Act Early State Plan and Activities

Gail Chodron presenting

on behalf of the Wisconsin Act Early State Team

Minnesota Act Early Summit

November 9, 2012

Outline

• Context and development of the Wisconsin Act Early State Plan

• Spotlight several key activities completed related to early identification, screening, and use of Act Early materials

• Describe challenges faced, factors contributing to success, and lessons learned

Wisconsin 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)

1Source U.S. Census Bureau: State and County QuickFacts (http://quickfacts.census.gov/qfd/states/55000.html)

State of Wisconsin Blue Book 2003-2004: http://legis.wisconsin.gov/lrb/bb/03bb

Largest ethnic minority group by county for 5 counties with highest overall % ethnic minority population: Sawyer County • >16% Amer. Indian/Alaskan Nat. Forest • >11% Amer. Indian/Alaskan Nat. Menominee • >87% Amer. Indian/Alaskan Nat. Milwaukee • >24% African American Racine • >10% African American

State of Wisconsin Blue Book 2003-2004: http://legis.wisconsin.gov/lrb/bb/03bb

Children and Youth with Special Health Care Needs (CYSHCN)

• 15.5% of children (201,529) 1

• living below FPL: 17.2% of CYSHCN1

• 5 Regional Centers for Children and Youth with Special Health Care Needs

• Wisconsin First Step-MCH hotline & online database

12009/10 National Survey of Children with Special Health Care Nee www.childhealthdata.org/browse/snapshots/cshcn-profiles?rpt=9&geo=51#)

Children and Youth with Special Health Care Needs (CYSHCN)

• CYSHCN: 15.5% of children (201,529) 1

• CYSHCN living below FPL: 17.2% of CYSHCN1

• Prevalence of ASD: 1 in 1292

• Special Education: leveling off at >1%3

12009/10 National Survey of Children with Special Health Care Nee www.childhealthdata.org/browse/snapshots/cshcn-profiles?rpt=9&geo=51#) 2Data Source: WISADDS 2008 data year (https://www.waisman.wisc.edu/wisadds/assets/Wisconsin.pdf) 3Source Maenner & Durkin 2010 in Pediatrics (Oct 25): www.waisman.wisc.edu/news/docs/maenner_durkin_pediatrics_2010.pdf

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2002 2004 2006 2008

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Surveillance Year

Overall ASD Prevalence

All ADDM Sites

WISADDS Prevalence

Special Education Enrollment by Autism 2002 - 2012

http://data.dpi.state.wi.us/

Elementary Spec Ed Enrollment

www.waisman.wisc.edu/news/durkin9.html

Screening and Early Identification

• Increasing rate of developmental screening using a validated tool in well child visits

• Median age of earliest ASD diagnosis at 53 months, while 88% had a documented developmental concern before age 12 months.1

• Lower documentation of autism concern or diagnosis among black and Hispanic children2 – White: 8.6 per 1000

– Black: 5 per 1000

– Hispanic: 3.8 per 1000

1MMWR Surveill Summ. 2009; 58(SS-10)

2Data Source: WISADDS 2008 data year (https://www.waisman.wisc.edu/wisadds/assets/Wisconsin.pdf)

Access to Intervention and Therapy

• Wisconsin Birth to 3 Program – Does not require diagnosis

– Early developmental surveillance and screening important to get children into early intervention

– Barriers to referral have been mentioned by some physicians

– Does not provide diagnosis

– Because of average age of identification of autism, many children with ASD miss Birth to 3

Access to Intervention and Therapy • 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

– County administered – Regional variation, including rural and urban – Language barriers – Waiver and/or insurance coverage

Access to Intervention and Therapy

• Diagnosis is required for therapy through waiver or private health insurance mandate

• Requirements for a diagnosis for each are slightly different (for more info, see: http://dhsmedia.wi.gov/main/Viewer/?peid=0f7cdb0d9aac4bb085059e29363a7a231d)

Development of the State Plan

2007 2010

1 Early Identification & Screening

1 Early Identification and Referrals B-3, 3-5

2 Assessment, Evaluation & Diagnosis

2 Intervention Services Based on Best Evidence

3 Intervention & Treatment

4 Supports for Families

3 Communication, Collaboration, Integration

5 Systems Coordination

Major Activities to Address 2007 Goals

2007 1 - Primary Care Provider training

- Medical Home and developmental screening - Integrated Management Team

2 - National Professional Development Center-Autism - Professional development - State planning and models sites - Interagency Planning Group

3 - Development of Medical Home Autism Connections Initiative (CAAI Autism State Implementation Grant) - CYSHCN/UCEDD and steering committee

Wisconsin Act Early State Plan

Key Partnerships

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 Groups: 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

Highlights of Efforts Related to Early Identification and Screening

2007 2010

1 Early Identification & Screening

1 Early Identification and Referrals B-3, 3-5

2 Assessment, Evaluation & Diagnosis

2 Intervention Services Based on Best Evidence

3 Intervention & Treatment

4 Supports for Families

3 Communication, Collaboration, Integration

5 Systems Coordination

Activity Spotlight #1: Developmental Screening & Referral in Primary Care

• UCEDD and CYSHCN Program and an Integrated Management Team

• Common set of goals, various funding sources

• Activity development over time – Practice-based training and technical assistance

– Train the Trainer

– Network-based quality improvement

– Integration of Act Early materials

• Surveying needs and supporting pilot study

2007 Survey Results – Types of developmental screening in the health care provider’s office in Wisconsin

2007 Developmental Screening Pilot Project

http://www.waisman.wisc.edu/cshcn/pdfs/summit/DevelopScreeningProject.pdf

Online Training www.waisman.wisc.edu/connections/webcast.php

Activity Spotlight #1: Factors Contributing to Success

• Collaboration and coordination

• Responding to identified need

• Including local partners: Regional Center for CYSHCN, local Birth to 3

• Focus on team work flow and implementation

• Tool selection and provision (ASQ, MCHAT)

• Technical assistance

• Agreements to foster change

• Champions and spread: Trainers, networks, webcasts

Activity Spotlight #2: Community Implementation and Policy Impacts

• Healthy Children Committee brought public health partners with early childhood partners

• Integrated Act Early Wisconsin into early identification and screening website and resources

• Model Cross-Sector Screening and Assessment Periodicity Schedule

• Community toolkit, tip sheets, and webinar series • Blueprint for Comprehensive and Aligned System for

Screening and Assessment of Young Children • Serves as Screening and Assessment Project Team on

Governors Early Childhood Advisory Committee • Cross-sector coordination, consistency of message, and

policy impact

Activity Spotlight #2: Successes and Impacts

Cross Department Staff Team & Committee Liaisons

Families&

Communities

Health&

Safety

Quality Early

Learning

ProjectTeam:

Family &Community

Partnerships

Project Team:

Professional Development

Initiative

Public PrivateData AlignmentComprehensiveScreening and

AssessmentSystem

Project Team:

Screening &Assessment

Project Team:EC-LDS

Project Team:Public-Private

Partnership

WI Structure for Early Learning and DevelopmentProject teams aligned with ECAC system development& 3 focus areas with SC staff serving as liaisons.

ECAC Steering Committee

ProjectTeam:Obesity

Prevention

Project Team:

PreventiveOral Health

*The Wisconsin Early Childhood Collaborating Partners Action Teams have been folded into to this structure.

*Outside Individuals/Groups have an opportunity to participate in a project by indicating interest to the SC member chair or the project team leader.

ECAC Systems

Focus Areas

Activity Spotlight #3: Using the Act Early Materials

• Began with “Learn the Signs. Act Early.” as natural fit for several projects

• Activity development over time: – Dissemination to providers and families

– Customization to address local needs

– Expansion of local ownership: “Act Early Wisconsin”

– Integration and sustainability

• Act Early Ambassador and Act Early State Team

• Surveying needs, piloting implementation, sharing lessons learned

Materials Customization and Dissemination

• Partners valued the resources, but wanted to feel they were using home grown resources

• Need to connect families to Wisconsin resources and referral system

• High demand across primary care, home visiting, and early childhood

www.ActEarly.wisc.edu

Activity Spotlight #3: Lessons Learned

• High demand for “local” customized materials, as well as quality parent-friendly materials on developmental milestones

• Difficult to keep up with demand without funding, staffing, and sustainability plan

• Partnering to purchase reduced costs considerably

• AMCHP State Systems Grant • Need to increase early identification

– Children with signs of ASD birth to 5 – “At-risk” and underserved families – Birth to 3 referrals among children birth to 12 months

• MIECHV Home Visiting Programs (DCF) and Prenatal Care Coordinators (DHS) chosen: – Statewide programs with centralized administration – Serve combined total of approx. 10,000 families/year – Use the Public Health data collection system – Conducive to integrating into provider trainings – Capacity and commitment to sustainability

Activity Spotlight #4: Integrating Act Early into Public Health Programs

Integration into Home Visiting and Prenatal Care Coordination Programs

• Conducted training and TA needs assessment – Focus group with home visiting providers

– Online survey on PNCC program providers, providers’ supervisors, and program managers

• Developed training materials and TA process – Integration into key provider trainings

– Stand alone information

• Piloting integration of materials in English and Spanish – Milestone Moments

– Growth Chart

• Final survey being completed by PNCC

Activity Spotlight #4: Successes and Challenges

• Understanding which materials parents will keep

• Data collection remains a challenge

• Need for materials in Hmong

• Preliminary evaluation results: – Materials support conversations with families about child

development and developmental concerns

– Milestone Moments most valued, then Growth Chart

– Little perceived impact on referrals

• Fairly easy, inexpensive way to meet high perceived need

Natural Expansion and Sustainability

• Programs developing own mechanisms for training, TA, funding, and materials dissemination

• Key coordinating roles continue: – Act Early Ambassador provides technical assistance

– WECCP leads on early identification & screening goal

– Act Early State Team coordinates across goals

• Recent expansion: – Home Visiting programs in Public Health Depts

– Youngstar (early childhood improvement system) Model Early Learning Standards trainings

– WIC

Others Using Act Early in Wisconsin

• Head Start / Early Head Start

• Project LAUNCH

• Regional Centers for Children and Youth with Special Health Care Needs

• Primary Care Providers

• Autism Society

• Wisconsin Birth to 3 Program

• Child Find

• UW Extension trainers

• Child care sites

Resources: • Waisman Center UCEDD:

www.waisman.wisc.edu/cedd

• National Medical Home Autism Initiative: www.waisman.wisc.edu/nmhai

• Wisconsin Surveillance of Autism and Other Developmental Disabilities: www.waisman.wisc.edu/wisadds

• National Professional Development Center on Autism Spectrum Disorders: www.waisman.wisc.edu/autismpdc

• Developmental Delays and Disabilities Screening and Referral Project: www.waisman.wisc.edu/cshcn/pdfs/Project.3D.final.report.6.29.2011.pdf

• Act Early Wisconsin: www.ActEarly.wisc.edu

Resources: • Wisconsin Children and Youth with Special Health Care Needs

Program: www.dhs.wisconsin.gov/health/children

• Connections Initiative (Autism State Systems Grant project) www.waisman.wisc.edu/connections.php

• Wisconsin Medical Home Webcast Series: www.waisman.wisc.edu/connections/webcast.php

• Wisconsin’s Autism Insurance Mandate http://oci.wi.gov/rules/faq_autism.pdf

• Wisconsin Early Childhood Collaborating Partners: www.collaboratingpartners.com/screening-early-identification-index.php

• Blueprint for a Comprehensive and Aligned System for Screening and Assessment of Young Children http://dcf.wi.gov/ecac/pdf/22112_blueprint.pdf

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 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