Nature VS. Culture VS. Science
Two sisters at the morning bus stop and one dandelion wish…
Over 5% of the world's population, around 466 million people - 34 million of which are children, have disabling hearing loss, according to The World Health Organization. Of these people, 90% are diagnosed with sensorial hearing loss.
Sensorial Hearing Loss refers to the blanket diagnosis of nonworking sound sending hairs in the cochlea. A group of researches in London are working on a drug that repairs or grows working hairs, which could change the lives of millions of people around the world.
Today, people with sensorial hearing loss have the option of hearing aids and cochlear implants. Charlotte uses both and has been able to acquire language, learned to understand when spoken to and use her language to expressively share her thoughts and ideas.
There’s no question science will continue bringing us amazing cures to common human disabilities and this poses all sorts of questions and impacts to consider.
Yesterday I went to my first Joint Commission on Health Care workshop meeting to discuss Senate Bill 1741, which I oppose and have written about before. At first read, the bill sounds like something that will help deaf kids - so it must be good. Right? Well, nothing is ever that simple.
I’ve been working with a group of professionals, educators and parents who have been analyzing this bill line-by-line for several years now (this is year 3 for a version of it to be submitted to the Virginia General Assembly for review and approval). Started by LEAD-K, the bill states its purpose is to develop assessment resources for parents and educators to understand the language acquisition of a deaf and hard of hearing child using ASL and English.
Today in our meeting about 25 people gathered in the state building to express concerns against and reasons for the bill. A researcher, whom many of us had already been interviewed by, led the 2-hour discussion and furiously took notes trying to understand why there has been such debate over this bill that’s just “trying to help deaf kids.”
One of the odd things I’m still not 100% clear on and is posed for the JCHC researcher to figure out is if “ASL assessment tools” already existed or not. Many of the professionals from the Department of Disabilities, Department of Education and Speech Pathologists explained how “easy” the bill was making this task sound, but how complicated it really was to do it on a significant sample size that would create actionable research. And if they DO exist, isn’t the problem more about helping people know about them and use them so they can track their child’s success?
One woman who was participating over the phone shared the results to-date from California LEAD-K bill that passed a couple years ago. It seems to not be going well, as they were hoping for a sample size of 5,000 and have only been able to track 700.
We went down a meeting objectives bulleted list for people to state why they are in “agreement or disagreement” with the bill starting with “Selection of ‘language development milestones’ for D/HH children 0-5 (Section A, C), then the Composition of the Advisory Committee (Section B), on and on. We did not complete the 7 bullet agenda in our two hours.
I spoke several times and expressed concerns as it was specifically asked in alignment with the legislation, such as how there was not clear definition of what and how the “language development milestones” were planned to be defined or used. And when it came to the advisory committee, how I didn’t feel represented in the 13 members, as a hearing parent of a deaf and hard of hearing child who uses technology to use what the community calls, “Listening and Spoken Language,” as well as concerns about all the kids who speak Spanish or any other of the 40+ languages spoken in Virginia.
We never got into the history of trying to deal with this bill, but our group of grass roots parents, professionals and educators have tried to ask LEAD-K to make changes to their bill to more clearly include and represent our families that choose technology to give our kids access to speech and sound, but they continually refuse to list the 6 full communication options by name.
BUT what did come out was the statement, “We just want all deaf kids to be bilingual in American Sign Language and English.” It was clarified that they state English because people who use ASL also have to learn to read English, as ASL is not similar to our spoken word - thus the low literacy rates. So confusing and so much history. My heart hurts for this Deaf population and culture of the years before, as I know they see their population dwindling since 90% of kids today who are D/HH and born to listening and speaking parents are leveraging technology and not learning ASL.
Empathetic or not, I believe LEAD-K is strategically using legislation as a last grasp at trying to maintain their Deaf Culture instead of dealing with the REAL problems at hand facing all deaf and hard of hearing kids.
There IS a real problem here in Virginia and kids not acquiring language is a symptom, but is it the source of the problem?
Why was it so hard for us to get Charlotte diagnosed as deaf and hard of hearing?
Why didn’t my pediatrician share with me how hearing loss has so many options these days and in the 21st century deaf kids can hear and talk?
Where are the missing pieces to sharing all the 6 communication options with families of newly diagnosed deaf kids and people to support them in assessing their lives, what they want for their child’s future and how to go about supporting their child on their journey, both at home and school?
I think these are the questions we should be discussing with this smart group of people. Is legislation necessary? I don’t think so or at least not at this time. We just need people working together to talk about what’s really going on and solve it for the greater good of all these kids and families who deserve help in connecting and creating lives that thrive.
So I agree the root of the bill is good and should be addressed - all humans deserve a way to communicate and connect with other humans, but the way LEAD-K is approaching it is a land grab versus a bridge to the next amazing generation of deaf and hard of hearing humans who never have to be left behind again.
Below is what I sent to Senator Dunnavant, who represents our family based on where we live. I’m hoping to meet with her this summer. Over the past few years we’ve had brief encounters during the Senate Health and Education Sub Committee meetings, as well as many emails, but maybe this summer we can meet to discuss this in more detail as she sits on the Joint Commission of Health Care.
Position Summary:
The proposed legislation is redundant, potentially financially-draining for already-strained agencies in the Commonwealth, and restricts parental decision-making in regards to the communication options for their child.
My concern is that the proposed legislation is problematic for three main reasons:
It is redundant to federal and state mandates put forth by the Individuals with Disabilities Education Act (IDEA), and in direct conflict with the most recent reauthorization of Early Hearing Detection and Intervention (2017). IDEA already mandates the assessment and intervention processes in both Part B (School-Age) and Part C (Early Intervention) of the Act, and provides language regarding the development of the most-qualified team to make recommendations for these children. The EHDI reauthorization includes specific language about the need for parents to have access to compromised and unbiased information in regards to the communication choices available to them and their child. Our position is that, while we know areas of service provision need to be improved, we do not believe legislation is the way to accomplish this.
It is potentially financially-devastating to the Commonwealth. Our state agencies are already seriously financially-constrained when attempting to provide appropriate services to all children with disabilities. It seems to be a serious misuse of state funds to develop and fund an unnecessary, parallel system. Again, we do not believe additional legislation is the answer.
It restricts parent decision-making by only naming one specific communication option for children with hearing loss, and grouping all of the others together in a nondescript assemblage. It is our request that the Commission ask the Patron and proponents of this law why they refuse to include specific communication options, such as Listening and Spoken Language, Cued Speech/Language, Simultaneous Communication, etc. For a more complete list, please see the Communication Options sections in the Virginia Resource Guides.
*** Side note- I double dog dare you to click that link above. It’s virtually impossible to find the resource guides made to help families like ours.. that’s why I created this website. Here is my version of the their chart - and ignore the I’m only offered 5 colors for the template in this circle chart - need to do a custom fix for it!
If you live in Virginia and want to understand this more, get involved or just say “hi” - I’d love to hear from you. Let’s connect!