Educators Roles in Reducing Loss to Follow-Up Irene Schmalz - - PowerPoint PPT Presentation

1-3-6 Family Educators’ Roles in Reducing Loss to Follow-Up

Irene Schmalz ischmalz@vcu.edu Kathleen Watts kathleen.watts@vdh.virginia.gov Dana Yarbrough dvyarbrough@vcu.edu

Feb 28, 2017 16th Annual EHDI Meeting

Disclosures

• Irene Schmalz, Ph.D., employed by Virginia

Commonwealth University, has no relevant financial

• r nonfinancial relationships to disclose.
• Kathleen Watts, MA, employed by the Virginia

Department of Health, has no relevant financial or nonfinancial relationships to disclose.

• Dana Yarbrough, MA., MS., employed by Virginia

Commonwealth University, has no relevant financial

• r nonfinancial relationships to disclose.

Setting the Stage Production The Next Act

Setting the Stage

• VA EHDI program structure
• VA EHDI & Title V/CFI collaboration

Production

• 1-3-6 Family Educator model

components The Next Act

• Lessons learned
• What’s next

What We’ll Cover Today

Virginia’s EHDI Program

• ~102,000 births per year
• 150 - 160 infants diagnosed with

hearing loss per year

• 60 hospitals
• 25 hospitals perform outpatient

rescreens

• Over 250 audiology sites with

varied services

• 40 early intervention systems
• Follow-up Specialist - 1

Part-time

• Follow-up Specialist - 3

Full-time

• Follow-up Specialist - 6

Part-time

• Project Coordinator

Part-time

• Follow-up Coordinator

Vacant

• EHDI Coordinator

Full-time

Why Engage Families in EHDI in this Way?

• Needed “boots on the ground”
• Family Educators live in various parts of the state
• Extend EHDI’s outreach to stakeholders (hospitals, audiologists, others)
• Prior to this project, EHDI did 6 hospital visits/year and 6 audiology visits/year
• Family Educator visits: 23 hospitals in 11 months, 14 audiology visits in 6 months
• Needed ambassadors for the program
• Educate about EHDI without it coming from the state
• Can share their personal EHDI experiences
• Expected loss to follow-up to decrease after visits from our passionate

parents

Family Engagement Contracts

2015 - 2017 2011

• 2014

2007 - 2010

Parent to Parent Support (Guide By Your Side) Systems Navigational Support/Cultural Brokering 1-3-6 Family Educators

2000 – Present EDHI Advisory Committee Family Representation

Levels of Family Engagement & Building Leadership Behaviors

Leadership Development

Surveying Providers Systems Navigationa l Support Emotional Support

3

Systems Change Level

2 Supporting Others Level 1 Personal Level

NOVA Richmond Hampton Roads Tri- Cities

(877) 567-1122 www.centerforfamilyinvolvement.org

Piedmont Bristol Roanoke Northern Neck Tidewater

Brown bubbles = Local F2F Offices Yellow Star = Cultural Brokers Red Star = 1-3-6 Family Educators Green Star = Liaisons

Questions About Setting the Stage?

Who are the 1-3-6 Family Educators?

• Parents of children with

hearing loss

• Passionate about making

this project successful!

• Have the time to commit

about 6 hours per week for this role

1-3-6 Family Educator’s Job Description

• Visit local hospitals and audiology practices
• Learn about and distribute resources for

hearing loss as they pertain to children within their local jurisdiction

• Provide emotional and systems navigational

support to families that have children with newly identified hearing losses

Timeline of 1-3-6 Family Educator Trainings

July 20, 2016 Training - 3 FEs April 30, 2016 Training - 3 FEs October 15, 2016 Training - 6 FEs December 14, 2016 Webinar - 6 FEs March 15, 2017 Training - 6 FEs January 11, 2017 Webinar - 6 FEs

• Feb. 27, 2016

Training - 3 FEs

Training

• Overview of EHDI program and data
• Role as a 1-3-6 FE
• How to use various EHDI/CFI products

with families, hospitals and audiologists

• Hospital and audiology site visit

packets, including a survey, resources and information to give out

• Role play providing unbiased family

support

• The process used to match a 1-3-6 FE

with a referred family

• Types of hearing loss, including

DeafBlind

Tools & Resources

Personal Insights from Valerie: 1-3-6 Family Educator

Bridie today...

Questions About Production?

What Have We Learned?

Need for:

• a VDH EHDI liaison to 1-3-6 FE
• on-going face to face meetings with 1-3-6 FEs to clarify

processes, brainstorm solutions to challenges

• a parent to coordinate the program and provide support

and mentoring to 1-3-6 FEs

• 1-3-6 FEs be part of a bigger effort to engage families and

build leadership so they are not ‘on their own’ but connected to other family leaders

What Have We Learned?

Findings from hospital visits inform VDH/EHDI of unique needs and resources in pockets of Virginia Findings from the hospital surveys

• All hospitals use the brochure provided by the

state

• LTFU varies greatly depending on method of

giving message to parent that baby needs follow- up

• LTFU is twice as high if all nurses screen than if

there are dedicated screeners

Audiologists Strongly Agree

Having a 1-3-6 FE who is a parent helped me see things from different perspective

Did the Family Educator Visits Impact LTFU?

SOH NGH SNH NPW UVA AH SRH Average % of rescreens complete Dec ‘15– Feb ‘16 37.5% 85% 60% 66.7% 63.6% 83.3% 92.9% 69.8% % of rescreens complete Jul ‘16– Sept ‘16

88.8%

51.7% 57%

83.3% 69.4% 100%

77.8%

75.4%

• Ave. age of

rescreen Dec ‘15– Feb ‘16 4.97 months 2.55 months 1.44 months 1.92 months 2.26 months 3.69 months 2.37 months 2.74 months

• Ave. age of

rescreen Jul ‘16– Sept ‘16

2.27 months 1.46 months

2.29 months

3.00 months 1.94 months 2.87 months 1.37 months 2.17 months

Future Work Engaging Families

• Expand hospital and audiology practice

visits

• Continue providing unbiased parent to

parent support

• Develop a state based learning community

for pediatric PCPs and families to increase knowledge and engagement within the EHDI system

• Provide additional leadership behavior

development to 1-3-6 FEs

Questions?

★ “This project gives me HOPE for our children’s future!” ★ “For the longest time I felt like the professionals knew more than I did. Now I see they want to learn from me…a parent.” ★ “Never underestimate the power of a family’s

• journey. I have been really amazed of how my son’s

story has impacted professionals to want to make a change within their system. My hope is that it will leave a message with them to want to make a difference and help other families.”

 “The 1-3-6 Family Educator program has enabled me to share my/my child’s story so that

• thers can understand the importance of

testing, diagnosis and intervention. It has helped me feel that because of my story, I am making a difference in the lives of others.”  “Being a 1-2-3 Family Educator is giving me the

• pportunity to provide the services and supports

I wished I had 19 years ago when my son was diagnosed with a profound hearing loss.”