Public Comments for 06/30/2021 Disability Commission
If you can’t hear us at the table that doesn’t mean, we shouldn’t be there it means listen beyond your typical ears. Or if my humming or echolalia seems like I am not paying attention that does not mean we shouldn’t be there, we don’t want to be there, we do not have anything to say or that we need you to speak for us. WE NEED YOU TO PASS THE MIC….OUR WAY! Whether we speak with words from our mouth, devices, reading our written words, signing or other movements we all have something to say. The disability community has to be for ALL disabled people and ALL means ALL. Period. End of Sentence. And before you ask, yes, this is true even for ‘That person’. Yes, even the person you think is completely unaware of everything going on around them…like me. Or even the person without any kind of communication in place, even the most disabled person you can imagine. Yes…them too! If THEY choose. If they choose to listen, then digest maybe respond later like my style… that is OK. Allow me (like you all here do) that accommodation. I have lots to say. Do not think because I believe in magic and I write about all the positives and how I love Disney that I do not understand the struggles all the needs that so many of us have. That you are somehow smarter or better than me or any one of us. I do not judge people as better or worse. We are all equal in our own unique ways. We deserve access to the same tools and information as everyone else. We deserve to be at every table. Thank you to this committee and all of you serving on it for allowing me to be me. I hope all of this I send helps in some way. Thanks to the help from my mom who is always there for me.
In reference to the diploma question, I collected information with my mom that I think will help everyone. Here is Rachna's presentation on it- https://www.youtube.com/watch?v=kFU3CBZ_tLE (Rachna is Jake’s mom who is a talented gifted performer and she pushed this through to get passed, we helped get the word out) Here is a 3-minute overview- https://www.youtube.com/watch?v=T4EggUehn64 Here it is in writing- https://thearcofnova.org/content/uploads/sites/6/2019/04/Special-Permission-Credit-Accommodations-1.23.20.pdf The other two are from our Lucy Beadnell who is the amazing Director of Advocacy for the Arc of Northern Virginia, our ‘go-to’ person, one of my strongest support people and our very good friend. We also want to thank everyone as well as our Governor who signed the proclamation for April to be Autism Acceptance Month. As stated on the proclamation, for decades we have celebrated April as Autism Awareness Month and since 2008 April 2nd has been known as Autism Awareness Day bestowed by the United Nations. Now more than ever, we know the choice of our words matters, and that unity and acceptance are foundational values to move our society forward. It was time to advance the language; awareness provides education and understanding; acceptance is what is needed to inspire inclusion and system-wide changes to achieve full participation within our society. I want people with disabilities to speak for themselves whenever possible. Let’s make it as easy as possible for all to give their thoughts and opinions. If it is helpful, I volunteer to reach out to people with disabilities and they can feel free to reach out to me and I will share all the information I receive. All ages, colors, religions, needs, cultures…we all have something to say. My right to be heard is not contingent upon my eye contact or when the last time I stimmed or jumped. There is no such thing as the voiceless, only the unheard and the silenced.
Other thoughts/suggestions I am adding. 6. Eliminate subminimum wages for workers with disabilities. The new labor law that comes into effect today July 1st changing compliance with the federal Americans with Disabilities Act now applies to employers with five or more workers. This is a good step, and we thank all of you that worked on it. Let’s work to research ad implement additional employer incentives to recruiting, training, and hiring people with disabilities. 7. Ensuring state Commissions, testimony for the General Assembly, and other public forums (e.g. Budget Hearings) will continue to have a virtual option as well as advance sign ups. These are key so folks don’t have to manage transportation/staff to attend AND so they know what order they’re speaking in and how/when to be prepared. It would be ideal to allow recorded testimony to be submitted in advance and played live. This has been brought up numerous times to me and my mom. This allows us to edit and retape getting our words…our message just the way we hoped it would be. This could be a powerful option and if you had people in other states or far away this would be very beneficial. 8. Let’s Plan Ahead. Together let’s work on a plan to ensure that if/when there is another pandemic, the lessons learned on how the disability community needs support/accommodations are taken into account. For example, people with Disabilities and caregivers should always be given priority access to vaccines and related information and protecting the right to have caregivers with them (now allowed in hospitals but not rehab centers) We personally had a problem getting the vaccine because of my needs and wanting to get them together without all the lines. Thanks to reaching out to so many we were able to make it happen but not everyone can do that. So many sad scary stories of people in the hospital alone and cannot speak their needs clearly like me. If that would have happened to me my mom says she would have gotten in with me or arrested as I would have needed her. So, we fought for those rights hard. I have difficulty using words to express my pain, my understanding of what doctors are saying to me. I say what I think they want to hear. Thank all of you for helping to work on this to make it correct. 9. Exploration of option to automatically enroll SSI users to Medicaid which from watching the meeting that was brought up and discussed. 10. Expand broadband to make telehealth more widely available and accessible and support research-based solutions to better streamline assistive technology and virtual supports for all people throughout the Commonwealth. This was also discussed in the meeting. 11. Agree with Delegate Hope to replace word handicap with disabled in codes. If words are in doubt, I will volunteer to help get a consensus from people with disabilities if that helps.
These first 5 are from my initial suggestions I spoke and emailed to all of you with perhaps a little more details. 1. Supported Decision Making. This is an alternative to Guardianship, and I was part of a trial group over the summer that ended after two months. The ASK is to add a definition in law. Ensure it is a legal choice same as Guardianship. This allows individuals with disabilities to identify trusted individuals to help with decision making. This is a change and should not have a $ cost involved with this. 2. A bill for Front Line First Responders training on how to recognize and handle individuals with disabilities. Create a set training for the entire state. I know people/organizations who will work with the state on this . 3. Mandatory training for Judges to learn about people with disabilities and/or mental health needs as part of their annual Continuing Legal Education credits. This is now required for attorneys in the Court system , not Judges. Likewise, it would be great to have mandatory training for other justice officers, like police and sheriffs who also have regular required training. 4. Inclusive Education – Currently if a child does not fit in to the so-called mold and needs what they school may consider too much support they move them to a private school which can be located anywhere. Instead of moving the child disrupting that the school is in their home base take the money that would have been spent and bring the resources to the child. Child can then stay in home base and school is expanding their resources which will benefit others as well. Some disability organizations in southern VA area fought this as they have relationships with private schools. This should not take away their right to go to private school just give them another option. Each region in VA is different with their own needs and this should work for the entire state. 5. Waiting List Waivers. Direct state funding to cover individuals with Priority One level needs. In addition, mandating to request a permanent extension of telehealth and virtual waiver services.
I was listening in on your meeting this morning and I heard about the Recover Funds. I heard the discussion about possibilities of how best to distribute the funds. I work with the Deaf community and there is little access for them to meet personally with the legislatures. We tried in 2020 however the tablets with VRS were not very efficient due to connectivity issues. Could some of the funding go to a small fund to help improve Closed Captioning for committee meetings and an interpreter fund to have access to live interpreters when someone from the Deaf community wants to talk to their representatives face to face (the same access as the hearing public has at ANY time the legislative building is open). Thank you for your attention in this matter.
Dear Disability Commission, I am a grassroots advocate who first showed up to your Commission asking for patronage for the LEADK Bill (Language Equality and Acquisition for Deaf Kids) on October 18, 2016. Following our presentation, Senator Favola and Delegate Pogge graciously agreed to patron our bill on the spot. At the onset of our advocacy efforts, LEADK was a 3 women multiracial Deaf team. LEAD-K has since grown in size and support. We have introduced legislation in 2017 - 2020 and continue to learn more about the legislative system with each endeavor. Due to the COVID-19 pandemic, we did not present a bill in 2021. In 2019, our bill was referred to the Joint Commission on Health Care. After their study, a report was published and presented to the JCHC - 7 policy options were presented for consideration and yet they voted to take no action despite the fact that 90% of the 265 public comments received were in support of introducing legislation and a budget amendment based on SB 1741 (pg 17 of report). It is 2021 and I am still unable to walk the halls of the General Assembly, unencumbered by communication barriers, to advocate bills concerning Deaf rights. The iPad devices that have been instated to provide VRI interpreter services do not work 100%. We need access to in-person ASL interpreters to walk with us as we meet with our representatives. We need access to in-person ASL interpreters when we meet with our representatives in our home districts. And these services need to be budgeted in such a way that Deaf constituents do not come to be viewed as a financial burden to the individual offices. It is my understanding that the Disability Commission in 2019 authorized a fund for ‘communication access’. I am requesting transparency from the Disability Commission to know how and where those funds are being used. But what I really want to call your attention to is this: Deaf children are still arriving at kindergarten with language delays due to the audistic practice of professionals telling parents not to sign to their kids and a lack of state funded ASL resources for Deaf kids and their families who chose ASL. Data collected by our LEADK Bill would show this picture very clearly. The Deaf community is a small population, but that doesn’t mean VA can allow these children to continue to slip through the cracks. We see too many generations of Deaf/hard of hearing kids graduating from high school at lower rates and with lower language fluency than their hearing peers, which has lasting impacts on their achievement, health, and quality of life. I am requesting the Disability Commission use JCHC’s study and support a bill based on SB 1741. It’s all about language acquisition for babies to age 5. Tracking their language milestones in their primary language (English, ASL, or both) and providing resources to parents to have access of FACT BASED RESEARCH that shows how ASL and English grow together when language is 100% accessible to Deaf kids, so they can arrive to kindergarten READY to learn! We need a patron for our bill from both houses and strong support from the Disability Commission. Will the Disability Commission do the right thing and sponsor this bill into law? Thank you Jenny Witteborg