Autism in Massachusetts: A look at the population, current services, new opportunities, & ongoing challenges

1. Autism in Massachusetts:A look at the population, current services, new opportunities, & ongoing challenges October 25, 2010 Jean Flatley McGuire, PhD Assistant Secretary

2. Presentation Summary Disability Policy at EOHHS Defining Need & Eligibility A Look at Current EOHHS Services Future Directions

3. Disability Policy at EOHHS • Community First (Olmstead Plan) • Lifespan • Functionally-oriented • Comprehensive • Independent living • Employment • Transportation • Housing • Choice

4. Challenges to Achieving the CommunityFirst Vision • Categorical Funding; Diagnosis & Disability-based Entitlements • Lack of functional basis for eligibility determination • Institutional Silos • Uncertainty of therapeutic efficacy of certain interventions • Disagreements between disciplines • Institutional bias in long term support funding • Limited private sector financing • The current economy

5. Diagnostic Criteria for Pervasive Developmental Disorder (PDD) PDD(DSM-IV-TR)is an umbrella term and includes: Autism Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) Asperger’s Syndrome Childhood Disintegrative Disorder Rett’s Syndrome

6. Prevalence of Autism – National Data CDC 2007: 1/150 (2-6 per 1,000) 57% increase CDC 2009: 1/110

7. Other CDC National Findings All racial, ethnic groups are affected Boys are 4 – 5x more likely than girls Approximately 50% are diagnosed as PDD-NOS Between 30 – 51% (average 41%) have an Intellectual Disability (IQ≤70) Prevalence in siblings varies Identical twins: 60-96% Non-identical twins: up to 24% Other siblings: 2 – 8% (Source: http://www.cdc.gov/ncbddd/autism/facts.html)

8. Massachusetts Prevalence Early Intervention Data Higher Prevalence than National Average & Growing 56 PER 10,000 - 2001 BIRTH COHORT 93 PER 10,000 - 2005 BIRTH COHORT *************** 1:108 Children

9. Massachusetts Child Count – 2008- 09

10. Autism in MA Schools Department of Elementary & Secondary Education (DESE) Reports: 2002/3 to 2008/9 Prevalence more than doubled: 4,000 10,000 Students with autism accounted for 70% of the total increase in Special Education students 2008-2009 cohort of 9,829 aged 3 -21 5.8% of the 168,497 reported “children with disabilities” 2008/9: 1:90 children across all grades & ages 3 – 22 Source: Reported by the Commonwealth of Massachusetts, Early Intervention Services and the Dept of Elementary & Secondary Education ; also see http://www.doe.mass.edu/infoservices

11. EOHHS Agencies Serving Children & Adults with ASD MassHealth (Medicaid) Department of Public Health (DPH - Early Intervention) Department of Developmental Services (DDS) Massachusetts Rehabilitation Commission (MRC) Mass Commission for the Deaf & Hard of Hearing (MCDHH) Massachusetts Commission for the Blind (MCB)

12. MassHealth Over 1M children and adult members Comprehensive health insurance or help in paying for private health insurance Many disability-related and long term care services Types of services for ASD population: Evaluation and diagnosis by a developmental pediatrician Occupational therapy; speech & language therapy Intensive Case Management Transportation to medical services Behavioral health services for co-occurring BH conditions Personal Care Attendant services Adult foster care Residential, family support & other community care services (predominantly through DDS waivers)

13. Early Intervention Specialty Services (DPH / MassHealth) Birth – 3 years 1,321 with diagnosis on autism spectrum served in FY’09 Diagnosis of ASD by physician/clinical psychologist Average Age of Dx: 25.4 months Highly structured, individualized intensive specialty services Tailored to the needs of the child & the family

14. Early Intervention – Additional Services • Speech/Language Therapy • Occupational Therapy • Developmental Specialist • Toddler Group • Parent Group

15. Department of Developmental Services: ASD Services • Goals • To promote & support families’ ability to maintain family member at home • To provide information, referral and specialized programs • To provide specialized service to address core symptoms of autism • To provide integrated services for adults

16. DDS ASD Services • Children’s Services • Family Support Centers – Statewide • Culturally Diverse Family Support Centers – Statewide • Autism Support Centers – Statewide • Autism Waiver • DESE-DDS Program • Adult Services • Residential • Day • Transportation • Support Services

17. DDS - Autism Services Waiver Initiated: October 2007; 5 year Renewal: October 2010 Services 1:1 behavioral, social & communication interventions through Expanded Educational Habilitation Services: 4 – 8 hours per week Community integration activities, respite, family training Home & vehicle modification Expanded Educational Habilitation Services limited to 3 years or until age 9; ancillary supports available until age 9 Autism Support Centers & Support Brokers New as of October 2010: OT, PT, Speech Therapy & Behavioral Supports & consultation Participant Directed Service model Number Served 130/year  170/year (unduplicated count)

18. Additional Support for Families (DDS) 7 Regional Autism Support Centers Social Skills and Sensory Based Programs, Vacation Programs, Family Training, Sibling Support Groups New service addition: small group family clinics More than 5,000 children & families annually Information & Referral ~ 6000 calls/yr

19. Adult Services (DDS) Eligibility: Intellectual Disability Need co-occurring Intellectual Disability & ASD Services Residential: primary approach: naturalistic teaching and positive behavioral supports Some specialized programs with more vigorously designed environments & behavioral approaches (e.g. ABA, Higashi) Day and employment service More intensive staffing & focused individualized planning process Individual supports and variety of other support services, such as speech, occupational & physical therapies and behavioral supports & consultation

20. Massachusetts Rehabilitation Commission MRC is the vocational rehabilitation and independent living supports agency for adults with disabilities Vocational Rehabilitation FY09: Served 755 Consumers with a primary or secondary diagnosis of ASD Average tenure in program: 3yrs Services: career counseling and assessment short term skills training & vocational training programs support for post-secondary education job search & placement assistance post-employment supports Independent Living Supports Independent Living Centers Assistive Technology

21. Specialized Services & Supports: MCDHH & MCB For Children with ASD and who are deaf or hard of hearing and/or blind: Information & Referral Parent Training Collaborative Case Management

22. Emerging Opportunities • DDS Developments: Expansion of Autism Waiver; Self-direction & other Service Changes in Adult Waivers • 2009 Mental Health Parity amendments (autism) • “Coverage of medically necessary inpatient, intermediate and outpatient mental health services, provided in the least restrictive clinically appropriate setting.” Includes certain clinical assessment, diagnosis, counseling & other interventions, not inclusive of ABA or educational services. • 2010 Autism Insurance Legislation (ARICA) • Requires health insurers in Massachusetts to provide coverage for the diagnosis and treatment of Autism Spectrum Disorder • Guidance under development (DOI) • Establishment of the Autism Commission • New MassHealth EI coverage requirements

23. Moving Forward: Addressing the Challenges • Clarifying Gaps in Services • Clarifying effective interventions across the lifespan & differential disability • Assuring integrated strategies • Behavioral, developmental, habilitative, pharmacologic, other medical, educational, vocational, independent living • Identifying financing options, including public-private • Developing transition & adult services, especially for higher functioning & “agency-of-no-tie” individuals