Speaking Up For Deaf And Hard Of Hearing Kids At The VA General Assembly
Do you know the Virginia state legislation being reviewed that might impact your deaf and hard of hearing child?
Below is a glimpse into what has been happening during the 2019 General Assembly session. I’d never stepped foot into the General Assembly until I was asked to come speak against a bill in 2018. At first, I kind of ignored the request because I didn’t really understand what the bill was all about. But something just kept nagging at me on the inside, so I called up one of my best deaf and hard of hearing resources for help reading the bill. We went line by line (which are all numbered), and she explained it to me, as well as long-term effects of how and who it would impact in Virginia.
I preface with that information because using my voice on behalf of my daughter and kids like her has been so empowering. Advocating on behalf of others who need our help to live happier, more fulfilling and healthy lives is something I feel drawn to do. Everything I learned in this process has truly led to me building this whole site and meeting so many people I might not have known otherwise. I hope you get a little inspiration from it, too!
LEAD-K
For the past three years, a national group called LEAD-K (Language Equality and Acquisition for Deaf Kids), has been drafting legislation which individual state groups have been submitting to their local state representatives. In January 2019, when the newest VA LEAD-K bill came into the Senate Health and Education Committee, the Senators unanimously voted to move the bill for review in the Joint Health Commission. As you can see from this photo after the vote, our grass roots group was excited for this next step.
What is the LEAD-K Bill
Senate Bill 1741 - Summary: Language development for children who are deaf or hard of hearing; assessment resources for parents and educators; advisory committee; report.
Requires the Department of Behavioral Health and Developmental Services, in coordination with the Department of Education and the Department for the Deaf and Hard-of-Hearing, to (i) select, with input from an advisory committee that the bill establishes, language development milestones and include such milestones in a resource for use by parents of a child from birth to age five who is identified as deaf or hard of hearing to monitor and track their child's expressive and receptive language acquisition and developmental stages toward English literacy; (ii) disseminate such resource to such parents; (iii) select existing tools or assessments for educators for use in assessing the language and literacy development of children from birth to age five who are deaf or hard of hearing; (iv) disseminate such tools or assessments to local educational agencies and provide materials and training on their use; and (v) annually produce a report that compares the language and literacy development of children from birth to age five who are deaf or hard of hearing with the language and literacy development of their peers who are not deaf or hard of hearing and make such report available to the public on its website.
So what does that mean?
In short, I believe the bill’s goal is to create an advisory group that can try to figure out why deaf and hard of hearing kids are not acquiring language and therefore falling behind their hearing peers. This advisory group would identify language development milestones, create information, resources and tools to share with parents and educators in order for them to track and improve language acquisition for kids who’ve been identified between birth and five-years-old.
While this bill initially reads as a positive step to help deaf/HH kids, a grass roots group of Virginia professionals (pediatric audiologists, speech pathologists, otolaryngologists, etc.), educators (early intervention deaf educators), parents with children who are deaf/HH and deaf and hard of hearing adults has been opposing the bills by LEAD-K since they began in 2016.
LEAD-K is a group that primarily consists of American Sign Language (ASL) advocates, which gained momentum with Deaf activist Nyle DiMarco, winner of Dancing With The Stars. Unfortunately their bills across the nation have been created to support deaf and hard of hearing families which choose ASL as their primary language and communication method, but the laws that will stem from the research and advisory group would impact ALL deaf and hard of hearing children.
Here is Nyle talking to parents like us who have deaf and hard of hearing babies. He does a great job and really emphasizes all the communication options, but leaves out a BIG one in my eyes… Listening and Spoken Language. You might watch it and say, “But he mentions ‘speech training’ and ‘hearing technology’?” Sadly what we’ve learned by trying to work with and build a more holistic bill with the VA LEAD-K group is that they seem to not actually believe speaking is a valid option for deaf and hard of hearing babies and they will not include it in their bill.
We are in agreement with LEAD-K that Virginia has a problem with deaf/ HH kids falling behind their hearing peers, but not their approach.
With all the national and state systems and programs to support deaf/HH kids from birth to adulthood, this should not be happening. We differ in our approach, as we believe that hearing loss is a medical and an educational issue based on data and the astonishingly bad stats below can be addressed outside additional legislation. Plus, that whole bit about LEAD-K not specifically including hearing and speaking, cued-speech, etc…
98% of children are screened for hearing loss at birth in Virginia
56% of the children identified with hearing loss in Virginia are not making it to early intervention services and classified as loss to follow-up
Virginia has the third highest loss to follow-up in the country
The LEAD-K legislature is biased in the mix of committee representatives and the communication options.
After unsuccessfully trying to meet with Virginia LEAD-K leaders to create a more inclusive advisory group to better represent all languages and communication options, our VA grass roots group created a bill in 2018 (HB676 - details below*) to more holistically represent all languages and communication methods on the advisory committee, including: Cued Speech, Total Communication, Listening And Spoken Language, Manual Coded English, and ASL/English bimodal bilingual approach. It also included medical professionals (audiologists, otolaryngologists, and nurses) and education professionals (deaf/hh early intervention teachers, speech therapists, etc.).
We believed we built a non-biased, bi-partisan bill to help all deaf and hard of hearing kids in Virginia, but LEAD-K opposed it. While we got it passed in the House, it got denied in the Senate Health and Education Committee due to all the opposition from the Deaf community. There is a longer story there, but I’ll save that for another post.
The LEAD-K bill, SB1741, also noted supporting “families who use English at home,” but what about all the homes that speak other languages?
The US Census Bureau data showing another 28 languages being used across Virginia households, as of 2013. (Source) The professionals and educators in our group are very concerned about this, as they have worked with many non-English speaking families needing support and options for their deaf/ HH child over their careers. Only noting “English” is also in direct opposition of IDEA Part C.
The Individuals with Disabilities Education Act (IDEA) is a federal law, first passed in 1975, that ensures free, appropriate public education is tailored to a child’s individual needs available to all eligible children with disabilities. Part C focuses on services for children birth through two.
what now?
Well, we are waiting for the Senate Health and Education Committee to submit the LEAD-K bill to the Joint Health Commission. Once submitted, we will be able to share research, information and our thoughts around why there is definitely a problem in VA and how we believe the current bill as they submitted it is NOT the answer to help all deaf and hard of hearing kids.
Check out a summary of the other bills that impact Virginia’s Deaf and Hard Of Hearing Kids here.
*Below is the bill our grass roots group worked on developing in 2018, in response to LEAD-K’s biased version.
The summary of HB676 as passed by the Virginia House of Representatives:
Children who are deaf or hard of hearing; services; advisory subcommittee.
Declares it the goal of the Commonwealth that each child who is deaf or hard of hearing is (i) as linguistically ready for kindergarten as his peers who are not deaf or hard of hearing and (ii) receptively and expressively literate in English and literate in written English by the end of third grade. The bill requires each agency of the Commonwealth that is responsible for providing services to children who are deaf or hard of hearing to collaborate to provide unified and seamless services for each such child from the onset of the Early Hearing Detection and Intervention process through the end of his elementary and secondary school career. The bill also establishes a 14-member Deaf and Hard-of-Hearing Children's Advisory Subcommittee within the Disability Commission to advise the Commission on the provision of services in the Commonwealth for children who are deaf or hard of hearing.
I do believe sign language is strong communication option for some deaf and hard of hearing kids and their families for many different reasons, but if parents want their kids to ever listen and speak, it has to be done when the child is small due to how the brain neuroplasticity works. I’ll try and write about this soon and share stories from a deaf signing friend who has four kids, two can hear perfect and two are profoundly deaf with cochlear implants.