AMCHP State Systems Grant for MA Act Early State Team

2012

STATEMENT OF NEED AND OVERALL GOAL a. Overview of the Problem Numerous studies have documented that the early diagnosis of autism spectrum disorders (ASD), i.e., children being diagnosed prior to the age of four, is essential to ensure that children are enrolled in early and intensive services, which has positive impact on their developmental progress and outcomes. Although the rate of early identification of children in Massachusetts with ASD has improved significantly, disparities remain in which children have access to early screening. A study examining trends in ASD diagnoses by age 36 months in the Massachusetts Early Intervention (EI) program identified that between 2001 and 2005 early diagnoses of ASD increased 66%, and the incidence of early diagnoses increased from 1 in 178 for the 2001 birth cohort to 1 in 108 for the 2005 birth cohort. Despite these encouraging trends, some subpopulations of children with ASDs still do not receive early and timely screening. This includes children of mothers aged <24 years, those whose primary language is not English or those who are foreign born. Overall, the available data indicate that populations whose primary language is not English and those of younger parents may not be receiving early diagnoses. b. Rationale The Massachusetts Act Early state plan is designed to strengthen state and community systems for the early identification and intervention for children with signs of Autism Spectrum Disorders (ASD) and other Developmental Disabilities (DD). The Act Early Team envisions a future that uses a family-centered model that overcomes geographic, socio-economic, cultural, and linguistic barriers to assure equal access and adequate funding for all children in the Commonwealth to receive: o Universal screening for ASD and DD o Timely and accurate diagnosis of ASD and other DD o Ongoing care coordination in a medical home through the lifespan o Individualized treatment based on best available evidence and best practices o Support for transition to adulthood and ongoing adult services o Comprehensive supports for all family members of individuals with ASD This project will promote efforts to provide children of families whose primary language is not English with appropriate developmental screening and, when indicated, timely evaluation for ASDs in their native language. The target populations are families who receive primary care at community health centers and whose primary languages are Chinese, Haitian-Creole, Spanish, or Vietnamese, representing the most prevalent non-English speaking linguistic groups within the Boston Public Schools. Community health centers in Massachusetts are at the leading edge of eliminating health disparities for racial and ethnic populations by serving these populations using culturally and linguistically-competent approaches to care that are community- and neighborhood-based. Health center patients are disproportionately low-income, publicly insured or uninsured, and are at higher risk for chronic and complex medical conditions. Three community health centers in Boston will participate in this project with the goal of establishing, implementing and evaluating screening protocols that can be replicated in other health centers/primary care practices to facilitate timely screening, diagnosis, and enrollment in care. This effort will help reduce the aforementioned disparities in the provision of early ASD diagnoses in children whose families primary language is not English. The Modified Checklist for Autism in Toddlers (M-CHAT) will be used as the recommended developmental screening tool. It is a 23-item questionnaire that can be completed by parents in an office setting. It has been translated into a number of languages, but not into Haitian-Creole, which will be accomplished through this initiative. The translated version will also be made available to Dr. Diana Robins, a principal developer of the M-CHAT, for consideration of its inclusion on the M-CHAT website. II. EXPECTED BENEFITS a. Project Goals, Objectives and Strategies Project Goal: This initiative will improve developmental screening and referral for ASD in primary care for children whose families whose primary language is not English. Objective: The project will develop a replicable ASD screening protocol for children from non-English speaking families. Strategies: 1) Provide translated versions of the M-CHAT in the primary languages of families receiving care in Community Health Centers (CHCs) 2) Assist CHCs in identifying staff members with foreign language proficiencies at each site who can assist with administering the M-CHAT to non-English speaking families. Staff members who speak Chinese, Haitian-Creole, Spanish, or Vietnamese will be identified. 3) Train appropriate staff at three CHCs in metropolitan Boston on use of the M-CHAT to screen young children 4) Develop protocol of culturally competent acceptable screening practices for children from non-English speaking families. b. Project Outcomes When this projects goals are met, families who speak Chinese, Haitian-Creole, Spanish, or Vietnamese will have access to ASD screening at their Community Health Center in their native language and thus will be more likely to be referred for timely diagnostic evaluations. This is an initial step in the MA Act Early Teams state plan to ensure universal screening and early diagnosis for children with ASD. A protocol to replicate this process will be available for distribution to other CHCs and primary care settings. Outputs proposed to measure each of the strategies listed in the Project Goal section above include: 1) Numbers of CHC staff trained 2) Number of staff with foreign language proficiencies to conduct the M-CHAT screening will be identified at each CHC site; we will document the number of staff who will screen as identified by language capacity 3) Translation of the MCHAT in Haitian-Creole will be completed by May, 2011 4) Description of linguistic and culturally competent protocol for early ASD screening of young children and timely referral for diagnostic evaluations developed in collaboration with staff at CHCs by October, 2011

Training Trainees, Performing Technical Assistance and/or Training, Developing & Disseminating Information

Education & Early Intervention, Health-Related Activities, Quality of Life, Other - Cultural Diversity

Students/Trainees (long or intermediate trainees), Professionals and Para-Professionals, Children/Adolescents with Disabilities/SHCN, General Public

Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas

State

Federal

N/A