Access to Autism Information and Services in Wisconsin is
Enhanced by LEND Collaboration with State System Initiative
Anne Bradford Harris, PhD, MPH, RD; Gail Chodron, PhD; Kris Barnekow, PhD, OTR/L; Maureen Durkin, PhD, DrPH; Lynn Hrabik, MPH
Access to Autism Information
Ongoing dissemination of information
from the “Connections” project
• Community of Practice on Autism
Spectrum Disorders and other
Developmental Disabilities Led by
a Steering Team with 3 co-chairs
(supported by LEND and parents from
WI autism societies), the Community of
Practice on ASD/DD provides three training
events per year open to professionals (clinicians,
researchers, educators) and families/individuals with ASD/DD.
Attendance ranges from 60 to 600 people for each event
with larger numbers for the distance event scheduled each
year in mid-winter.
• “Finding Your Way – a Navigation
Guide for families …” developed in
2011 and revised in 2017 continues
to be distributed in English and
Spanish through the CYSHCN network
of regional centers and other
programs.
LEND faculty and trainees at UW-Milwaukee (“Milwaukee-LINK”)
partner with community members to provide an educational
event annually called the “Urban Autism Summit” designed to
educate families from diverse communities about autism
services and supports. This family-oriented event is held on a
Saturday in June with workshops and sessions for all ages of
family members, including siblings and children.
The Wisconsin Care Integration Initiative
Is producing several “brief” publications to
disseminate information on key strategies
such as family navigation and telehealth.
The WI Act Early State Team
which has continued to meet for
over 10 years supported by a series
of small grants, and most recently
the WI Care Integration Initiative,
developed an Act Early State Plan
which provides a guide for other
state initiatives and programs to
work together towards a common
goal.
WI LEND Collaborations with 3 statewide initiatives
resulted in systems improvements
WI State System Grant
“Connection” 2008-2011
“Learn the Signs. Act Early.” Ambassador (Gail Chodron 2011-2019)
2 state systems Initiatives (2012, 2014-2016), Act Early State Team (2007-2019)
WI Care Integration Initiative
state systems grant 2016-2019
2008 2011 2016
WI LEND Training – enhanced funding from national autism initiatives (2009-present)
WI State Systems Grant “Connections” – lead was WI Department of Health Services,
MCH Title V CYSHCN program. Waisman Center LEND faculty were subcontracted to
participate as project coordinator, provide outreach and referral, and conduct
project evaluation.
“Learn the Signs. Act Early.” – CDC sponsored activities to increase awareness of
early childhood developmental milestones and early signs of developmental
differences. LEND Training Director was the Act Early Ambassador for 8 years, LEND
staff assisted in education, adapting and disseminating WI-branded materials, and
contributed to the development of the Act Early State Plan, serving on the Act Early
State Team.
WI Care Integration Initiative – lead was Waisman Center LEND faculty, contracted
with three “Engaged Community Quality Improvement Projects” covering multiple WI
counties to pilot family navigation, access to shared resources and exploration of
telehealth as methods to improve access to services for children at risk for, and
diagnosed with, autism spectrum disorders.
WI LEND 10-year Results
Training
 372 Long-term LEND trainees graduated
 an average of 5 continuing education events with 600 participants total
per year
Community Outreach
 an average of 18 community education events with 1200 participants total
per year
Research
 an average of 26 LEND faculty and trainees participate in autism related
research annually
Access to Quality Services
The Waisman Center Autism and Developmental Disabilities
Clinic has seen an average of over 1800 children per year for
diagnostic services which includes confirmation or rule out of
autism spectrum disorders. Clinicians have participated in
2019 developing state guidelines for best practices in autism
diagnostic services, which includes an interdisciplinary
evaluation using standardized tools and clinical
observation. Clinicians, researchers and LEND
trainees have participated in annual ADOS
(Autism Diagnostic Evaluation Schedule)
clinical training events and a small group
has also become research reliable.
A model Autism Treatment Services program was started in
the last five years to pilot and document new and evidence-
based strategies for intensive parent-coaching and non-
intensive consultation services for children with ASD in early
childhood, schoolage and emerging adults.
Over a decade of research has been conducted by Leann
Smith, LEND Research Director, with LEND trainees participating
in the development, implementation and
adaptation of the “Transitioning Together”
psychoeducational curriculum for youth
with ASD and their parents. Versions of this
program have been piloted in schools
and for latinx communities.
Through the implementation of quality improvement projects
in selected communities in 1 urban and 2 rural sites (reaching
a total of 11 counties in WI), the The Wisconsin Care
Integration Initiative has learned about challenges
families face in accessing screening,
diagnostic and treatment services
medically underserved communities.
A child and family pathway helps to
illustrate systems that families follow to
obtain services. Two statewide surveys
of families and individuals living with
autism have been conducted and
LEND trainees are assisting in data
analysis and dissemination of survey
results.
Acknowledgements: Funding for these activities has been
provided by a series of grants through HRSA agencies resulting
directly from the federal Combating Autism Act of 2006, and
then through the Autism Collaboration, Accountability,
Research, Education and Supports (CARES) Act.