Parents and Professionals: Working Together to Improve the EHDI System
Posted Mar 13 2009 3:43pm
"Still, one of the great omissions in too many intervention programs is the crucial role of parents within the process. Implementing improved systemic protocols and practices which encourage informed choice and the empowerment of families with children who are deaf or have hearing loss must be a fundamental objective to ensure the effectiveness of programs worldwide."
The GPOD (Global Coalition of Parents of Children Who are Deaf or Hard of Hearing) has recently launched a survey for the purpose of strengthening EHDI programs worldwide based on parental experiences within the process. Please take ten minutes of your time to take the survey here http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d
Here are some of the things parents are saying...
"I have a few specific things I would like to bring up. No. 1. I feel that all children should get tested between 6-9 months regardless of whether they passed the newborn hearing screen or not. My son lost his hearing before he was a 1 year old. With a hearing loss that early in life (when a child is unable to tell you they can't hear) it could be devastating when you consider the educational factors. Being able to hear is just as/or more important than the other milestones such as crawling, walking, etc. Most children can now get an ABR without beind sedated so it would be nice to see them get tested in the pediatricians office during their monthly check-ups.
There are still too many kids not getting diagnosed with hearing loss until they are 2, 3, or 4 years old. Another thing, I want to bring up is counseling. I could have used a good counseling session or two to help with the emotions I was feeling, guilt, shame, the grief of realizing that your child is deaf and not knowing where to turn. I asked for counseling and was told I could get it but could only get it from a First Steps Provider (our early intervention program) and that the only ones were over 2 hours away from me! I was already driving miles and miles to doctor and audiology appointments.
I think a counselor should be located in every area of the state for any parent who needs it. It might also help to have that person for sibling issues, etc. I also think that parents should be allowed to mark a box on the whatever they send to the State Department where they live saying if it would be o.k to add them to a list for other parents to contact. I know that we are on that list but I can't get any information. The HIPPA laws make it so no one can give me any information on a child that might deaf/hoh in our area. I have had to seek out parents, have Meet/Greets and send info out to all audiologists to get to their clients. I know that as a parent I would no care to let others know where I am and how to contact me with any questions."
"I can't stress enough how important it is for the information given out by audiologist at the time of diagnosis to be done slowly and sensitively. I don't feel that 'choices' booklet is adequate. There is a lot of information and it's quite overwhelming. Parents are often shocked numb by the diagnosis that any information given soon after that really becomes quite foggy and missed.
There needs to be something done between the time a child is diagnosed and the time before they have to be fitted with hearing aids. In my case it was about 6 weeks. It was six weeks of hell. Not knowing was awful and I had so many questions to ask but had no one to ask, as I hadn't been introduced to anyone from the Early Intervention Services and I wasn't really a client of AH at that point because we were still in transition. This period is incredibly tough on families and I think this period is one that needs to be addressed."
"The professionals we have had the opportunity to work with have been exceptional. We have never felt pressured to make a particular choice and they have been understanding of the challenges we have faced and clear with suggestions and support about how to overcome the challenges. The only time we felt like the professionals were "marketing" their perspective to us was when we visited our cochlear implant centre. There was no pressure to choose their path - but you could see their passion and enthusiasm for what they were discussing and they couldn't help but make their case for their communication option.
Our son is progressing well. We are pleased with our choice and with the people we have to work with. I feel that if we had chosen any other option - we would have been equally as supported through our family service worker who would have connected us to the other resources available to families. The provincial deaf school home preschool program was amazing as well. We wondered if there would be a slant - one way or the other - to their approach but they completely followed the lead of the family decision and adapted the curriculum to meet our needs."
As you can understand by reading, we have a great deal to learn from both positive and negative experiences...please share your stories.