Can State Early Intervention Programs Meet the Increased Demand of Children Suspected of Having Autism Spectrum Disorders? Marissa D. Wise, BA,*��� Alison A. Little, MPH,* Jaime Bruce Holliman, MA,*��� Paul H. Wise, MD, MPH,�� C. Jason Wang, MD, PhD*��� ABSTRACT: Objective: To determine whether Early Intervention programs have the capacity to accommodate the expected increase in referrals following the American Academy of Pediatrics��� 2007 recommendation for universal screening of 18- and 24-month-old children for Autism Spectrum Disorders (ASD). Method: We conducted a telephone survey of all state and territory early. Intervention coordinators about the demand for ASD evaluations, services, and program capacity. We used multivariate models to examine state-level factors associated with the capacity to serve children with ASD. Results: Fifty-two of the 57 coordinators (91%) responded to the survey. Most states reported an increase in demand for ASD-related evaluations (65%) and services (58%) since 2007. In addition, 46% reported that their current capacity poses a challenge to meeting the 45-day time limit for creating the Individualized Family Service Plan. Many states reported that they have shortages of ASD-related personnel, including behavioral therapists (89%), speech-language pathologists (82%), and occupational therapists (79%). Among states that reported the number of service hours (n 34) 44% indicated that children with ASD receive 5 or fewer weekly service hours. Multivariate models showed that states with a higher percentage of African-American and Latino children were more likely to have provider shortages whereas states with higher population densities were more likely to offer a greater number of service hours. Conclusion: Many Early Intervention programs may not have the capability to address the expected increase in demand for ASD services. Early Intervention programs will likely need enhanced re- sources to provide all children with suspected ASD with appropriate evaluations and services. (J Dev Behav Pediatr 31:469���476, 2010) Index terms: early intervention, autism, Part C. Autism spectrum disorders (ASD) have been a growing concern for both professionals and parents over the past decade. A Centers for Disease Control and Prevention (CDC) multi-site study estimated that in 2006, about 1 in 110 children aged 8 had ASD in the United States, a 57% increase from 2002. It is not known whether this repre- sents a true increase in the prevalence of ASD or is the result of increasing awareness and identification of children with ASD.1 ASD is classified into 3 main subtypes: Autistic Disorder, Asperger���s Disorder, and Pervasive Developmen- tal Disorder-Not Otherwise Specified.2 Although the sever- ity of the disorders varies, children with any form of ASD commonly exhibit social impairment, communication de- lays, and repetitive or restrictive behaviors,3 which can affect the well-being of both children and their families.4 To address these developmental issues, the National Research Council recommends that children with ASD have ���active engagement in intensive instructional programming��� for a minimum of 25 hours per week.5 A growing body of evidence suggests that the signs of ASD may be present during the first 2 years of life,6,7 which makes early detection and treatment an important possibility. Several intervention strategies, including Ap- plied Behavioral Analysis and Treatment and Education of Autistic and related Communication-handicapped Children, have shown promise for improving functional outcomes,8 particularly if begun early.9 In light of these findings, in October 2007, the American Academy of Pediatrics recommended universal screening of all chil- dren for ASD at the 18- and 24-month visits, with imme- diate referral for services if children screen positive.10 For many young children, and virtually all poor children, who show evidence of ASD before the age of 3 years, services are provided primarily through the Early Interven- tion (EI) program. EI is a federally enacted, state-coordi- From the *Division of General Pediatrics, Department of Pediatrics, Boston Medical Center, Boston, MA ���Weill Cornell Medical College, New York, NY ���Department of Community Health Sciences, Boston University School of Public Health, Boston, MA ��Center for Policy, Outcomes and Prevention, Department of Pediatrics, Lucile Packard Children���s Hospital and Stanford University School of Medicine, Stanford, CA Division of General Pediatrics, Department of Pedi- atrics, Boston University School of Medicine, Boston, MA. Received September 2009 accepted April 2010. Supported by the Robert Wood Johnson Physician Faculty Scholars Program (to C.J.W.). We report no financial or commercial conflicts of interest between our funding sources and any authors or contributors of this study. Address for reprints: C. Jason Wang, MD, PhD, Department of Pediatrics and Public Health, Boston University and Boston Medical Center, 88 East Newton St, Vose 3, Boston, MA 02118 e-mail: jason.wang@bmc.org. Copyright �� 2010 Lippincott Williams & Wilkins Original Article Vol. 31, No. 6, July/August 2010 www.jdbp.org | 469

nated program funded through Part C of the Individuals with Disabilities Education Act that provides services for children 36 months with developmental delays or disabil- ities.11 Although it is not mandatory, all 50 states, 6 eligible territories, the Bureau of Indian Education and the Depart- ment of Defense participate in the EI program. There is substantial variation in both the organization and types of services offered by state EI programs. Among the various programs, many provide therapies that are likely to be effective for children with ASD, including Applied Behav- ioral Analysis and Treatment and Education of Autistic and related Communication-handicapped Children.8,12,13 The American Academy of Pediatrics��� recommendation will likely increase the number of children referred to EI who are suspected of having ASD, including some children with false positive ASD screens.10,14 However, the capacity of EI to provide evaluations and needed services in re- sponse to the expected increase in ASD referrals remains unclear. This strain on the capacity of EI programs to meet the needs of children with suspected ASD and their families may become even more acute as federal and state funding of human services faces serious budgetary pressures.15 The aim of this study was to examine state and territory EI programs��� perceived capabilities to address the expanding population of children referred for ASD-related evaluation and intervention services. METHODS Sampling and Subject Recruitment We attempted to contact the early intervention (EI) coordinators from all 50 states, 6 eligible territories, the Bureau of Indian Education, and the Department of De- fense. The coordinator in the Department of Defense stated that she was ineligible to participate because of federal regulations therefore, the total number of eligi- ble coordinators was 57. The majority of surveys were completed by phone however, we also emailed a web link to an online version in Survey Monkey16 to coordi- nators (or their assistants) who requested it. Contact information for the coordinators is publically available on the National Early Childhood Technical Assistance Center website.17 A maximum of 3 attempts were made to reach each coordinator by telephone. Before beginning the survey, we confirmed that the respondent was either the EI coordinator, or another state EI representative who was designated as most knowledgeable about services for children with autism spectrum disorders (ASD). We informed respondents that we would not link their responses to their state EI programs and that all data would be reported in aggre- gate. The survey was fielded between January and March 2010. This study was considered exempt by the Boston University Medical Campus Institutional Review Board. Survey Development We developed a 19-item survey to assess EI coordina- tors��� perspectives on their state EI programs. The survey asked all respondents about (1) the increase in demand for autism spectrum disorders (ASD) evaluation and services, (2) the current capacity of the program, including difficul- ties in meeting the Individualized Family Service Plan 45 day time limit and need for prescribed services, budget adequacy and changes, and personnel shortages, and (3) ASD-specific services, including how children qualify for services, the available therapeutic modalities18 and hours of services provided per child. Personnel shortages measured included the 5 types of EI providers most relevant to chil- dren with ASD: behavioral therapists, speech-language ther- apists, occupational therapists, psychologists, and special educators. We defined shortages of 2 or more providers as a ���significant shortage.��� Ten survey items included follow-up questions to assess whether the response was based on the coordi- nator���s ���best guess��� or available state-level data. Partici- pants also were able to provide open-ended comments after each question, either over the phone or in free-text comment boxes in Survey Monkey. The survey content was reviewed with several individuals knowledgeable about EI and modified in response to their comments before fielding. Data Analysis We used unpaired t-tests to compare state-level demo- graphic and programmatic factors between respondent and nonrespondent states. Descriptive analyses were performed for individual survey items. For regression models, we selected state-level factors that may predict key outcomes related to program capacity and service provision. State level variables included the prevalence of autism at 8 years (cases per 1,000 children),19 which may reflect a greater demand for autism-specific ser- vices, population density (in hundreds of people per square mile),20,21 because home-based services may be more costly for rural states, and the percent of children 0 to 3 who are underserved minorities (African-American or Latino),22,23 which may reflect a greater demand for services through public programs such as EI. The prev- alence of autism was not available for 5 states/territories. The percent of children 0 to 3 who are Latino was not available for 3 territories therefore, the percent of chil- dren 0 to 3 who are African-American or Latino was not calculated for these programs (See Table 1 for state/ territory demographic characteristics). Data were ana- lyzed using Stata 10.24 RESULTS A total of 52 coordinators (91%) responded to the survey. The respondents included 47 US States, 4 eligible territories, and the Bureau of Indian Education. To- gether, the respondent states and territories account for more than 95% of all children 0 to 36 months old in the United States.22,23,25 Among the 5 nonrespondents, 1 was not available to participate during the specified time, and the remaining 4 coordinators were not reachable. Re- spondents and nonrespondents did not differ signifi- 470 Capacity of EI Programs to Serve Children With Autism Journal of Developmental & Behavioral Pediatrics