Community Engagement at the Systems Level

Building and Sustaining the Wisconsin Community of Practice on Autism and other Developmental Disabilities
Autism State Implementation
Grant: 2008-2011
Connections

Funding: $300,000 per year from HRSA to the

state Title V Children and Youth with Special
Health Care Needs (CYSHCN) program to
implement a state plan, plus in-kind staff
contributions.
Key elements for sustainability: coordinator
on staff, shared leadership, quarterly meetings,
current topics, quality venues, food, family
stipends, Leadership Education in
Neurodevelopmental Disabilities (LEND) trainee
involvement.

Anne B Harris, PhD, MPH, RD; Tim Markle, MA; Sharon Fleischfresser, MD, MPH

As demonstrated using the elements of

the Collective Impact(1) Framework:

Community of Practice on Autism and other Developmental

Disabilities (CoP ASD/DD)

Common agenda while services for children

with Autism Spectrum Disorders has provided
a common focus, the perspective of families
and people with different disabilities was
included from the beginning and remains as
an important theme, increasing impact on all
service systems for CSHCN

Steering team: parent and professional co-chairs,

meets by phone 3 times yearly, meets in person once
each year in summer to review annual survey results,
plan upcoming year focus of each CoP ASD/DD meeting
Steering Team and CoP ASD/DD Par ticipants:
family members and self-advocates,
teachers/educators,
clinicians,
State and county public health program staff
researchers
representatives from regional and state parent organizations

Measuring results consistently the common

measurement has been the annual
participant survey, sent to all members of the
CoP ASD/DD listserve, annual response rate
averages 100 (80-120)/year

CoP ASD/DD Meetings:

3 times per year (Fall, Winter, Spring)
Half-day to full-day, location varies
Ad hoc program planning group determines structure
and content/speakers for each meeting
Partners organizations provide sponsorship (food,
venue, travel costs) includes: Dept. of Public
Instruction, WI LEND program, Autism Society of WI

Mutually reinforcing activities CoP on

ASD/DD aligns activities and provides
complimentary content to conferences and
training provided by partner organizations
Continuous communication email has
worked best, but face-to-face meetings are
also an important link for the steering
committee and ad hoc workgroups

What Happened After the Grant Ended?

Annual Survey Comments

I have a greater understanding of the services
available and the process to help families
access [ASD/DD services].
I wish I could attend every {meeting} because
I would.
I was able to come away with a wealth of
knowledge that was helpful to pass on to
others on my team as well as to callers.
Dont go away!

State-wide meetings
Average# attendees
Number on listserve

Long-term Impact

Grant
9
74
651

Post-Grant
12
92
1000

Post grant annual survey results (average):

77% find attending the CoP ASD/DD highly or moderately valuable
82% say it has increased their knowledge about ASD/DD
82% say they have transferred this knowledge
65% believe it has led to improved access for families
46% say they have connected with new partners

For more information about the CoP ASD/DD go to: www.waisman.wisc.edu/connections

University of Wisconsin Madison, Waisman Center, UCEDD/LEND Program

Backbone organization(s) Wisconsin

Department of Health Services in partnership
with Waisman Center UCEDD at UW-Madison
and parent organizations (ASW, ASSEW,
others) have continued to provide the time
and infrastructure support to sustain CoP on
ASD/DD activities
(1) Kania, J and Kramer, M (2011) Collective
Impact, Stanford Social Innovation Review