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Massachusetts Healthy People 2020 Autism Roadmap Report: Understanding Needs & Measuring Outcomes

Full Report (PDF)

Overview

In 2013, the Massachusetts Governor’s Special Commission Relative to Autism (“Autism Commission”) issued a landmark report that determined in spite of Massachusetts’ national leadership on a host of autism issues, gaps in services and supports still persist in the state and that “there is a critical need to develop a comprehensive statewide approach that will respond to the needs of this rapidly increasing population.” One major priority called to “determine the number of people with autism in Massachusetts and their support needs by implementing a plan for consistent statewide data collection.”

In response, the University of Massachusetts Medical School-Eunice Kennedy Shriver Center conducted a state autism needs assessment from September 2013 through October 2016 using the framework of the six “Healthy People 2020” MCHB core outcome indicators for children and youth with special health care needs (CYSHCN) with autism and developmental disabilities (ASD/DD) as well as additional supplemental indicators.

The Massachusetts Healthy People 2020 State Autism Roadmap Report shares needs assessment findings to assist the Massachusetts Autism Commission in developing a blueprint for better data collection across the system of care that serves children and youth with ASD/DD and their families in Massachusetts. The report provides potential sources of and recommendations for both public and private data collection within the state that can be considered by the Commission and its subcommittees and built upon and monitored by appropriate stakeholder entities. It also offers future possibilities that may need more development and surveillance and resources that may help. This information may also be useful for a variety of audiences – from research to public health to education to family advocacy groups and more.

The report objectives are to:

  1. Assess and quantify baseline data for the state needs of children and youth with autism and developmental disabilities aligned with six MCHB core outcome indicators;
  2. Make recommendations to address needs identified from the needs assessment; and
  3. Offer comprehensive and strategic surveillance recommendations to monitor and report on future state autism/DD activities and outcomes.  

The Six Healthy People 2020 Core Indicators:

  1. Early Identification and Screening
  2. Medical Home
  3. Accessible Community-based Service System
  4. Family Involvement
  5. Transition to Adult Health Care, Work & Independence
  6. Adequate Private &/or Public Insurance to Pay for Services

In addition, three supplemental sections include: Education, Housing and Cultural Considerations.

Within each of the topics, the report will focus on several factors for underserved children and youth: race, culture, language, immigrant status, region, level of function, and mental health.

Research Team

  • Elaine Gabovitch, MPA Principle Investigator, Shriver Center LEND Program, Massachusetts Act Early Program
  • Emily Lauer, MPH Center for Developmental Disabilities Evaluation & Research (CDDER)
  • Courtney Dutra, MPA Center for Developmental Disabilities Evaluation & Research (CDDER)

Funding

This publication was produced by the Shriver Center Leadership Education in Neurodevelopmental and Other Disabilities (LEND) Program, Massachusetts Act Early and the Center for Developmental Disabilities Evaluation and Research of the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School, and was funded by a grant from the Health Resources & Services Administration-Maternal & Child Health Bureau (HRSA-MCHB) (Award No. H6MMC26244). The opinions contained in this document are those of the grantee and do not necessarily reflect those of the funder.

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