Healthy People 2020 Roadmap for Massachusetts Children and Youth with ASD/DD: Understanding Needs and Measuring Outcomes (HRSA-MCHB)

2014

PROBLEM: A major report released by the Massachusetts Autism Commission issued recommendations to develop a comprehensive statewide approach that will respond to the needs of people with autism spectrum and other developmental disorders in the state. One major priority calls to determine the number of people with autism in Massachusetts and their support needs by implementing a plan for consistent statewide data collection. GOAL(S) AND OBJECTIVES: The UMass Medical School-E.K. Shriver Center will develop a state planning project designed to inform efforts to establish a state-level data collection and surveillance plan for systems of services for children and youth with ASD and DD. The objectives will be to: (1) assess state needs of children with ASD and DD that align with six MCHB core indicators; (2) refine the existing state plan to address identified needs; and (3) outline a comprehensive evaluation plan and program surveillance strategy to monitor and report on future state ASD/DD outcomes. The plan will focus on underserved children and youth by race, culture, language, immigrant status, region, transition age, insurance coverage, level of function, and mental health status. METHODOLOGY: The needs assessment will include quarterly meetings with a program advisory board, receipt of state agency MOUs, identification of datasets available for secondary analysis, creation of Data Abstraction Tool, and data abstraction; dissemination of a parent/provider survey; regional focus group meetings; expert interviews; analysis of secondary data sources, survey and focus group data. The resulting state plan will be compared with the pre-existing Autism Commission state plan, and refined with the program advisory board. COORDINATION: The project will convene a coalition of Massachusetts ASD/DD stakeholders including state agency representatives, the MA Title V program, the MA Act Early state team, the MA Chapter of the AAP, family and community-based organizations, self-advocates, providers, university faculty and others from across the state. EVALUATION: The project team will outline a comprehensive evaluation plan and program surveillance strategy to monitor future state ASD/DD outcomes in collaboration with the program advisory board. The team will measure the project goals, objectives, deliverables through the two-year period through midpoint and post-project advisory board meeting evaluations, progress reports; and contingency plans. ANNOTATION: The proposed project will address a state priority in the 2013 Massachusetts Autism Commission report to develop a comprehensive statewide approach to address the needs of MA children and youth with autism and developmental disorders by implementing consistent statewide data collection practices. The project will: (1) assess state needs of children with ASD & DD that align with the MCHB Healthy People 2020 indicators, (2) refine a state plan to address identified needs; and (3) outline an evaluation plan and program surveillance strategy to monitor and report on state ASD/DD activities and outcomes in the future.

autism spectrum disorder, needs assessment, Healthy People core indicators

Performing Research or Evaluation, Developing & Disseminating Information

Quality Assurance, Education & Early Intervention, Child Care-Related Activities, Health-Related Activities, Employment-Related Activities, Quality of Life, Other - Cultural Diversity, Other - Leadership

Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers, General Public

Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Rural/Remote, Urban, Specific Groups

State, National

Federal

N/A