MCHB CARES Evaluation Highlights (2014 – 2017)MCHB CARES Evaluation Highlights (2014 – 2017)...
Transcript of MCHB CARES Evaluation Highlights (2014 – 2017)MCHB CARES Evaluation Highlights (2014 – 2017)...
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MCHB CARES Evaluation Highlights (2014 – 2017) 2019 Autism CARES Grantee Meeting
Washington, D.C.
July 18, 2019LCDR Leticia ManningSenior Public Health Analyst, Division of Services for Children with Special Healthcare NeedsMaternal and Child Health Bureau (MCHB)
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Presentation Overview
• Overview of grant programs evaluated
• Study design and methodology
• Autism CARES Act objectives• Key areas of impact
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Overview of Grant Programs Evaluated
• Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) training programs
• Developmental-Behavioral Pediatrics (DBP) Training Program • State Implementation and Innovation in Care Integration grants
programs (referred to as State systems grants) • Autism Intervention Research Programs, including five research
networks and two research grant portfolios • National Resource Centers Autism CARES Act National Interdisciplinary Training Resource
Center State Public Health Coordinating Center for Autism
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Study Design and Methodology
Grantee reports
Research networks questionnaire
Semi-structured interviews
Discretionary Grant Information System (DGIS)
National Information Reporting System (NIRS)
Environmental Scan
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Autism CARES Act Objectives
Increase awareness of ASD/DDs
Reduce barriers to developmental screening and diagnosis
Support research to advance evidence-based interventions for ASD/DDs
Promote the development of evidence-based guidelines for interventions
Train professionals to use valid and reliable developmental screening and diagnostic tools and to provide evidence-based interventions for individuals with ASD/DDs
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Increasing Awareness of ASD/DDs
• Grantees promoted ASD/DDs awareness to professionals
• Grantees promoted ASD/DDs awareness to community members and professionals Learn the signs. Act Early (LTSAE)
• Grantees focused their outreach efforts on reaching underserved groups
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Reducing Barriers
• Improved access to early developmental screening, diagnostic evaluation, and intervention services
• Leveraged existing initiatives and resources • Grantees improved coordination of ASD/DD services across
agencies and systems of care • Grantees engaged families and underserved populations
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Supporting Research
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Training Professionals
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Engaging Families and Self-Advocates
• Equipped parents to become advocates• Engaged parents in strategic planning• Leveraged family-led organizations• Hired parents to work in clinical settings• Engaged families and self-advocates in LEND training
programs
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Transition
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Final Evaluation Products
Autism CARES evaluation report
Program-specific factsheets
https://mchb.hrsa.gov/maternal-child-health-initiatives/autism
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Connect with HRSA
To learn more about our agency, visit
www.HRSA.gov
Sign up for the HRSA eNews
FOLLOW US:
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Grantee Impact Mini KeynotesResearch
• Judith Miller• Framing by Elizabeth Morgan
Training• Karen Ward• Framing by Michael Thornton
State Systems• Dafne Carnright and Ivanka Carbajal• Framing by Joanne Quinn
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Autism CARES Conference 2019
Grantee Research Framing
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UNIVERSAL AUTISM AND DEVELOPMENTAL SCREENING IN PRIMARY CAREHow to do it and how it changes outcomes
July 18, 2019Judith Miller, PhD
Amanda Bennett MD, MPH
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OVERVIEW
• How clinical research, implementation science, and improvement science inform each other
• How we implemented universal developmental and ASD screening
• What we’ve learned so far• About the accuracy of the M-CHAT/F• About referral patterns following a positive screen
• How we ECHO Autism – Tele-mentoring support for providers
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THE CYCLE OF HOW TO IMPROVE SCREENING
• Improvement Science
• Discovery
• Implementation Science
• Research
Make a screener
How can we get it
into practice
DID we get it into
practice
What can we learn now
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SCREENING AT CHOP
SWYC and M-CHAT (and Follow-Up Interview) integrated into electronic health records (EHR)
• Parents complete SWYC and M-CHAT electronically
• Providers can see results, and complete M-CHAT Follow-Up Interviewwithin EHR during visit
• Results and next steps integrated into EHR
© Epic Systems Corporation. Confidential.
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SCREENING SUCCESSES FOR OUTCOMES
• Electronic screening is feasible• 91% success rate at CHOP• This took a lot to create from scratch, but would be easy to replicate
• Kids who screened positive got a diagnosis at least 6 months earlier than kids who screened negative
• At least 13% of the kids identified with screening were of no concern to the parents
• We still have more underway:• Compare to a control group of unscreened kids • Study parent concerns in all kids, not just the screen positives
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DISPARITIES WE UNCOVERED
• Minority children were less likely to come for both screening visits
• Despite 91% screening, when kids were missed, they were more likely minority children
• Minority children were more likely to screen positive• And when they screened positive, minority children were less
likely to be referred
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PRACTICES WE DISCOVERED
• Clinicians made decisions about who to give the M-CHAT follow-up interview to
• They gave it more often to false positives than true positives
• ~25% of kids who screened positive were already in EI• There were disparities here also, with minority children less likely to
already be in EI
• 40% of the new screen positives were referred to EI the same day of the positive screen
• Referred kids were more likely to have also failed the SWYC, and to be older, male, white, English speaking, and publicly insured.
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WHAT RESOURCES EXIST TO ADDRESS THE CHALLENGES ASSOCIATED WITH SCREENING, REFERRAL, AND DIAGNOSIS? (AMANDA BENNETT)
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WHAT IS ECHO LIKE?
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WHAT ARE WE LEARNING FROM ECHO AUTISM?• Pilot study:
• Statistically significant differences in primary care provider practices from baseline to post-ECHO Autism participation
• Self-efficacy• Adherence to ASD screening guidelines• Use of ASD-specific resources
• Multi-site study (10-sites):• Currently analyzing data from multi-site trial• CHOP: significant changes
• Provider attitudes• Comfort• Screening and Management practices
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CONCLUSIONS
• More to come, but so far:• Accurate screening led to an earlier diagnosis (by at least 6 months)• Accurate screening identified children with no parent concerns (at least
13%)• We can identify real-life practices
• Not everyone comes to all their visits• Not everyone gets the follow-up interview• Not all providers know what to do • Not all communities have the same services
• But we can learn a lot by studying what actually happens in practice
• Real-life influence on care is a feature, not a glitch
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ACKNOWLEDGMENTS
• Lisa Biggs, Betsy Brooks, Jesse Dudley, Marsha Gerdes, Jim Guevara, Whitney Guthrie, Kristen Fleming, Susan Levy, Juhi Pandey, David Rubin, Robert T Schultz, Kate Wallis
• CHOP Primary Care Network• CHOP Clinical Data Warehouse• ECHO Autism• LEND• DBPNet• The United Way• The Commonwealth Fund• Centers for Disease Control and Prevention• NIH 1R03MH116356-01
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Grantee Impact Mini-Keynotes: TrainingKAREN WARD (AK)FRAMING BY MICHAEL THORNTON (AR)
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www.uaa.alaska.edu/department
Strengthening Diversity in the Alaska LEND program
Karen WardJenny Miller
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Alaska Demographics
Black 3.9%
One or more 4.6%
Asian 5.8%
Hispanic 6.6%
American Indian/Alaska Native 14.7%
White 67%
Population estimate 735,720
Anchorage 298,695
Fairbanks 99,357
Juneau 32,756
Over 100 languages spoken in the Anchorage School District
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The Alaska Context
No medical school
75% of the state is not on the road system
3 separate health care systems: tribal, military, and private
Distance delivered to increase access and diversity Alaska LEND without Walls
Grow our Own
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Disciplines
Family
MedicineNursingOccupational
Therapy
Psychology
Public Health
Special EducationSpeech Language
PathologySocial Work
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Fellows
12 Long Term50% from communities outside of Anchorage
3 Advanced Medium Term (Family or Self Advocate)
Fellows are a mix of practicing professionals, students, parents & self advocates
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Guiding principle
Engagement of diverse perspectives is a pathway to ensuring everyone has a voice in how policies are developed and how services are provided.
While cultural and linguistic diversity was woven within the curriculum, we intentionally developed strategies to improve our program in this area.
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AUCD Diversity and Inclusion Toolkit : Personnel and Trainees
Our focus has been to implement the toolkit strategies:
hire and retain a diverse and inclusive workforce of staff and faculty
develop and nurture partnerships with organizations representing or affiliated with diverse communities
establish mentorship programs to support professional development of staff, faculty and LEND Fellows
recruit and retain a diverse Fellow pool
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Increasing the family voice
In addition to Family discipline Fellows and families as speakers in seminars
Created a LEND Family Advisory CouncilRecruited from host families around the stateRecruited from Family discipline Fellows
Provides specific feedback to the LEND curriculum
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Faculty Diversity
Recruited a Faculty who is an Alaska Native, Tribal Leader from a rural community who also has a son with disabilities.
She was on our LFAC and participates at a distance Her role:
infusing the rural and cultural context into discussions with Fellows and faculty
leading the inclusion of cultural issues in faculty discussions and curriculum planning
ensuring the integration of cultural and linguistic competence into weekly seminars
developing and supporting strategies to improve recruit and retention of cultural diverse faculty and Fellows
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Faculty Diversity
Recruited a self-advocate Faculty from a rural area (LEND alum)
She participates using distance technology She is the current chair of the DD Council Provides the perspective of service users
Mentors self-advocate Fellows to develop leadership skills and self confidence
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Faculty Development
Supported our Faculty member who is an Alaska Native to participate in a mentoring training at the University of New Mexico (funded through a Focused Assistance to Support Training FAST project)
Obtained a grant for on site training and technical assistance by the National Center on Cultural and Linguistic Competence
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Partnerships Engage community partners to work with Fellows on
leadership projects
Leadership projects produce products that meet the needs of local communities, address cultural issues
Fellows develop relationships and networks that help launch their careers
Develop community partnerships for clinical/field experiences
Manage neurodevelopmental outreach diagnostic clinics (Title V) Support Fellows to participate
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0%
20%
40%
60%
80%
100%
120%
2015 2016 2017 2018 2019 2020
Fellow Diversity
White Black NA/AN Asian 2 or more Other Hispanic
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Impact on the state of Alaska Influenced the the new comprehensive, interdisciplinary neurodevelopmental clinic by
the Anchorage Native Medical Center
The Medical Director encouraged the clinic manager to apply to LEND (she was accepted)
LEND alumni working in the clinic
Influenced the recruitment of 2 developmental behavioral pediatricians (Alaska had none for several years)
Responded to the Infant learning program to provide Stat MD training (ILP state manager is a LEND Alum) to increase capacity to screen infants and toddlers
Influenced implementation of Alaska’s DD vision initiative:
a vision of a flexible system in which each person directs their own supports, based on their strengths and abilities, toward a meaningful life in their home, their job and their community.
Self Advocate Faculty was recently appointed to a 4 member self-advocate leadership team to guide the implementation of the vision
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Impact on the state of Alaska
Neurodevelopmental outreach clinics evolved from screening clinics to diagnostic clinics (reducing the need for families to travel to Anchorage) and incorporating an interdisciplinary approach
At the individual/ clinical level
state level staff in public health, senior and disability services, behavioral health, and public education are LEND alumni
Increased reach of LEND in rural and remote areas
LEND alumni working in tribal health system as well as private health systems
Increased voice of self advocates in leadership and service delivery
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Reflections: It’s a process and a journey Building partnerships increases recruitment from more diverse
populations
Maintaining involvement of LEND alumni in the program increases recruitment
The networking of Fellows with each other from across the state and community partners has a positive impact on their careers
Helping other families navigate systems was the motivation for most of our Family discipline Fellows to apply to LEND –the experience broadened their perspective
Having faculty from rural communities participate at a distance creates a sense of community among distance Fellows
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The future
Keep on keeping on Increase Faculty development activities/
opportunitiestime is the main barrier
Recruiting a special education Faculty from a rural community
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Thanks
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Grantee Impact Mini-Keynotes: State SystemsDAFNE CARNRIGHT AND IVANKA CARBAJAL (DE)FRAMING BY JOANNE QUINN (RI)
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Dafne Carnright, MS, LPCMH, CPSP, Family Service Coordinator, ACT Program Coordinator
&Ivanka Carbajal, Bi-Lingual Family Navigator
www.autismdelaware.org
Delaware’s Autism Care TeamAutism CARES Meeting July 2019
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Autism Delaware: Helping People and Families Affected by Autism
Who We Are
Autism Delaware is statewide non-profit serving people of all ages with autism spectrum disorders,
their family members and friends, and the community at large.
Founded by a group of passionate parents in 1998Started as all volunteer, in a family’s basement
Has grown to over 100 employees!
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Autism Delaware: Helping People and Families Affected by Autism
Programs & Services
Family Support – (now a nationally recognized model )POW&R- Productive Opportunities for Work and Recreation - a nationally recognized vocational and wellness programLegislative & systems advocacyScholarships, conference stipends
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Autism Delaware: Helping People and Families Affected by Autism
History of Family Support at Autism Delaware
Family Navigation= Support As Needed
Fundraising dollars = 2 Family Navigators in our northernmost county to answer questions from parents as needed (mostly phone).Added 1 part time Family Navigator downstate in 2009 (fundraising dollars again)
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Autism Delaware: Helping People and Families Affected by Autism
Our VisionTo create a more comprehensive service, with breadth to support what our families need.
Meet the growing support/coordination needs of our familiesFollow-along, proactive service Family-drivenCommunity-basedFocused on empowering familiesCapacity to grow (staffing & families served)Sustainable, funding **
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SUCCESS –All within our grant period!
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The ACT Program Today
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Autism Delaware: Helping People and Families Affected by Autism
Increased Capacity
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Autism Delaware: Helping People and Families Affected by Autism
How We Began to ExpandFamily Support
Funding:September 2016 -Health Resource & Services Administration (HRSA) State Implementation Grant (3 year grant)2017 - Legislation establishing the Delaware Network for Excellence in Autism (DNEA). Earmarks funds for Family Navigation
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Autism Delaware: Helping People and Families Affected by Autism
Development: Pilot Program
We wanted to develop a sustainable service model to meet future needs and requirements to the extent possibleThrough our pilot program, we were able to develop our infrastructure, process, forms and materials, and staff training protocol
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The ACT Pilot
Autism Care Team (ACT) Program Pilot-4 families
Referral basedStrengths based, family-drivenCommunity-basedCare coordinationRoutine & ongoing meetingsConnection to parent education
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Family Peer Support Services (FPSS)
• Developed and researched through the mental health and substance abuse systems– SAMHSA– National Federation of
Families for Children’s Mental Health
– System of Care Grants
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Autism Delaware: Helping People and Families Affected by Autism
Evidence-Based Practice & Reimbursement
In 2007, the Centers for Medicare & Medicaid Services (CMS) deemed peer support services to be an evidence-based practice, and therefore, a reimbursable services for states that decide to include them in their state Medicaid plan.
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• How is FPSS different?
GOALS!
Autism Delaware: Helping People and Families Affected by Autism
Family Peer Support Services (FPSS)
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ACT Program
• Types of Services provided through the ACT Program– Outreach & Information– Bridging & Coordination of Services– Advocacy & Empowerment (coach & model)– Parent/Guardian/Caregiver Psychoeducation– Community Connections and Natural
Supports
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What Does It Look Like?1. New family calls and speaks to intake coordinator.2. Intake coordinator explains services, family chooses, first
appointment in scheduled. 3. Family/FSP are authorized for 9 months of family support, up to 9
hours a month. This direct service can be delivered in face-to-face meetings in the community or via HIPAA compliant tele-health meetings.
4. Direct support meetings can include, but are not limited to, family and FSP, care coordination meetings with providers, IEP meetings, etc.
5. A Care Plan is developed to guide the focus of support.6. A discharge process is completed at the closing of the service.
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FPSS:
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What We Learned
Factors vital to the success of the program: • Developing your peer support program to meet
the requirements of your Medicaid State Plan• Structured staff training & supervision protocol• Development and sharing of language to referral
sources around the comprehensive nature of program
• Communicating to families the breath of the program and the expectations around meetings (that will be billable) versus phone support (original model)
Autism Delaware: Helping People and Families Affected by Autism
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But most important…
• Our Family Support Providers
Autism Delaware: Helping People and Families Affected by Autism
“Sharing my experiences as a parent who has been through it creates an instant bond with my families. They
see me and they know they can do this. I know I am changing lives. “
-Jenn Aaron, FSP
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Hispanic Population –The Need for Outreach Efforts
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Outreach EffortsHire bilingual personnelTraining on cultural competencyEnsuring access to our website through translation plug-insEstablish relationships with trusted providers and organizations, which will facilitate referrals for serviceMemorandums of agreement for use of office space from community partners who families trust Materials in English & Spanish
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Outreach Efforts
Advertise in Spanish language publications such as Hoy Delaware and Hispano MagazineBilingual staff attend multicultural festivals and other events to connectMeet with clients in the comfort of their homeWord of mouth can introduce FSPs as a trusted resource
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Examples
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Program Evaluation Process
Autism Delaware: Helping People and Families Affected by Autism
Wrapping up the pilot nowCRESP :– Midpoint interview, discharge interview
Family Empowerment ScaleWe will be exploring other program evaluation tools and quality assurance strategies as we move forward
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Where We Are Going
As we wrap up our pilot and grant funding: Formal evaluation of ACT ProgramContinually assess family/community needsPlan for adding FSPs as we grow (including additional supplies and technology for each)Create a system for analyzing and identifying when staff caseloads are fullContinue to build sustainable funding system
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Future Funding
Reimbursement:Medicaid direct billingDelaware Division of Prevention and Behavioral Health Services (the state children’s mental health agency, System of Care Grant)
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On the Impact of ACT
“God, I don't even know where to start with that one. Just so, sorry [participant started to cry] I don't know why I cry. If it wasn't for her, I couldn't even tell you where my son would be. She has just helped, with everything…”
- Parent & ACT Pilot Participant
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Question & Answer
Dafne Carnright – (302) [email protected]
Ivanka Carbajal – (302) [email protected]
Annalisa Ekbladh- Director of Policy & Family Services –(302) 224-6020 or [email protected]
Autism Delaware- www.autismdelaware.org
Autism Delaware: Helping People and Families Affected by Autism
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Autism CARES Act 101E-LEARNING MODULE LAUNCHKATE TAFT (AMCHP)
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Autism CARES Act 101E-learning Module
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Purpose• To provide education on the history, purpose,
evolution, and impact of the Autism CARES legislation and the programs it supports
Who is it for?• CARES grantees and their partners• As well as: public health leaders and professionals,
students, policymakers, and others working with children, youth, and self-advocates with ASD/DD and their families
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What we hope you’ll get out of it
• Understanding of how the CARES legislation affects CARES grantees and your networks
• Tools to communicate the impact for services/systems for autistic individuals and their families
• Orientation, training, and/or refresher for CARES grantees
• Tool to engage external partners• Education resource for policymakers, etc.
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Module Content• Optional pre- and post-tests• Setting the Stage/History
• National focus on autism• Grassroots to federal legislation
• CARES Federal Legislation Timeline• Programs and activities funded through Autism
CARES• Impact of CARES• Summary and Evaluation
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Let’s take a look!
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Also available as a PDF!
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Questions?
How could you use this resource?
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Access the module and spread the word!• The module will be available on the SPHARC and
ITAC websites: owww.amchp.org/SPHARCowww.aucd.org/ITAC
• Email to CARES grantees - July 22
• Public launch - July 23 and beyond!