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 16 th Annual EHDI Meeting
Disclosures • Irene Schmalz, Ph.D., employed by Virginia Commonwealth University, has no relevant financial or 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 or nonfinancial relationships to disclose.
What We’ll Cover Today Setting the Stage • VA EHDI program structure Setting the Stage • VA EHDI & Title V/CFI collaboration Production • 1-3-6 Family Educator model components Production The Next Act • Lessons learned • What’s next The Next Act
Virginia’s EHDI Program ● ~102,000 births per year ● 150 - 160 infants diagnosed with hearing loss per year ● 60 hospitals ● 25 hospitals perform outpatient ● Follow-up Specialist - 1 rescreens Part-time ● Follow-up Specialist - 3 ● Over 250 audiology sites with Full-time ● Follow-up Specialist - 6 varied services Part-time ● Project Coordinator ● 40 early intervention systems 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 2007 - 2015 - 2011 2010 2017 - 2014 2000 – Present EDHI Advisory Committee Family Representation Parent to Parent Systems 1-3-6 Family Support Navigational Educators (Guide By Your Side) Support/Cultural Brokering
Levels of Family Engagement & Building Leadership Behaviors 3 Emotional Support Systems Navigationa Systems Change Level l Support 2 Surveying Providers Supporting Others Level 1 Leadership Development Personal Level
NOVA Northern Neck Piedmont Brown bubbles = Local F2F Offices Yellow Star = Cultural Brokers Richmond Red Star = 1-3-6 Family Educators Tidewater Hampton Tri- Green Star = Liaisons Roads Cities Roanoke Bristol (877) 567-1122 www.centerforfamilyinvolvement.org
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 March 15, 2017 July 20, 2016 Training - 6 FEs Training - 3 FEs December 14, 2016 Feb. 27, 2016 Webinar - 6 FEs Training - 3 FEs January 11, 2017 April 30, 2016 Webinar - 6 FEs Training - 3 FEs October 15, 2016 Training - 6 FEs
T raining • 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 Valer ie: 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 Audiologists Strongly Findings from the hospital surveys Agree • 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 Having a 1-3-6 FE who is a parent helped me see things from different • LTFU is twice as high if all nurses screen than if perspective there are dedicated screeners
Did the Family Educator Visits Impact LTFU? SOH NGH SNH NPW UVA AH SRH Average % of rescreens 37.5% 85% 60% 66.7% 63.6% 83.3% 92.9% 69.8% complete Dec ‘15– Feb ‘16 % of rescreens 88.8% 51.7% 57% 83.3% 69.4% 100% 77.8% 75.4% complete Jul ‘16– Sept ‘16 Ave. age of 4.97 2.55 1.44 1.92 2.26 3.69 2.37 2.74 rescreen months months months months months months months months Dec ‘15– Feb ‘16 Ave. age of 2.27 1.46 2.29 3.00 1.94 2.87 1.37 2.17 rescreen months months months months months months months months Jul ‘16– Sept ‘16
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 others 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 opportunity to provide the services and supports I wished I had 19 years ago when my son was diagnosed with a profound hearing loss.”
Recommend
More recommend
