Massachusetts Healthy People 2020 Autism Roadmap Project

1. Massachusetts Healthy People 2020 Autism Roadmap Project Elaine Gabovitch, MPAUMass Medical School-Shriver Center April 21, 2017

2. Disclosures • This project was funded by U.S. Department of Health and Human Services/Health Resources and Services Administration (HRSA) grant # H6MMC26244 from September 2013 to October 2016. • The views and recommendations shared here are those of the UMass Medical School-Shriver Center HP2020 needs assessment project team and have not been endorsed or approved by the Massachusetts Department of Public Health or the Commonwealth of Massachusetts EOHHS. • The presenter formerly served as the project’s principal investigator on the UMMS-Shriver Center faculty and continues to serve as adjunct faculty. She became the Director of the Division for CYSHN at the MDPH, effective December 2016 after the project ended.

3. Thanks to our Project Team! UMass Medical School – E.K. Shriver Center • Project Advisory Board • 2 LEND programs (UMMS & UMB) • BUSPH MCH Program • Boston Public Health Commission • Federation for Children with Special Needs • MA Developmental Disabilities Council • State agencies: BTP, EEC, EOHHS, DDS, DESE, DPH, MassHealth • Self advocates Project Team • Elaine M. Gabovitch, MPA • Shriver Center LEND Program • Massachusetts Act Early Program • Emily Lauer, MPH • Courtney Dutra, MPA • Center for Developmental Disability Evaluation & Research (CDDER)

4. Project Overview Three project goals Conduct needs assessment; Refine state plan in comprehensive report; Outline future surveillance to monitor and report on state ASD/DD activities and outcomes.

5. Areas of Focus • Focus on underserved children & youth • Race • Culture • Language • Region • Function • Behavioral health Six MCHB core outcome indicators Early Identification Medical Home Access to Care Family Involvement Transition to Adulthood Insurance PLUSPopulation, Education, Housing & Cultural Considerations

6. Methods • Qualitative • Twelve, 90-minute focus groups • 78 participants • 5 regions • Providers/parent leaders • Cultural communities • Five interviews with autistic adult self-advocates Quantitative • 50 key informant interviews • National surveys, local surveys, & aggregated state reports • NSCH & NS-CYSHCN • Our own surveys • Pediatric Provider Survey (2013) • Wait Time Survey (2015) • Assessed via descriptive statistics

7. Data Mapping and Analysis Process Exploration of all available data sources Systematic review of data sources and ability to inform measures Measures and best sources of information to be prioritized after review Pursue collection of information Identify gaps in important information

8. Process: Focus Groups

9. Report Format (290+ pages) • Core outcome indicator • Background • Summary of state environment • Identified needs: quantitative & qualitative findings • Future possibilities • Resources • Recommendations • Appendices

10. The Critical Use of Language The Language of Identity: Identity-first versus Person-first language The Language of Neurodiversity: ASD versus Autistic

11. Healthy People 2020 Six Core Outcome Indicators

12. Population Statistics: All Children • 6.7 million Massachusetts residents • 1.4 million children & youth under age 18 (367K under age 5) • Child population by race/ethnicity: • White, 64%; Hispanic, 17%; Black, 8%; Other, 7%; 2 or more races, 4% • Child population in poverty: • 0-5, 17%; 6-17, 14%; 18-24, 19% • Berkshire, Hampden & Suffolk counties greatest % • Children without insurance 2015: • 16,000 MA (0.1%); 4.4 million U.S. (6%)

13. Population Statistics: Children with Disabilities & SHCN

14. Population Statistics: Recommendations • Propose Massachusetts to be a CDC ADDM network surveillance monitoring site, or consider similar methodology leveraging the state’s advanced healthcare-related information sources. • Monitor state data trends using future versions of the NSCH, potentially with support to enhance the state-specific sample size, or develop a similar survey for Massachusetts. • Share Massachusetts Core Outcome Indicator Data online (e.g., Vermont Dashboard)

15. Indicator #1: Early Identification: Screening Indicator: Increase the proportion of young children with ASD and other developmental delays who are screened, evaluated, and enrolled in special services in a timely manner. • Screened for ASD & developmental delays (age 10-35 months) • First evaluation by 36 months of age • Enrolled in specialty services by 48 months of age

16. Highlighted Quantitative Findings: Early Identification National survey results (NSCH & NS-CSHCN): • Asked about developmental concerns by pediatrician • Asked to fill out developmental screening tool • Reported age at diagnosis with ASD CBHI: a powerful model for diagnostic systems change • Kuhlthau et al., 2011 • Hacker et al., 2014 • Savageau et al., 2016 Promising developmental screening programs • Race to the Top-Early Learning Challenge • Thrive in 5/Screen to Succeed

17. Highlighted Quantitative Findings: Early Identification Source: Manning et al, 2011

18. Highlighted Qualitative Findings: Early Identification Focus Groups Barriers to Screening • Lack of awareness • Difficulty in completing screening tools • Difficulty in scheduling or attending Dx appointments • Language or cultural barriers • A preference to “wait & see” • Cultural norms • Intervention • Parents may not follow up with EI post-Dx • Large caseloads for autism specialists • Challenging transition from EI to public schools Screening • Requests from early childhood professionals to participate in screening • Translated tools needed for non-English speaking families Diagnosis • Over-diagnosis concerns • Hesitancy by clinicians to diagnose • Incorrect diagnoses leading to potential racial stigmatization • High functioning children referred and diagnosed late

19. Early Identification: Recommendations • Set early identification targets and monitor progress on an annual basis. • Examine methods used by MassHealth review studies for feasibility and possible replication. • Use both Early Intervention data (Part C) and school data (Part B) to monitor early identification. • Build and monitor early identification workforce capacity and development. • Prioritize monitoring and addressing identified racial/ethnic disparities in early identification.

20. Indicator #2: Medical Home Indicator: Increase the proportion of children with special health care needs wit ASD who have access to a medical home Finding Highlights: • Most families have usual source of care, but need care-coordination & family-centered care.

21. Medical home:Recommendations Set medical home targets and monitor progress on an annual basis. Obtain a larger data sample related to the medical home needs of CYSHCN with ASD. Obtain data to measure and monitor in-hospital utilization trends. Build and monitor medical home workforce capacity and development.

22. Indicator #3: Accessible community-based service system Indicator: • Increase the proportion of children with special health care needs who receive their care in family-centered, comprehensive, and coordinated systems. • Birth to 11 • 12 to 17 Finding Highlights: Few quantitative measures exist. Great needs: Medicaid acceptance, workforce capacity, trained ABA therapists, regional/transportation needs, poverty, etc.

23. Accessible community-based system:Recommendations Obtain data to measure and monitor access to care. Obtain a larger data sample for national survey questions related to access to care for CYSHCN with autism. Set access to care targets and monitor progress on an annual basis. Build and monitor workforce capacity and development for access to community-based systems. Educate parents about navigating and accessing support systems.

24. Indicator #4: Family Involvement Indicator: Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive. Findings Highlights: Family engagement opportunities exist Self-advocates need more.

25. Family Involvement:Recommendations Set family involvement targets and monitor progress on an annual basis. Obtain a larger data sample related to national survey questions related to family involvement. Build and monitor family & self-advocate workforce capacity and development.

26. Indicator #5a: Transition to Adult Health Care Indicator: Increase the proportion of youth with special health care needs whose health care provider has discussed transition planning from pediatric to adult health care. Findings Highlights: • Great need for access, navigating adult healthcare & more providers.

27. Transition to Adult Health Care:Recommendations Set health care transition targets and monitor progress on an annual basis. Obtain a larger data sample for national survey questions related to health care transition for autistic YSHCN. Build and monitor workforce capacity and development for health care transition. Educate transition age youth and families about health care transition. Increase efforts to support and incentivize adult health care providers to accept young adults as patients. Consider efforts to track provider network capacity for adults with developmental and intellectual disabilities. Improve long-term planning for health care transition and the use of evidence-based guides and models.

28. Indicator #5b: Transition to Adult Life Indicator: Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. Findings Highlights: State progress being made due to legislation, measures needed.

29. Transition to Adult Life:Recommendations • Set transition to adulthood targets and monitor progress on an annual basis. • Use emerging state electronic data resources and other models to gather more information about transition to adulthood for autistic youth. • Build and monitor workforce capacity and development for transition to adult life. • Educate youth and parents about transition to adult life. • Form a statewide transition coalition to minimize silos between services and to foster a learning community to improve services.

30. Indicator #6: Adequate Private &/or Public Insurance to Pay for Services Indicator: • Adequate private and/or public insurance to pay for the services that children and youth with ASD and DD need Findings Highlights: • Need to understand the % of children NOT covered.

31. Insurance:Recommendations Set insurance targets and monitor progress on an annual basis. Leverage existing electronic resources and/or obtain a data sample related to insurance coverage and network adequacy. Build and monitor workforce capacity and development for insurance.

32. Supplemental Report Findings

33. Education Findings Highlights: Needs around language & translation. Recommendations: • Set education targets and monitor progress on an annual basis. • Measure, monitor and address cultural equity for translated special education documents and communications with families.

34. Housing & Homelessness Findings Highlights: Need for executive function support to avoid homelessness. More data needed Recommendations: Set housing and homelessness targets and monitor progress on an annual basis. Build and monitor workforce capacity and development. Consider researching and investing in promising new housing models for families of children of youth with autism, as well as adults with autism.

35. Cultural Considerations Findings Highlights: Need for services, trusted providers, community education. Recommendations: Set targets for reduction of cultural disparities and monitor progress on an annual basis. Build and monitor workforce capacity and development. Address related issues for cultural and linguistic access.

36. Lessons learned • Qualitative data • Fills gaps & points out emerging trends • Focus groups and key informant interviews provide rich insights • Self-advocates are essential to give meaning to Transition • Professional groups need to be topic-focused • Multi-cultural parent groups gave insights that allowed us to add & change topics • Need to provide stipends, childcare, transportation, culturally appropriate interpreters • The importance of the Project Advisory Board • The importance of the Autism Commission • Need for centralized entity to monitor processes • Legislation may be needed • Quantitative data • CAHMI data fills in where state data may not exist with important limitations • Long-standing state data systems need to be upgraded & re-aligned • Claims data does not specify screening type

37. Overarching recommendations (also by indicator) • Set state relevant targets & monitor progress • Obtain large data sets to better understand needs & inform planning • Consider conducting Massachusetts survey similar to national surveys to increase #’s • Investigate linking state databases, particularly emerging ones • Build and monitor workforce capacity, training and development. • Monitor # pediatric & specialty physicians for capacity building • Invest in workforce development to increase # trained professionals across indicators • Prioritize understanding racial, cultural and regional disparities. • Share Massachusetts MCHB Core Outcome Indicator Data online with the public. • Employ innovative practices to approaching data collection and analysis. • Fully engage community organizations, families and self-advocates • Review the intersection of government and university research • Invite other states to share promising practices • Conduct focus groups to monitor public response.

38. Final outcomes MA Healthy People 2020 State Autism Roadmap report posted online & via email Dec. 2016 Shared findings with MA Autism Commission Data Subcommittee on January 2017 and continue to work on future actions based on report recommendations Currently fielding calls from advocates who wish to use findings Ongoing public engagements and dissemination opportunities

39. Thanks to our Project Advisory Board Members • Cynthia Miller, Massachusetts EOHHS Bureau Transition Planning • Tracy Osbahr, former Massachusetts Department of Public Health Office of Specialty Services (past advisor, now retired) • Chris Pond, Massachusetts Department of Early Education and Care • Joan Rafferty, Massachusetts Department of Public Health Early Intervention Program • Richard Robison, Federation for Children with Special Needs • Diana Santiago, former Boston Public Health Commission (past advisor) • Jason Travers, former University of Massachusetts Amherst School of Education (past advisor) • Amy Weinstock, Autism Insurance Resource Center, UMASS Medical School-Shriver Center • Michael Forbes Wilcox, former member Massachusetts Special Commission Relative to Autism • Deborah Allen, Boston Public Health Commission • Faith Behum, former Massachusetts Developmental Disabilities Council • Kathleen Braden, former UMASS Medical School-Shriver Center LEND Program (now retired) • Roula Choueiri, UMASS Medical School Division of Neurodevelopmental Pediatrics, • Rosalie Edes, former Massachusetts Executive Office of Health & Human Services (EOHHS) • Mary-Ellen Efferen, former Massachusetts Department of Elementary and Secondary Education Tiered System of Support (now retired consultant) • Emily Feinberg, Boston University School of Public Health & School of Medicine • Cariann Harsh, former Massachusetts Department of Developmental Services Autism Division • David Helm, Children’s Hospital of Boston/ICI LEND Program • Carolyn Langer, Massachusetts Office of Medicaid (MassHealth)

40. Thank you! Report available at: www.maactearly.org www.shriver.umassmed.edu/research For more information, please contact : Elaine.Gabovitch@umassmed.edu