State of the State. Massachusetts 2010

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1 State of the State Massachusetts 2010

2 Child Count Massachusetts AGES Children with Autism in Massachusetts Children with Autism in Massachusetts yrs 231 1, yrs 290 3, yrs 191 2,604 *compiled by MA DESE, in accordance with Section 618 of IDEA, to U.S. DOE, Department of Special Education

3 Autism Statistics, MA DPH Average age of Diagnosis: 25.4 months Number of Children served by the Specialty Services System in FY 09: 1321 Incidence of identification of ASD in 2006 birth cohort: 1/108 (provided by Tracy Osbahr, M.A., CCC-SLP, Director, Office of Specialty Services, Department of Public Health)

4 Demographics: In 2000, 806 or 0.50% of children ages 3-21 who received special education services had autism. In , 8,699 or 5.77% of children with disabilities ages 3-21 who received special education services had autism. Source: Reported by the Commonwealth of Massachusetts in accordance with Section 618 of IDEA to U.S. DOE, Office of Special Education Programs. Autism Prevalence Rates in Massachusetts

5 Early Intervention Services Early Intervention Services are provided by certified private agencies divided by 39 catchment areas across the state. A list of the agencies is available to professionals and families on the Massachusetts Family TIES website at or ( TIES) Referrals are made by any responsible individuals including parents, doctors, caregivers, social workers or friends. If qualified, service is mandated to begin within 45 days of referral.

6 Early Intervention Eligibility and Supports As of January 1, 2009, eligibility criteria changed. A child must show a 30% level of delay (based on the Early Intervention Developmental Profile Michigan or 1.5 standard deviations based on the Batelle Developmental Inventory) As of January 1, 2009, a confirmed diagnosis of autism spectrum disorder is required to be eligible for autism specialty service programs. A child with a diagnosis does not need to meet DD requirements above. Early Intervention agencies provide parent training programs and parental support. The Early Intervention Parent Leadership Project adds parent input statewide.

7 Department of Developmental Services Autism Division Created in fiscal year 2006 with a $1.2 million dollar allocation, funding was to be used for the contracting of support services for families with autistic children through the Autism Division of DDS. The creation was heavily lobbied by parent and advocacy groups such as AFAM, Mass Advocates for Children, the Federation for Children with Special Needs and the ARC of Massachusetts to bridge the gap between children with a singular autism diagnosis, and those already serviced by DDS having a dual diagnosis including a qualifying IQ score. Appropriations created additional staffing capacity in the seven state funded autism support centers to provide families with information, referral, resources and trainings. Funding also included the creation of social skills, sensory and vacation programs at each center.

8 Seven State-Funded Autism Support Centers Autism Alliance of MetroWest Autism Resource Center (central MA) The Autism Support Center (Northeast) www2.shore.net/~nsarc/home.htm Community Autism Resources (Southeast) Community Resources for People with Autism (Western) TILL: Autism Support Center (Greater Boston) The Family Autism Center (Norfolk County, SW)

9 Further Advocacy and Support Autism Speaks, Autism Society of America, MA chapter, Autism Project, Mass Advocates for Children, Advocates for Autism of Massachusetts, (AFAM) Aspergers Association of New England, AANE.org Doug Flutie Jr Foundation for Autism,

10 Autism Home and Community Based Service Waivers In 2008, the Autism Division with MassHealth created the Autism Services Waiver for children who qualify for MassHealth Standard under the age of 9. To ensure the application process was fully accessible to families from linguistically and culturally diverse backgrounds, the program eligibility forms were made available in multiple languages. The DDS-DESE waiver is for children at risk for residential school placement, to provide community supports to remain at home.

11 Diagnosis and Evaluations Childrens Hospital Boston, Developmental Medicine Center. Boston, MA or Waltham, MA Center for Children with Special Needs, Floating Hospital for Children at Tufts Medical Center. Boston, MA Lurie Family Autism Center, LADDERS Wellesley MA, UMASS Memorial Medical Center. Early Childhood Clinic Worcester, MA Boston Medical Center, Pediatrics- Neurology, The Autism Center, Boston, MA Baystate Pediatric Neurology, Springfield, MA Center for Child and Adolescent Development, Cambridge Health Alliance, Medford, MA Child Development Network, LLC, Lexington, MA The Developmental Collaborative Neuropsychology and Education Services for Children and Adolescents, Newton, MA Integrated Center for Child Development, Canton or Newton, MA National Autism Center, Randolph, MA North Shore Neuropsychological Services, Marblehead, MA Schwartz Center for Children, Dartmouth, MA, (not an exhaustive list, but an attempt to list the major centers)

12 Research and Outreach Two UCEDD/ LEND programs: Children s Hospital Boston /ICI and UMass Medical School/ Eunice Kennedy Shriver Center Autism Research Center of Excellence - Boston University Autism Treatment Network Collaborative Programs of Excellence in Autism (CPEA) Family-School Autism Project at UMASS Boston Studies to Advance Autism Research and Treatment (STAART) National Autism Center - Autism Treatment Standards The Autism Consortium

13 Community Initiatives Pediatrician Awareness Project funded by DDS: A team of developmental pediatricians and neurologists from multiple university centers to educate general pediatricians in developmental screening tools including the MCHAT screen through community based and web based trainings. Participating centers include Children s Hospital Boston, UMass Medical Center, Tuft s Floating Hospital for Children and Boston Medical Center Autism Law Enforcement and Education Coalition (ALEC) trains local police, fire, EMT s and hospital personnel in working with individuals with autism in the event of emergency. Asperger s Association of New England Outreach Project: providing written literature in English and Spanish reaching out to the Hispanic community in Boston, Lowell/Lawrence and Springfield.

14 State Legislation House Bill #3809, An Act Relative to Insurance Coverage for Autism (ARICA): Actuarial assessment published for the Division of Health Care Finance and Policy in March Bill remains in Committee. House Bill #153, An Act to Support and Increase the Number of Qualified Providers of Intensive Intervention Providers for Children with Autism Spectrum Disorders. House Bill #155, An Act Establishing an Autism Commission. Currently there is no specific council in Massachusetts, although the Governor-appointed Massachusetts Developmental Disability Council has representation from family members and self advocates with autism.

15 Current Challenges and Gaps Lack of centralized resource system and resource coordination. Often resources are duplicated or omitted by multiple agencies. Long waiting lists for diagnostic evaluations, often months or longer. Specialty services unavailable without diagnosis. Diagnostic centers centralized in metropolitan areas creating geographical disparities. Independent diagnostic evaluations can be costly creating economic disparities. Access to services requires exhaustive advocacy from parents and caregivers creating linguistic, cultural and educational disparities.

16 Current Challenges and Gaps Continued Current economic trends have created shortfalls in funding. Respite funding for families has been completely depleted. Continued research is needed in evidence-based treatments, creating more congruent recommendations for family and caregivers. Educational shortfalls in the community as a whole that would foster true inclusion. Attempts to organize local autism efforts have included the RADAR Coalition in 2002, DPH meetings in 2008, and Mayor Menino s Autism Summit in 2009, among others.

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