Delivering Screening Results: What Parents Want Janet DesGeorges Colorado Families for Hands & Voices Cami Geilenfeldt Iowa Hands & Voices

The Story of Late Identification Saras Story The Families in your communities……

What parents of late IDd kids want you to know! We wish our child had been screened at birth! We wish our child had been identified at birth, we could have started appropriate treatment - we grieve the wasted time that went by before we knew Our child is delayed in language – if she had been screened (identified), this might not be the case.

What parents of late IDd kids want you to know! I always wonder what life would be like for Brian if we had known at birth….I know it would have made a difference. I look at families today who have children who are doing so well, and wonder if all the struggles we have had could have been avoided.

The Story of Early Identification Bradys story The families in your communities…

What parents of early IDd kids want you to know! Thank you for having the newborn hearing test. My sons result led to re-testing and enrolling in EI. Your process is working great. I am grateful for the screening program. My son only has hearing loss in one ear so if he was never screened we would not know he has a hearing loss and would have missed out on EI. Parent support was the best help!!

CDC Parent Survey 2006 Pilot Study (Massachusetts and Colorado) –Funded by CDC –OBJECTIVES: Conduct a pilot study of families satisfaction and anxiety levels –Families whose children passed an initial screen (group 1) –Families whose infant referred on initial screen, but passed out-patient (group 2) –Families with infants who are identified with permanent hearing loss (group 3)

Parents Concerns Parents should be present for the screening. –(will parents be in the way? Make the screening more time consuming, thus more expensive?) Parents should not just be given a card when their baby fails but face to face contact with someone who knows the system (in writing/in person/available to answer questions) I wish they had offered me Immediate contact with family (parent-to-parent) support All families should have access to hearing aids, not just families who have Medicaid My physician told me not to go back for a re- screen since this test is designed to scare parents!

A Parents Wishlist - Screening The in a perfect world screener More Information - not less Put it in writing! Consistency in the system Families emotions - Finding the balance between panic and apathy

…In a Perfect World The Screener –Has basic knowledge about Screening What is screening? Why is it important? What does it mean if the baby fails the hearing screening? –Knows about hearing loss, Incidence, next steps, –Competent in using equipment –Trained in how to deliver information Scripting Has a basic awareness of outcomes of Early detection, positive awareness of individuals who are deaf/hh. Cultural Competency –Deaf parents –Sets the tone for parents in the EHDI process – First Impressions

More Information, not less. Put it in Writing! Start with consumer friendly brochure. Statistics and research information Understanding Risk Factors Info. On types of Hearing Loss Give a list of questions to parents which they may want to ask the diagnosing Audiologist. (CDC has one available) Info. From Parents to Parents

Where are Parents on the Map? Make Sure the whole process is explained (screen, re-screen, diagnostics) – Know the statistics Gives Parents the power of follow-up –Parent Roadmap –CO Guidelines, Parent Checklist –Other states….

FAQs of parents going through the screening process? If my child fails this screening, what are the chances of hearing loss? How reliable is this test? Will it hurt my baby? How much is this going to cost? Do all babies in this country get screened? Whats the point of screening now?

Consistency in the System Professional Collaboration and Education - physicians, nurses, audiologists, volunteers, screeners, Early Intervention programs, parent organizations, consumer organizations Statewide protocols and guidelines. Point of entry defined Start education at the prenatal level

The Journey for Families: Balancing the Emotional process Too little information creates apathy Too much information creates panic The balance - Info. Increases through transitions (screen, re-screen, diagnostics, early intervention) -sensitivity to postpartum -seriousness of hearing loss -delivery of information - confident, professional, knowledgeable

What We wish you hadnt Said…. Its probably just fluid in the middle ear I know how you feel Your baby has failed I cant relate to any of this. I had three perfectly normal children Your child has a (profound, mild, moderate) hearing loss

What We wish you had said to us….. Heres a list of resources to call/contact Heres some contact information of other families who have been through this process You may want to talk to professionals who know hearing loss. Here are some numbers. Its too early to tell for sure (the final outcome) You are going to make it through this – just take one step at a time

What we want you to know about having a child who is deaf or hard of hearing I want you to know that my child who is deaf is the greatest gift I have ever received. The impact of hearing loss is real, yet it is not hopeless We as a family are stronger because of this journey. My child is…..an honor student….a soccer player….a college graduate…..a champion swimmer…..an actress….a viola player…..

PARENT POWER Parents are the most critical element in helping create a sustainable, quality EHDI system that meets the needs of the children and families we serve!

The need and right to communicate is the most fundamental of human rights. To deny it is to harm the human spirit; to foster communication is to reveal all the possibilities of life. National Deaf Education Project, 2000 Act as if what you do makes a difference – It does. – William James

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