As part of the Video Scrapbook, there are 11 videos clips that deal with family support and advocacy issues related to EHDI. Transcripts of each video clip can be found below. Feel free to use any of the video clips in your own presentations.

Transcripts of EHDI Scrapbook Video Clips

Speaker: Joni Alberg
Video: fs-albe1.mpg

Transcript: We may help a family initially, just in that initial stage of understanding. Link them to resources; link them to other families, whatever financial assistance, just anything that they might have a question about. But then they can come back to us for help throughout the educational life of their child.

Speaker: Joni Alberg
Video: fs-albe2.mpg

Transcript: I think that there should be a support agency for parents as soon as a child is identified with a hearing loss. We're right between early intervention and the diagnostic evaluation that confirms the hearing loss. We get the referral and our parent educators are trained to work strictly with parents helping them through understanding what that hearing loss means. If it's a baby there's usually…well even when it's an older child that's just been identified, there's a grieving process. If the parents have never experienced hearing loss in their family or in their lives they…its totally foreign and scary to them; so there needs to be someone who is there in that caring, emotional support role.

Speaker: Jackie Busa
Video: fs-busa.mpg

Transcript: A really good message that I remember a father saying to me…the father was deaf and his children were deaf was, ‘Your son is going to be alright. He's healthy, he's healthy.’ and for all the running around that you do and the urgency it was nice to hear that message that despite whatever we did if he couldn't hear anything, we could find a way that he would be happy in life and all these things that you want for your child.

Speaker: Jennifer Cernoch
Video: fs-cern1.mpg

Transcript: As a child is born, particularly a child with special health care needs, families many times are just overwhelmed with everything that they have to process. They have to look at medical care, they have to look at educational services, so it becomes very important for families to be able to navigate that system of care for their children.

Speaker: Jennifer Cernoch
Video: fs-cern2.mpg

Transcript: Its one thing to have services for your child, but it's another thing to make sure that those services stay in place. And that the system doesn't break down once you get those services or trying to navigate those services. So that's where the advocacy component comes in that families are empowered to take the information that they have not only from their own child's needs, but from the needs of other families, and be able to make some policy changes at their community level, or at the state level, or even at the national level. That to us is very important.

Speaker: Jennifer Cernoch
Video: fs-cern3.mpg

Transcript: When families are connected to services and families are the decision makers at that level for their services, believe it or not, quality health care improves and the cost effectiveness of services is what we see at the outcome. And I think that's what we are all trying to see in this whole arena of children with special health care needs.

Speaker: Melisa Engel
Video: fs-enge1.mpg

Transcript: I live in rural Pennsylvania. We have very limited resources so I started a support group and also advocated for universal screening on the local and state level. I went back to our local hospital and advocated. And with a long time and persistence got them to start universal hearing screening and actually wrote grants and raised money and donated equipment to honor Monica Mersa. Then worked on other local and state level that is now a law in Pennsylvania. So now it's just the beginning.

Speaker: Melisa Engel
Video: fs-enge2.mpg

Transcript: People don't realize that you can test a baby. I think that if you went and said 'How old do you have to be to test a child?' They'd still think you have to be in kindergarten. I mean, check-off lists for pediatricians is still kindergarten on their check-off lists. Like when was their hearing tested? I don't think people are educated to know, or parents are educated to know that this can be done at birth. So education to the parents and for parents to go to their hospital and say, 'Did you test my child for hearing loss when they were born? If not where can I get them tested at?'

Speaker: Christy Herden
Video: fs-herdo.mpg

Transcript: I think that there is always an experience of loss, definitely. We were very fortunate in coming across professionals who really always reminded us, you know what… she's a baby first. She's hardof-hearing second. Just love her and play with her. Just nurture her and do all those types of things and then learn about everything else.

Speaker: Candace Lindow-Davies
Video: fs-lind1.mpg

Transcript: Family support to me means connecting them with other people in the same situations, about connecting them with other families that have children with hearing loss because as I stated earlier, parents have an infinite amount of wisdom that they can share. They've paved roads that new parents are just starting down. And I think that they can help make that a little bit easier for that new family. If those connections can be made, if those new parents can see the successes of these older children and realize…my kids are going to be fine no matter what communication mode, no matter what he chooses to do. He's going to be very successful. It gives them a little fast forward button to hit and see the future and recognize that it's going to be alright.

Speaker: Candace Lindow-Davies
Video: fs-lind2.mpg

Transcript: It is a grieving process we are giving up the idea of a child we thought we once had. We're faced with all sorts of new challenges, so if we can think of that parent as needing support for themselves and not just the child needing intervention.