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State Variability in Diagnosed Conditions for IDEA Part C Eligibility

Barger, Brian PhD; Squires, Jane PhD; Greer, Maureen BA; Noyes-Grosser, Donna PhD; Martin Eile, Julia EdM; Rice, Catherine PhD; Shaw, Evelyn Med; Surprenant, Kala Shah JD; Twombly, Elizabeth MS; London, Sarah MPH; Zubler, Jennifer MD; Wolf, Rebecca B. MA

doi: 10.1097/IYC.0000000000000151
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An infant or toddler can begin the process of receiving Part C early intervention services by having a diagnosed condition with a high probability of developmental delay (Individuals with Disabilities Education Improvement Act, 2004). How states define those diagnosed conditions that begin the initiation process varies widely. Lists of diagnosed conditions were collected from state Part C websites and Part C coordinators for a descriptive analysis. Across 49 states, the District of Columbia, and 4 territories, a final list of 620 unique conditions was compiled. No single condition was listed by all jurisdictions. Hearing impairment was the condition listed by the most states (n = 38), followed by fetal alcohol syndrome (n = 34). Of the 620 conditions, 168 (27%) were listed by only 1 state, 554 (89%) were listed by fewer than 10 states, and 66 (11%) were listed by 10 or more states. Of these 66 conditions, 47 (71%) were listed by fewer than 20 states. Most of these 66 conditions (n = 48; 72.7%) had a prevalence of “very rare or rare,” 8 (12%) were “common,” 6 (9%) were “very common,” and 4 (6.1%) were “unknown.” The wide heterogeneity in the number and type of diagnostic conditions listed across states should be further investigated as it may represent imbalances in children with diagnosed conditions gaining access to Part C evaluations and individualized family service plans and potentially the services themselves across states. In addition, providing ready access to lists of diagnosed conditions is a simple step that could help states and Part C programs facilitate access to services.

Center for Leadership in Disability, School of Public Health, Georgia State University, Atlanta (Dr Barger); Disability Research and Dissemination Center, Arnold School of Public Health, University of South Carolina, Columbia (Dr Barger); Center on Human Development, University of Oregon, Eugene (Dr Squires and Ms Twombly); Infant & Toddler Coordinators Association, Indianapolis, Indiana (Ms Greer); Office of Special Education Programs (Dr Noyes-Grosser and Ms Martin Eile) and Office of General Counsel (Dr Surprenant), US Department of Education, Washington, District of Columbia; Department of Psychiatry and Behavioral Sciences (Dr Rice) and Emory School of Public Health (Ms London), Emory University, Atlanta, Georgia; Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill (Ms Shaw); Carter Consulting, Inc, Atlanta, Georgia (Dr Zubler); and National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia (Drs Rice and Zubler and Mss London and Wolf).

Correspondence: Brian Barger, PhD, Center for Leadership in Disability, School of Public Health, Georgia State University, 75 Piedmont NE, Atlanta, GA 30606 (bbarger1@gsu.edu).

Dr Barger, Dr Squires, and Ms Greer contributed equally to the development of this project.

From 2014 to 2015, Dr Barger was partially supported by a Policy Research Fellowship sponsored by the University of South Carolina: Disability Research and Dissemination Center in collaboration with the Centers for Disease Control and Prevention's National Center on Birth Defects and Developmental Disabilities, “Learn the Signs. Act Early” program; from 2015 to 2017, Dr Barger was partially supported by a grant for the Center for Leadership in Disability at Georgia State University as a University Center for Excellence in Developmental Disabilities (90DD0662), Administration on Intellectual and Developmental Disabilities. In addition, partial support was provided by RTOI Agreement 2010-05-007 Sub Contract Agreement No. 449, between the Association of University Centers on Disabilities and the Centers for Disease Control and Prevention.

The authors thank Drs Joe Sniezek (CDC-NCBDDD, retired) and Jennifer Williams (CDC-NCBDDD) for their work using ICD codes to identify redundant conditions for this project, and Ms Miyah Sundermeyer for her help in fact checking of the prevalence rate data.

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention or the United States Department of Education, or any of its subcomponents.

The authors declare no conflict of interest.

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