A Full Slate of Infants and Toddlers Mixed with Low Medicaid Reimbursement Yields a Recipe for Disaster

Published in the September 2024 issue of the ISHA Voice.

By Valerie Brosius, ABD/CCC-L, a member of the Billing and Reimbursement Committee

What happens when you have a 7% increase since 2019 in the number of infants and toddlers in need of early intervention services, you mix in a system of low Medicaid reimbursement, pepper it with as many as 8.41% of children on waitlists for services and you add a limited number of highly qualified professionals providing care since they are not incentivized?  In Illinois, we refer to this as a recipe for disaster and a call for change. The Individuals with Disabilities Education Act (IDEA), which was first passed in 1975 as PL 94-142, mandates that all eligible students with disabilities must be provided with a Free Appropriate Public Education (FAPE) that addresses their identified individual needs (Early Childhood Technical Assistance Center, 2024) in the least restrictive environment (LRE), and the right of their parents to be equal partners in defining the best educational placement and services for them. While IDEA has 4 parts (A-D), under Part C, provisions for serving infants and toddlers with disabilities 0-2 and their families are addressed. More specifically, Part C is a “federal grant program that assists states in operating a comprehensive statewide system of early intervention services” (ECTA, 2024, ¶ 2) and supports family and caregivers as they expand the child’s learning and development opportunities in their natural settings, including the home, daycare and the community. However, since education falls under the state’s domain per the Constitution, each state has its own policies, procedures, and rates of reimbursement for Medicaid services. Thus, while the U.S. Department of Health and Human Services authorizes the Centers for Medicare and Medicaid to distribute Medicaid funds to states, the allocation is designed to match the state’s expenditures for the cost of medical assistance and the rate is determined by a formula tied to state per capita income (ASHA, Module 8, Slide 15, 2009). This in turn leads to significant differences in terms of Medicaid reimbursement rates across the nation and waitlists for children in need of early intervention services, including speech, language, and hearing treatment.

The Bipartisan Policy Center (2018) reported that, “Governors are responsible for allocating federal dollars to agencies that support programs for young children. […}What happens to the funds within each state varies greatly and is almost entirely a decision made within the states. States with the highest rankings tend to show efficiency and cost-effectiveness by managing programs serving children under fewer agencies. Conversely, most states near the bottom of the rankings split funding streams and programs across multiple agencies, frequently leading to confusion for families seeking services” ( ¶ 6). 

Looking at specific data as to the percent of infants and toddlers receiving IDEA Part C services, the top ten states and the percent of children served are as follows.

Source: ZERO TO THREE, State of Babies Yearbook 2023

Research by Burbak (2023) of Georgetown University McCourt School of  Public Policy Center for Children and Families reveals that 17 states provide supplemental payment for a child’s social emotional screening, revealing an overlap in terms of the aforementioned data for Massachusetts, Pennsylvania, Rhode Island, Indiana, Connecticut, and New Jersey and a relationship between payment for services and access to early intervention screening and intervention services delivered by qualified providers.

Providers in Illinois, however, are leaving the early intervention system secondary to poor compensation and lack of benefits. These departures negatively impact access to services for the 26,500 students and families enrolled in the system, contributing to long waiting lists and delays for those not yet receiving services, and limited resources for children receiving intervention. Illinois providers, for the most part, operate as fee-for-service independent contractors and therefore do not receive health insurance, paid time off, mileage reimbursement, and payment for cancelled or “no show” appointments. “While Illinois providers make an average of 60-77 dollars an hour, they take home an average annual pay of 32,00-50, 000 dollars after paying taxes and expenses (Zero to Three, 2023, 2;Abarca, 2023). In response to these challenges, the EI Grassroots Alliance, a group of Illinois service providers, advocated for increased provider rates via sending a petition to Governor Pritzker, surveying providers, and collecting data, and meeting with IDHS and legislators. The EI Grassroots Alliance noted that in the past two decades, providers have only received three nominal increases. The Alliance was successful, and in May of 2023, Illinois legislators approved the state’s Fiscal Year (FY) 2024 budget which included an increase just shy of 34.5 percent over the FY 2023 budget for the Illinois Early Intervention (EI) Program. “Forty million dollars of the new state budget has been allocated for the EI program” (Zero to Three, 2023, 1;Abarca, 2023). Half of this budget increase was used to increase EI provider compensation by 10 percent. However, the Start Early Illinois Policy Team (2023) found that the increase fell short as they called for EI provider reimbursement rate increases of at least 30 percent to simply account for inflation. 

This work thus set the stage for this year’s EI Grassroots Alliance Provider meeting held in conjunction with Start Early on May 8^th. Jesse Rojo, of Raising Illinois joined the meeting to voice his support for providers and the children and families served by the Early Intervention system, as did Susana Salgado, a Family Leader also with Raising Illinois and a member of the EI Workgroup. In addition, legislative EI champion Representative Hirschauer discussed efforts to meet with Pritzker to advocate for a 40-million-dollar budget allocation, rather than the 6-million-dollar maintenance funding proposed by the Governor. The EI Petition initiated by the EI Grassroots Alliance was short 3,000 signatures, and there was a call to action (a button directly linked to legislators) to increase advocacy efforts and funding. Adding strength to the call for increasing provider reimbursement, the Cross State Research Project, led by Ted Burke, found that Illinois providers were 50% underpaid compared to other states. Furthermore, the Cost Modeling Project led by AFTON Partners concluded after convening workgroups that providers provide 2 hours of unpaid work for every paid hour of work. Placing last year’s rate increase in context, it was found that the increase brought provider’s reimbursement in-line with a 2004 living wage. Indeed, a recent report compiled by Burke and funded by the BUILD Initiative entitled, “Early Intervention Recommendations Cross-State Research to Inform Early Intervention Service Coordination and Provider Services in Illinois” found that increasing the reimbursement rate for speech-language pathologists to $103.10 per hour, Illinois speech-language pathologist’s rates at best, would align with those of states with a comparable living wage (2024, p. 34).  

This stands in stark contrast to the research that finds that 7-17 dollars are saved per dollar spent delivering EI services to children and their families. Additionally, Jonathan Doster, Director of Legislative Affairs at Start Early, stated that the 6 million budget allocation proposed by Pritzker “will not increase compensation received by providers and that the compensation shortfall has resulted in the percent of families and children receiving late care, doubling.” While Representative Hirschauer indicated that the budget is indeed “tighter this year,” she called for members to share real stories and make calls to their legislators. She in turn, shared that she was testifying before the appropriations committee and working with the General Assembly. As a past early childhood provider, Hirschauer also identified connecting with parents from SD U-46, the second largest school district in the state, in her office during “Latino Unity Day,” learning that their number one issue concerned EI and the lack of bilingual speech-language pathologists for delivering speech and language services. Parents noted that bilingual providers were in short supply or nonexistent and waiting lists were long, which correlated with Burke’s findings that, “Speech-language pathologists also represent the profession, with the highest percentage of states (87%) reporting shortages for EI services …” (2024, p.8). Therefore, based on the data, infants and toddlers are not being served in a timely manner universally. Inequitable access to services was also highlighted by the Elgin branch of Community Organizing and Family Issues (COFI). 

Likewise, the Education Trust (2021) spearheaded an Executive Summary based on national data collected by Senior P-12 Research Associate Carrie Gillespie, calling for increasing equity in early intervention and finding that Black and Latino children are identified as eligible for EI services much later than their white peers and subsequently fail to receive the services for which they are eligible and are more likely to encounter challenges due in part to insufficient outreach and a lack of culturally competent services. In fact, Black and Latino children with developmental delays were 78% less likely of having their eligibility and need for intervention services identified. In addition, while states report data as to Part C services in terms of race, ethnicity, gender and setting, dual language learner status and income level are not commonly disaggregated. Gillespie (2021) further reports that a “nationally representative study that followed young children from the time they entered early intervention services as infants and toddlers until kindergarten completion found that families of color had more challenges and negative experiences when entering into early intervention services, including difficulty in finding out about existing services and initiating service delivery, and feeling that their concerns were being ignored by professionals and/or that professionals did not respect their cultural background and values” (p. 10). 

Clearly, the diversity and cultural competency and humility of early intervention service providers needs to be a focus as Illinois strives to mirror the diversity evident in the families of the infants and toddlers being screened, evaluated, and/or deemed eligible for services. Intervention services also need to be culturally, linguistically and ability responsive. Reimbursement rates must also increase to prevent further attrition or loss of providers and to ensure the timely delivery of services, supporting families in assisting their child’s development and attainment of developmental milestones while affording providers a “living wage” by today’s standards. Burke (2024) has also proposed developing a “grow your own program” for early intervention professions per identified needs citing Hawaii Pacific University’s program to increase the EI PT workforce and Georgia State University’s specialized training for graduate students enrolled in SLP, PT and OT programs utilizing the Office of Special Education Programs Personnel Preparation Grants. He also advocates for the State Central Billing Office (CBO) assuming the process of billing private insurance. Other recommendations include changing the recipe for early intervention services by means of developing an Illinois Comprehensive System of Personnel Development (CSPD), establishing EI Ambassadors, adding a robust marketing campaign, and stirring with dedicated public service announcements concerning early intervention services and needed providers. These recipe changes implemented over 2025 and 2026 hold the promise of a more successful and streamlined early intervention system with increased provider retention and improved access to services for infants and toddlers throughout Illinois. The full report can be accessed here: https://providerconnections.org/wp-content/uploads/2024/04/Illinois-EI-Recommendations-04.20.24.pdf 

Reimbursement rates in the Midwest can be compared and are reported in the appendix which has been compiled by Carrie Kerr, MS, CCC-SLP/L ISHA STAR, with assistance from Caroline Berger, JD, Director of Healthcare and Policy, Medicaid at ASHA.

References

Abarca, D. L. (2023, June 15). Illinois General Assembly approves budget increases for early intervention program. Retrieved May 28 from: https://www.zerotothree.org/resource/illinois-general-assembly-approves-budget-increases-for-early-intervention-program/

American Speech Hearing Association (ASHA) (n.d.). Module 8: Coding, Reimbursement, and advocacy. https://www.asha.org/practice/reimbursement/module-eight/

Bipartisan Policy Center (2018, December 13). New report ranks states on efficient use of early childhood funds. Retrieved May 29 from: https://bipartisanpolicy.org/press-release/new-report-ranks-states-on-efficient-use-of-federal-early-childhood-funds/

Burbak, E. W. (2023). Medicaid policies to help young children access infant early childhood mental health services: Results from a 50-state survey. Center for Children and Families: Georgetown University McCourt School of Public Policy. Retrieved May 28 from: https://ccf.georgetown.edu/2023/06/09/medicaid-policies-to-help-young-children-access-infant-early-childhood-mental-health-services-results-from-a-50-state-survey/

Burke, T. (2024, June 4). Early Intervention Recommendations Cross-State Research to Inform Early Intervention Service Coordination and Provider Services in Illinois. Retrieved August 6 from: https://providerconnections.org/wp-content/uploads/2024/04/Illinois-EI-Recommendations-04.20.24.pdf

Early Childhood Technical Assistance Center (2024). Individuals with Disabilities Education Act (IDEA). Project Officer: Julia Martin Eile.  https://ectacenter.org/idea.asp

Executive Summary: Early Childhood Initiative: Creating an Integrated Efficient Early Care and education System to Support Children and Families-A State-by-State Analysis (2018, December). Retrieved May 30 from: https://bipartisanpolicy.org/wp-content/uploads/2019/03/Creating-an-Integrated-Efficient-Early-Care-and-Education-System-to-Support-Children-and-Families-A-State-by-State-Analysis.pdf

Gillespie, C. (2021, May). Increasing equity in early intervention. The Education Trust. https://edtrust.org/wp-content/uploads/2014/09/Increasing-Equity-in-Early-Intervention-May-2021.pdf

Start Early champions for early learning. The Illinois Policy Agenda FY 2024-FY 2027. Retrieved May 30 from: https://www.startearly.org/what-we-do/policy-advocacy/illinois/illinois-policy-agenda/

Zero to Three: Early Connections last a lifetime. State and local policy. (June 15, 2023). Retrieved May 29 from: https://www.zerotothree.org/resource/illinois-general-assembly-approves-budget-increases-for-early-intervention-program/

Zero to Three, “State of Babies Yearbook 2023,” June 2023. Retrieved May 30 from: https://stateofbabies.org/wp-content/uploads/2023/06/State- of-Babies-2023-Full-Yearbook-061820.pdf

Appendix: Midwest Reimbursement Rates (Carrie Kerr, MS, CCC-SLP/L ISHA STAR, with assistance from Caroline Berger, JD, Director of Healthcare and Policy, Medicaid at ASHA).

Valerie Brosius is a bilingual SLP and past president of ISHA and CSAP. She is Chair of the Site Visitor Education Training Committee of the CAA as well as Chair of the Joint Commission. Valerie is a member of Sig 14 and remains active in ISHA, serving on a number of committees.