Public Comments Submitted To The Joint Commission On Health Care
Hello October! In November, the Joint Commission On Health Care will be meeting to review the work a large group of us worked on all summer at the Virginia Capitol.
Like all the legislation I have been active with regarding Charlotte and her hearing loss, it was emotional and a learning experience. There are definitely very divided views depending on if your deaf child uses technology to hear and speak or if you have gone with ASL (American Sign Language).
I did meet a great father who has gone the bilingual route, Listening and Spoken Language and ASL, but he tended to lean with the ASL community. It was great to meet with him outside the formal meetings and understand better how and why they chose to raise their kids with both languages and in both cultures. He and his wife are hearing, so this is an amazing commitment on their part. Hats off to following your heart!
But we still disagreed on many points of SB1741 with the primary one being that I don’t believe it will move the needle for our deaf community, with tech or without. And based on his experience with Early Intervention and Henrico schools’ IEP review, he does think the bill will help. It was kind of nice to agree to disagree. Felt very grownup and real.
So, below is my letter I sent in during the “Public Comments” timeframe once the JCHC researcher had gathered all his options and ideas based on the 4 workgroup sessions we did this summer at the Capitol. (You can review them all here.)
Submissions were due 9/25/19 and as you can see, I got them in just in time. The JCHC members will receive a packet of all comments submitted in advance of the November 14 Decision Matrix meeting, and well - I guess it’s in that meeting we will either have a new bill for the 2020 legislation session to support or oppose. Holy exhausting, but worth it.
25th September 2019
Dear Members of the Joint Commission on Healthcare,
I am the mother of four amazing children. Our third daughter was born deaf and hard of hearing in 2013. She is now a thriving, mainstream first grader in public school, but it was a long road and she still has hard work ahead of her. Choosing to offer our daughter, Charlotte, access to sound through technology.
She is still deaf but able to hear when she wears her cochlear implant (left side) and hearing aid (right side). She has been in speech therapy since 8 months old, Early Intervention and private therapy, and still goes twice a week through Henrico County Public School services. Deaf children who access sound through technology first have to learn to listen, then they have to speak, then they have to work their tail ends off to do both in loud, noise-filled environments every day for the rest of their life.
While finding excellent services for Charlotte through personal research, networking and moving from Richmond City to Henrico County (Charlotte attended the deaf/HoH preschool at Twin Hickory), I know there are large improvements that need to be made across the state of Virginia where service provisions for children with hearing loss are considered. Advocating for my child has introduced me to so many amazing kids and their families who use all forms of communication.
Unfortunately the 0-5 year olds with hearing loss in the Commonwealth, who need support to access language, and their families WILL NOT find an unbiased path to their unique potential through SB1741.
Following are the policy options that I think could help Virginia in supporting these deaf/HoH kids, as well as those I feel could really set children with hearing loss and their families back as they are trying to support their deaf/HoH child.
REQUEST TO JCHC COMMITTEE
Policy Opt 1: Take No Action On This Bill
Rational:
This bill was created by a group in California and would be a financial burden on the Commonwealth, instead of a pathway to the solutions we need to support ALL deaf and hard of hearing kids - which are more services and service providers for kids and families with hearing loss. No matter if families choose for their deaf/HoH children to listen and speak by using technology and hard work or wants to learn sign language, cued speech or some mix of sign and speech - a committee of people trying to make milestones for ASL is misplaced energy.
Policy Opt 4: Option For Language Development Milestones
Rational:
Milestone criteria exists already to support these ASL families and state agencies have avenues to support families at all stages, it’s hard to find many of the resources and service support..
It took me EIGHT MONTHS to even learn that a cochlear implant was an option for my child, including multiple audiology visits, Charlotte’s Early Intervention assessment. I built a website to help parents like myself be able to learn, find resources in Virginia and connect: www.DidYouSayDeaf.com
The Commonwealth already has multiple milestone resources for ASL and listening and spoken language, but they are not always easy to access and often outdated.
Use online resources to share and update for dissemination to service providers and families needing guidance to make sure their child is acquiring the chosen language of the family.
Policy Opt 5: Coordinating Agency, VSDB, With Inputs From DBHDS
Rational:
I support with recommendation. Make sure the DBHDS (Early Intervention) and VDOE are highly involved to ensure the solutions to support kids and parents in language acquisition are rolled out across the state, as VSDB only has jurisdiction on campus.
Add programs to support deaf and hard of hearing kids who access sound through technology to learn to listen and speak, as right now there are no programs available at VSDB and service providers seem to be hard to find in more rural parts of the state.
Policy Opt 6: Amend The Budget. Review Reimbursement for Telepractice
Rational:
Offer telepractice services to families needing support, but have no service providers offering knowledge in their chosen communication method for their deaf/H0H child.
DO NOT SUPPORT
Policy Opt 2: Legislation and Budget Amendment
Rational:
None of the proposed changes will impact outcomes for deaf/HoH children needing to learn a language to thrive. This option only increases financial strain on our Commonwealth. We need to stop debating this bill and start taking action that will help kids with hearing loss acquire language between 0-5.
Policy Opt 3: Analysis of Literacy Outcomes
Rational:
The data collection process and system in place would not deliver accurate data for desired outcomes. Tracking the success or challenges of all deaf/H0H kids becomes very hard, as most kids who access sound through technology no longer need services after a certain point and are no longer tracked with their deaf/H0H peers using sign language. This produces incorrect learnings for the population and could create programs that don’t work or even worse, take the deaf/H0H population backwards.
Policy Opt 7: Deaf Mentor Program Through Agency Not Legislation
Rational:
A mentorship program is helpful at many stages of life, no matter if you are talking language, career or raising a family. VSDB, with generations of their graduates, could begin an ASL mentorship program, as they already have a very large budget line item and decreasing attendance. Additional state budget seems unnecessary.
I, like many, have spent endless hours talking, debating, learning, thinking and hoping that our deaf and hard of hearing kids have the resources needed to acquire language and thrive in their lives. I have learned so much over the years, as I’ve advocated for Charlotte and kids like her. What a gift to have the chance to help the families of the future learning how to support their kids with hearing loss.
Sincerely,
Leah Muhlenfeld