Wisconsin Great Lakes LEND Collaboration Focus on Autism October 4, 2012
Demographics • Population estimate (2011): 1 5,711,767 – Children under 18 yrs: 1,325,129 (23.2%) • Ethnicity – White—not Hispanic: 83.1% – Black: 6.5% – Hispanic: 6.1% – Asian: 2.4% – American Indian: 1.1% • Poverty – Persons living below FPL: 11.6% – Children living below FPL: 18.8% (248,924) 1 Source U.S. Census Bureau: State and County QuickFacts (http://quickfacts.census.gov/qfd/states/55000.html)
Children and Youth with Special Health Care Needs (CYSHCN) • CYSHCN: 15.5% of children (201,529) • CYSHCN living below FPL: 17.2% of CYSHCN 2 • Prevalence of ASD: Overall ASD Prevalence 1 in 129 3 12 All ADDM Sites 10 Prevalence per 1,000 children • Spec Educ.: 8 leveling off at >1% 4 WISADDS 6 Prevalence 4 2 0 2002 2004 2006 2008 Surveillance Year 1 2009/10 National Survey of Children with Special Health Care Nee www.childhealthdata.org/browse/snapshots/cshcn-profiles?rpt=9&geo=51#) 3 Data Source: WISADDS 2008 data year (https://www.waisman.wisc.edu/wisadds/assets/Wisconsin.pdf) 4 Source Maenner & Durkin 2010 in Pediatrics (Oct 25): www.waisman.wisc.edu/news/docs/maenner_durkin_pediatrics_2010.pdf
Relevant Data and Information • Children’s Long-Term Support Waiver covering intensive therapy for autism • Autism Insurance Mandate – first applied November 1, 2009 – coverage of at least $50,000 for intensive-level services per year for up to 4 years – coverage of at least $25,000 per year for non- intensive level services • Access to therapy varies – Region, including rural and urban – Language – County – Whether covered by mandate-covered health insurance
Relevant Data and Information • Early childhood focus among collaborating state partners • Variable access to diagnostic assessment • Regional Centers for Children and Youth with Special Health Care Needs • Wisconsin First Step-MCH hotline & online database
Autism State Plan Highlights • Five Goal Areas I. System of Early Identification and Referrals B-3, 3-5 II. Assessment, Evaluation and Diagnosis III. Intervention and Treatment IV. Supports for Families V. Overall Systems Coordination
Key Partners I. System of Early Identification and Referrals B-5 Lead Group: Healthy Children Committee of Wisconsin Early Childhood Collaborating Partners II. Assessment, Evaluation and Diagnosis Lead Group: UCEDD III. Intervention and Treatment Lead Group: Department of Public Instruction, Department of Health Services, UCEDD IV. Supports for Families Lead Group: Autism Society of Southeastern Wisconsin V. Overall Systems Coordination Lead Group: Title V CYSHCN
Accomplishments and Successes • Goal 5: – Collaboration – Coordinated with and extending existing work • Goal 1: – Act Early Wisconsin • Goal 2: – Progress on diagnostic training and best practice concensus
Accomplishments and Successes • Act Early Wisconsin – Customization – Common language • Collaboration – Apply for funds – Print materials
Accomplishments and Successes • Goal 2: – Autism Diagnostics Work Group (2010) • Autism diagnostics best practices guidelines development and dialogue – UCEDD trainings • ASD early identification and assessment • ADOS – Autism Diagnostics Forum (2012)
Challenges or Struggles • Team composition / turnover • Data collection • Balancing progress on goals (e.g., increased screening and capacity to meet diagnostic and intervention needs) • Urban and rural issues, cultural diversity
Next Steps/Future Plans • Reconvene the Act Early State Team, including new partners and agency/organization participants • Assess progress on goals, and identify priorities and opportunities for action • Webinar through Autism Diagnostics Forum on integration of diagnostic capacity into Group Health Cooperative SCW provider network
List of State Team Partners (2011) Team Member Agency/Organization Carrie Arneson WISADDS, UCEDD Chris Breunig , Arianna Keil NE CYSHCN Regional Center & Medical Home Hub Sharon Fleischfresser & Amy Whitehead Title V CYSHCN Anne Harris, Gail Chodron WI LEND, UCEDD Lilly Irvin-Vitela Supporting Families Together Brian Johnson (-> Daniel Parker) DPI Barbara Katz Family Voices of Wisconsin Emily Levine Autism Society of Southeastern Wisconsin Kim Liebhart LEND grad, DPI NE Regional Early Childhood Coach Mala Mathur Group Health Cooperative SCW, WI AAP Bill Murray, Terri Enters DHS Bureau of Long-Term Supports Dana Romary WI Birth to 3 Program Michelle Sherman Wisconsin Early Autism Project Linda Tuchman, Dan Bier UCEDD Michelle Urban Department of Children and Families
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