of policies and processes, families are significantly disadvantaged when attempting to advocate for their loved ones or exercise their appeal rights.

• Compliance and Outcomes: Misunderstandings due to complex language can lead to unintentional non-compliance, missed opportunities for services, or frustration that detracts from positive outcomes for individuals.

CMS guidance emphasizes the importance of accessible information and communication to ensure meaningful stakeholder engagement and program transparency. To align with these federal expectations and truly empower individuals and families, Indiana must mandate the use of plain language for all FSW materials, including (but not limited to) eligibility criteria, notices of action, appeal procedures, provider handbooks, and any public-facing informational documents. This crucial step is essential for fostering trust, promoting equitable access, and ensuring that all Hoosiers can effectively participate in and benefit from the Family Supports Waiver.

Recommendations for Comprehensive Waiver Revision

To ensure Indiana's Family Supports (FS) and Community Integration and Habilitation (CIH) Waivers genuinely promote person-centered care, community integration, quality, and equitable access, we respectfully urge the FSSA leadership to implement the following critical revisions before submission to CMS:

I. Improve Public Input, Transparency, and Access to Information:

• • Extend and Reopen Public Comment Periods: Immediately extend and reopen the December 2025 public comment periods to allow meaningful review of all proposed amendments and concurrent rule changes.

  • Ensure Inclusive Stakeholder Engagement: Offer virtual sessions, varied scheduling (e.g., evenings), accessible formats, and geographic inclusivity. Establish a standing stakeholder feedback process that continues outside formal comment windows.

  • Centralize All Waiver Materials: Host all draft, approved, and submitted waiver documents—including timelines and CMS responses—in a single, consistently updated location on the FSSA website.

  • Create a Waiver-Specific Hotline: Staff with trained personnel knowledgeable in LOC, waiver navigation, and Medicaid eligibility—not general agents.

  • Increase Transparency of Scoring and Assessment Tools: Publicly explain how Structured Family Caregiving (SFC) and other assessed service levels are scored. Share point systems and eligibility thresholds with families and providers.

  • Phased Implementation with Ongoing Monitoring: Implement new LOC tools or procedures gradually, with structured feedback loops to address disruptions early.

II. Expand Access and Ensure Seamless Transitions

• • Increase Reserved Capacity for Transitions: Substantially expand reserved CIH slots for individuals losing NFLOC under the Health & Wellness Waiver but still meeting ICF/IID criteria. Justify any caps with data or establish a dynamic need-based mechanism.

  • Support Individuals Losing NFLOC: Proactively prevent waitlisting or institutionalization by ensuring continued waiver access under the “reasonable promptness” standard and Olmstead.

  • Clarify and Improve Reassessment Procedures: Make LOC reassessments transparent and fair. Publish criteria and scoring methods, provide copies of assessments to participants, and establish clear appeal pathways.

  • Include NFLOC Individuals in CIH Eligibility: Revise eligibility to include individuals who require high levels of support, even if they no longer meet NFLOC, aligning with Olmstead and 42 CFR §441.301.

III. Redesign Services to Promote Person-Centered Care and Reduce Administrative Burden

A. Participant Assistance and Care (PAC)

• • Simplify Documentation: Remove clinical-style hourly requirements. Accept documentation that aligns with habilitation goals and task-based support.

  • Remove Redundant Nurse Oversight: Eliminate RN requirements unless skilled care is indicated. Refer such needs to Home Health or Wellness Coordination.

  • Permit 15-Minute Billing Increments: Support flexible service delivery and reduce fragmentation.

B. Structured Family Caregiving (SFC)

• • Clarify Program Structure:

    1. Designate SFC as a stipend-based shared living model.

    2. Clarify that principal caregivers are not considered employees and are not subject to FLSA or tax withholding.

    3. Confirm TB testing is not required for family caregivers in SFC.

  • Oversight Reform:

    1. Reduce standard oversight visit frequency to quarterly unless otherwise needed.

    2. Allow virtual visits where medically appropriate.

    3. Eliminate routine nursing visit requirements.

  • Respite Care Clarification:

    1. Define "respite days" clearly.

    2. Permit agencies to bill hourly if the per diem does not cover substitute caregiver costs.

    3. Clarify that SFC agencies are not responsible for overseeing skilled care during respite.

  • Compensation and Training:

    1. Adjust rates to ensure caregivers earn at least minimum wage for 24/7 care.

    2. Offer virtual and self-paced training options.

    3. Allow training waivers or equivalency pathways for experienced caregivers.

  • Streamlined Documentation:

    1. Permit paper documentation when digital tools are not feasible.

    2. Accept dropdowns, checklists, and structured forms.

    3. Limit required entries to health/behavioral changes.

    4. Clarify that medication assistance notes must reflect non-clinical support only.

    5. Eliminate duplicative quarterly narrative reports—align with case management oversight roles per 42 CFR §441.301(c)(1)(vi).

  • Transparency in LOS Assessment:

    1. Share completed LOS assessments with families and providers.

    2. Publish scoring rubrics and appeal options.

    3. State that agencies are not responsible for retaining LOS forms unless directly provided.

C. Day Habilitation

• • Reduce Documentation: Eliminate excessive logs and quarterly reports.

  • Broaden Eligible Activities: Include natural life activities tied to habilitation (e.g., errands, banking).

  • Support Participation Costs: Allow for incidental expenses necessary to access community-based programming.

  • Remove Strategy Step Barriers: Permit support for spontaneous, participant-led interests without prior PCISP inclusion.

D. Behavioral Supports

• • Allow Concurrent Billing: Permit functional behavior assessments and consultation to be billed in the same month when justified.

  • Adjust Annual Caps: Permit individualized exceptions based on need.

  • Reduce Redundancy: Focus documentation on meaningful goals, not compliance artifacts.

  • Reintroduce Intensive Options: Reintroduce or reconfigure IBI or a similar tiered intensive behavioral service.

  • Broaden Provider Eligibility: Permit telehealth, family coaching, and supervised bachelor's-level staff.

E. Music and Recreational Therapy

• • Remove Arbitrary Caps: Eliminate the 6-hour limit; base services on assessed need.

  • Streamline Documentation: Remove clinical-style charting; accept simple habilitative documentation.

  • Clarify Purpose: Frame as habilitative and socially engaging—progress is not always linear or measurable.

F. Extended and Workplace Assistance Services

• • Reduce Documentation: Implement tiered documentation for stable participants.

  • Support Transportation and Transition Needs: Reimburse job-related transportation and short-term unpaid work experiences.

  • Clarify Eligibility: Include remote and home-based jobs.

  • Expand Reimbursable Tasks: Include prompts, navigation, employer communication, family collaboration, and stability supports.

  • Allow Partial Units & Flexible Staffing: Permit 15- or 30-minute billing; support intermittent and shared staff models.

  • Improve Documentation Systems: Offer user-friendly templates and training; ensure reports align with PCISP timelines.

  • Reimburse Travel Time and Reporting: Compensate all provider efforts required by the waiver.

  • Broaden Provider Qualifications: Accept job coaching and employment support experience—not just personal care training.

  • Clarify VR Interaction: Ensure seamless coordination, not duplication, with Vocational Rehabilitation.

G. Facility-Based Habilitation

• • Align with HCBS Settings Rule: Eliminate or redesign if community integration cannot be achieved.

  • Raise Staffing and Rates: Improve ratios and raise reimbursement above $2.51/hour to support safe, dignified care.

  • Cover Community Participation: Include skill-building and transportation costs.

H. Wellness Coordination

• • Base Access on Assessed Need: Avoid rigid score thresholds; allow clinical judgment for lower scores with complex needs.

  • Permit Telehealth: Allow virtual visits when consented and clinically appropriate.

  • Streamline Nurse Documentation: Focus on coordination and medical essentials—not narrative language more appropriate to case management.

IV. Promote Equity and Fair Requirements

• • Broaden “Extraordinary Care” Definition: Include high behavioral and functional support needs—not just medical device reliance—to ensure caregiver compensation equity.

  • Require Risk Disclosure for Self-Directed Care: Inform families in plain language of employer obligations (e.g., workers’ comp, taxes) before opting into participant-directed services.

  • Create a State Documentation Platform for SFC: Build a caregiver-friendly app or tool with offline functionality, structured forms, and minimal narrative requirements.

V. Strengthen Oversight, Infrastructure, and Administrative Support

• Establish Firm Case Management Caseload Caps: Cap full-time caseloads at 35–40 individuals to prevent burnout and ensure quality.

• Realign Responsibilities:

  • Reassign clinical oversight (e.g., nursing plan review) to licensed professionals.

  • Remove landlord dispute resolution, invoice review, and construction sign-offs from case manager duties.

  • Clearly define case manager role as service coordination—not clinical, legal, or financial.

• Reduce Administrative Redundancy:

  • Eliminate duplicative provider reports already addressed through case management.

  • Either increase reimbursement or fund admin support to manage documentation.

• Fund Infrastructure for New Mandates: Tie any new requirement to appropriate funding for training, staffing, software, or admin systems.

• Mandate Plain Language for All Materials: Ensure all waiver materials—eligibility criteria, notices, service descriptions—are written in accessible language to support informed decision-making.

I respectfully request that Indiana revise the Family Supports & CIH waivers to reflect federal HCBS requirements under 42 CFR §441.301–302, uphold the integration mandate of the ADA and Olmstead, and center the needs, voices, and lived experiences of individuals with disabilities and their families. True person-centered care cannot be achieved through systems that prioritize paperwork over people.

Thank you for the opportunity to submit these comments.

Julie McGill