Act Early Forum Webinar Series Stories from Act Early State Systems - - PowerPoint PPT Presentation

Act Early Forum Webinar Series

Stories from Act Early State Systems Grantees What works, what doesn’t, and why

Thursday, February 13 2:00-3:30 pm ET

Act Early State Systems Grants-Overview

Moderator Camille Smith, EdS, MS, Behavioral Scientist National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

Act Early State Systems Grants-Overview

• Act Early State Systems Projects are 1-year grants
• Awarded on a competitive basis to state teams
• Projects work to…

strengthen their state and community systems for the early identification and linkage to services for children with signs of autism spectrum disorders or

• ther developmental delays.

Act Early State Systems Grants-Overview

• Grantees are involved in public awareness, education

and training, collaboration, and coordination at the state and local level

• For more information:
• visit www.amchp.org search “ambassadors”
• visit www.aucd.org/actearly

Stories from Act Early State Systems Grantees What works, what doesn’t, and why

Chris Smith, Maryland Center for Developmental Disabilities Sara DiRienzo and Canyon Hardesty, Wyoming Institute for Disabilities Gina Guarneri, Center for Excellence in Developmental Disabilities (CEDD), MIND Institute – California Caroline Coffield, Boggs Center on Developmental Disabilities at Rutgers Robert Wood Johnson Medical School – New Jersey

MARYLAND EARLY INTERVENTION AND SCREENING CONSORTIUM

Christopher L. Smith, Ph.D. Director, Maryland Center for Developmental Disabilities

Accomplishments Sustainability Lessons Learned

6

CONSORTIUM MEMBERS

 Kennedy Krieger Institute (various departments)  Johns Hopkins University (various departments)  Maryland State Department of Education (2 departments)  Maryland Office of Genetics (Title V)  Maryland Infants and Toddlers (Baltimore City and Montgomery

County)

 Various public school districts from around the state

7

PROJECT OVERVIEW AND IMPLEMENTATION

 Developing and sustaining statewide

partnership that improve collaboration,

 Developing and disseminating information,

and

 Improving collaborative funding for early

intervention and screening.

Maryland Consortiu m Regular Consortium Meetings Specific Disseminatio n Activities Shared Development

8

ESTABLISHING THE PARTNERSHIP

Partn tner ership hip: The e Maryla land d Earl arly Inter ervention tion and Scree reenin ing Consortiu tium (The The Consor

• rtiu

ium) ) will ll continu inue e effor

• rts

ts to develop lop and d solid idify fy its new w emer erging ing Consor sortium ium. . These ese effor

• rts

ts will ll includ lude: e:

• Regular

lar (qu quar arterl rly) ) plannin ing meetin tings.

• Occurring monthly (Accomplished)
• Main

inten enanc ance e of an indep epen ende dent t websit bsite e (www ww.m .mar aryla landea dearly lysc screen enin ing.c .com

• m).

).

• Occurring, updated monthly (Accomplished)
• Develop

lop multi-year ear sustainabi ainability lity models dels for fundin ing and colla

• llabor
• ratio

ation.

• Models still in development as the

Consortium meets monthly (still in progress)

• Initial

ial and ongoi

• ing evaluat

aluatio ion of the partner ersh ship ip using partn tner ersh ship ip asses sessm sment t tools. ls.

• No model for assessing partnership has

been adopted as of this final report.

9

PRIMARY DISSEMINATION ACTIVITIES

 Conference was held in Prince George's County on March 23, 2013.

 About 135 participants from various counties attended, including healthcare professionals,

childcare providers, parents, and advocates.

 Attendees received training on monitoring early childhood development and were encouraged

to use Act Early Materials for outreach or -- for parents -- as means of checking up on development on their own.

 Act Early materials (among others) were disseminated in all the participant’s conference

packets.  Conference Follow-Up:

 Physicians who came later in the day received an office visit where we gave them a “starter

kit” to show them how to display developmental information in their offices using the CDC materials.

 Child care providers were offered additional training in small groups to teach them how to use

the CDC developmental milestones guidelines to guide their conversation with parents when a delay is suspected.

10 10

CONFERENCE ATTENDEES

Regist ister ered ed Discipline line 65 Child Care Providers 25 Health Care Providers (7 pediatricians, rest were nurses, PA’s, etc.) 25 Parents/caregivers 20 “Other” (home visiting, public school staff, nonprofit) 135 Total

11 11

EVALUATING THE IMPACT OF THE DISSEMINATION

 As a result of attending this conference, I am better

able to articulate the importance of developmental

• screening. 88.52

52% Agreed or Strongly Agreed

 This conference increased my knowledge: 96.7% said

yes. s.

 This conference increased my competence: 79

79% said yes.

 This conference improved my performance: 73.77%

said yes.

 As a result of participating in this conference, do you

intend to incorporate developmental screening in your child care setting? 74 74% said yes.

12 12

LESSONS LEARNED

 Small group of leaders.  Be responsive and quick.  Ensure group ownership.  Both real-life dissemination and broader large-group

reflection and planning.

 Develop different roles based on existing or

potential strengths.

13 13

SUSTAINABILITY

 As indicated, the partnership has undertaken a

number of new funding efforts since its conception including NIH grant submission for statewide screening and referral system.

 Application for 2nd Act Early grant to support

development of technology infrastructure for the Consortium (improved website, web-based data systems and contact management systems).

 Monthly meetings, development and

implementation of specific dissemination activities, and collaborative funding and support efforts that continue to be pursued.

14 14

CONTACT INFORMATION

 Christopher L. Smith, Ph.D.

 Director, Maryland Center for Developmental Disabilities (MCDD)  7000 Tudsbury Road, Gwynn Oak, MD 21244  Email: smithchr@kennedykrieger.org  MCDD Phone: 443-923-9555

15 15

Stories from Act Early State Systems Grantees What works, what doesn’t, and why Sara DiRienzo and Canyon Hardesty Wyoming Institute for Disabilities

Stories from State Systems Grantees: What works, what doesn’t, and why

Wyoming Act Early Wyoming Institute for Disabilities (WIND) February 2014

Who we are

Sara DiRienzo Information Specialist Canyon Hardesty, MS, CHES Coordinator of Community Education

Wyoming Demographics

General

• 97,093.14 sq. miles
• Population: 582,658
• 84.6% White/Non Hispanic

Target population :

• Under the age of 5: 6.7%- 39,038 kids
• Births in 2012: 7,576

Wyoming Institute for Disabilities

• University Center for Excellence in

Developmental Disabilities Education, Research and Service (UCEDD)

• Initial funding in 1994
• Academic unit within the University of

Wyoming College of Health Sciences

Wyoming Act Early

• Project period: January – December 2013
• Funding Amount: $14,747.00
• Project Goal: Educate parents, health care

professionals and child care providers about developmental milestones and the early identification of autism spectrum disorders and other developmental disabilities.

Act Early Project Objectives

1) Create a Wyoming Act Early website appropriate for parents and professionals 2) Facilitate developmental milestone awareness among first time parents through dissemination of customized LTSAE materials:

1) Milestone moments 2) Amazing me 3) Early signs of autism video tutorial 4) Family to Family (F2F) developmental milestones video

3) Create a document describing the pathway to diagnosis of autism or other developmental disability

Act Early Resources

• Milestone Moments

– English – Spanish

• Wyoming Family to Family Health Information

Center (WY F2F HIC)

• Amazing Me

Partnerships

• Department of Family Services

– Foster Parent Program – Case workers

Partnerships

• Wyoming Public Health Nursing- 30 offices in

23 Wyoming counties

– Home visiting – Lactation consultation – Children with special health care needs consultation – Immunization

Partnerships

• Wyoming Department of Health (WDH)-

Maternal Family Health Unit

– Statewide Screening Initiatives

• Early Comprehensive (ECCS) grant
• Statewide Autism Planning Grant -WIND
• Early Childhood- Part B and C

– Child Development Centers

Partnerships

• Family to Family Health Information Center

– Family engagement and awareness

Challenges and Barriers

• Short timeframe of funding:

(April – December 2013)

• Limited scope of activities supported

– Materials distribution

• Initial buy-in and timing of funding

– Wyoming working on collaborating with other agencies to support systems for early screening

Ongoing efforts

• Evaluation of materials use
• Wyoming Family to Family Health Information

Center (WY F2F HIC) collaboration

– Developmental screenings – Medical home initiative

• Statewide screening initiatives

– PHN – Home visiting – Child Development centers

Contact Information

Principal Investigator- Sandy Root-Elledge Associate Director sre@uwyo.edu (307) 766-2764 Sara DiRienzo Information Specialist sdirienz@uwyo.edu (307) 766-2561 Canyon Hardesty Coordinator of Community Education canyon@uwyo.edu (307) 766-5003

Stories from Act Early State Systems Grantees What works, what doesn’t, and why Gina Guarneri Center for Excellence in Developmental Disabilities (CEDD), MIND Institute – California

Supporting the Use of LTSAE Materials in Home Visiting

California Act Early State System Grant

Partners

• UC Davis CEDD (lead)
• California Home Visiting

Program/MCAHP/CDPH (co-lead)

• Infant Development Association of CA
• MAP to Inclusion and Belonging/WestEd Center

for Child and Family Studies

• Project LAUNCH/WestEd Center for Prevention

and Early Intervention

• USC UCEDD

Project Goal

Improve access to information about developmental milestones and referral to evaluation and services through collaboration with state programs to promote and implement developmental screening and early identification.

Project Objectives

• Provide LTSAE materials, individualized with

community referral numbers, to the 21 counties implementing the DPH Home Visiting Program

• Increase public awareness of the importance of

early identification

Strategies

• Partner with state initiatives/projects to

“spread the word” about the importance of early identification.

– Presented at 6 conferences or workshops – Developed a jump drive of materials and resources – Early educator/developmental behavioral pediatrician training team

Strategies

– Early Identification Topic added to the CA MAP to Inclusion & Belonging website.

http://cainclusion.org/camap/earlyidentification.html

– Developed tools to assist home visitors

• Early Identification & Development Flowchart
• Roadmap For Helping Your Child Grow

Strategies

• Screening and referral provided monthly at

the Mexican Consulate General in Sacramento.

– Using ASQ3 – Each family provided with Developmental Screening Fact Sheet and Milestone Moments booklet – Referral for further evaluation, if needed

Continuation Activities

• MAP to Inclusion & Belonging website
• MIND Institute outreach table in various

community locations, 2 -3 times a month

• Partners will continue to promote
• Screening at Mexican Consulate General

Successes

• A strong working relationship between our

Team Member Agencies

• Early Identification materials have been

provided to a variety of service providers

• Partnership with Mexican Consulate

General

Lessons Learned

• Many home visitors were not aware of the

LTSAE initiative

• It is important to emphasize the process of

early identification: developmental

• bservation, screening, referral and family

support.

Lessons Learned

• Need to emphasize the outcome of

screening is referral for evaluation (some home visitors believed they were diagnosing children)

Lessons Learned

• Home visitors shared the belief that they

could positively impact the child’s life course through observations using the LTSAE materials as a starting point.

Contact Information

Cindy Arstein-Kerslake, Coordinator MAP to Inclusion and Belonging carstei@wested.org Laurel Cima-Coates, MPA, Chief CDPH/ California Home Visiting Program laurel.cima@cdph.ca.gov Gina Guarneri, M.A., Program Coordinator UC Davis UCEDD at the MIND Institute gina.guarneri@ucdmc.ucdavis.edu Patsy Hampton, Project Director Project LAUNCH phampto@wested.org Christopher S. Krawczyk, Ph.D., Chief CDPH/ California Home Visiting Program Christopher.krawczyk@cdph.ca.gov DeLora Slattery, Administrative Coord. Infant Development Association of CA mail@idaofcal.org Larry Yin, MD, MSPH Clinical Services Director/USC UCEDD LYin@chla.usc.edu

Stories from Act Early State Systems Grantees What works, what doesn’t, and why Caroline Coffield Boggs Center on Developmental Disabilities at Rutgers Robert Wood Johnson Medical School – New Jersey

Rutgers, The State University of New Jersey

Caroline Coffield, PhD Instructor of Pediatrics Interdisciplinary Training Coordinator

Parent-led Training about Developmental Screening for Providers at Federally Qualified Health Centers

The Opportunity

• 1 year project funded by AMCHP

– Act Early State Systems Grant Project

• Learn the Signs, Act Early campaign
• NJ’s state Act Early team

– Established 2009

• Focus on building collaborations and enhancing Act

Early initiatives

– Community of Care Consortium

Background

• Significant disparities in the identification and treatment
• f ASD, including later identification as well as

misidentification.

– Poor and minority children later

• Late diagnosis later enrollment in intervention and

potentially poorer outcomes

• FQHCs

Project Partners

• The Boggs Center, UCEDD
• Statewide Parent Advocacy Network, PTI
• NJ Early Intervention

Project Goal:

• To improve access to developmental screening and

referral among underserved children in NJ

• Objectives:

1. Promote developmental screening using validated instruments at appropriate intervals and referral for diagnosis, Early Intervention, and community services and supports at NJ's FQHCs. 2. Disseminate Act Early information to community providers that serve families with young children. 3. Partner with SPAN to provide education to resident physicians about developmental screening and referral.

Project Activities

• 1. Provide a parent-led training about developmental

screening for up to 15 FQHCs.

• 2. Provide 1 webinar about developmental screening,

hosted by The Boggs Center and featuring SPAN's parent educators as presenters.

Project Activities

• 3. Provide each FQHC with a resource binder that contains

copies of all Act Early materials, screening guidelines and tools, and other information about community resources and supports for practices and families.

Project Activities

• 4. Provide the Act Early "Milestone Moments" booklets to

FQHCs to be shared with patients and families.

Project Activities

• 5. Create flow charts for each FQHC to illustrate next steps

when a child screens positive for a developmental concern.

Project Activities

• 6. Provide training about developmental screening and

referral at a noon conference for RWJMS pediatric residents.

Progress

• Parent-led breakfast and lunch trainings held at 15 FQHCs,

mostly in northern and central NJ

– Day-of evaluation – Follow-up evaluation 2 months after training

• Webinar provided

– Resources provided for free to all who attended webinar and completed evaluation, providing address to receive materials

• Conference for pediatrics residents scheduled for next week

Progress

• 15 parent-led presentations
• 195 participants
• 1500 Milestone Moments Booklets disseminated
• 15 community-specific resource binders disseminated
• 15 site-specific and 15 New Jersey flow charts illustrating next

steps once a child screens positive for any kind of developmental concern disseminated

Outcomes – Quantitative Results

20 40 60 80 100 120 High Somewhat High Somewhat Low Low

Outcomes – Qualitative themes

• Qualitative Themes

– Awareness of Resources for Referral

• one participant commented on learning about “multiple resources that I

never knew existed even as a healthcare provider and as a parent with a child with autism spectrum disorder”

– Sensitivity

• “having someone who understands and can support is priceless”

– Importance of Early Screening and Intervention – Distributing Information to Parents – Referral Processes and Procedures

Outcomes – Follow up

1 2 3 4 5 6 7 8 Strongly Agree Agree Disagree Strongly Disagree

Outcomes - Webinar

5 10 15 20 25 High Somewhat High Somewhat Low Low

Response & Feedback

• Parent stories very effective
• Appreciate that all FQHC staff were invited to

participate

– Physicians, nurses, medical assistants, receptionists, etc.

• Frustration with evaluation wait times

– Happy to have resources to refer families to in the mean time

Project Challenges

• Scheduling trainings with exceedingly busy staff at

FQHCs

– Despite consistent outreach to FQHC staff, we were unable to schedule any training sessions for FQHCs in the southern region of the state.

• Completion of follow-up evaluations
• Difficulty in scheduling noon conference for Robert

Wood Johnson Medical School pediatric residents

Contact Info:

Carrie Coffield Carrie.coffield@rutgers.edu

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