Comments Document

The need to remove the restrictions that prohibit parents and guardians of minors in the Commonwealth of Virginia from being paid as personal attendants. The need to make the flexibilities that Appendix K has temporarily provided to families just like my own, a PERMANENT option!

Hello, My name is Sheena Cobb. I was born and raised in Richmond, VA. I am a Black Deaf Advocate and I advocate for the Deaf, DeafBlind, and Hard of Hearing Community here in Virginia. I would like to share with you my experience and why I support LEAD-K. LEAD-K is important to me, because I experienced language deprivation myself when I was growing up here in Richmond, VA. LEAD-K is needed to make sure all Deaf children have access to language - ASL and English. The state of Virginia must make sure all deaf children are included and have the language access needed to ensure they acquire language from an early age. Growing up, the language deprivation that I experienced made learning to read and write very frustrating. I don’t want to see other deaf children go through the same struggles that I went through to achieve literacy. I want to make sure all deaf children have equal language acquisition and strong literacy skills. This is why I am advocating for the LEAD-K bill to pass here in Virginia. I hope you will all listen to my testimony and support the LEAD-K bill.

Good afternoon! My name is Katherine Malady - I am a member of VAD - The Virginia Association of the Deaf and an advocate on their LEAD-K Committee. 2022 is going to mark our 5th attempt at passing a bill in Virginia to promote early childhood language equality and acquisition for Deaf kids to make sure they are kindergarten ready! I'm sure everyone on this committee is well aware that the first 5 years of a child's life is a critical time in their development. A study from the Harvard University Center on the Developing Child* reports that "in the first few years of life, more than 1 million new neural connections are formed every second.... sensory pathways like those for basic vision and hearing are the first to develop, followed by early language skills and higher cognitive functions." Don't forget that 95% of deaf children are born to hearing parents who are likely not fluent in a signed language. State managed programs like early intervention and preschool must provide support to the child and family to create a language rich environment as soon as the child is identified as deaf, hard of hearing, or DeafBlind. We can't let those crucial seconds, minutes, months, or years go by without cultivating language rich environments for deaf children! Language deprivation, which occurs when deaf children don't have access to a language rich environment, in those early years of life has significant implications on the child's ability to learn to read and write, develop relationships, succeed in school, find a job and maintain their mental health. A crucial part of ensuring that all Deaf children have access to and are acquiring language - is through tracking language milestones. The LEAD-K bill (which will be introduced by Senator Hashmi and Delegate Carr in the 2022 Virginia General Assembly) calls for the state of Virginia to do just that - 1. to provide resources to parents so they can track their child's language development at home (in ASL and English) 2. to provide assessments and train the early intervention specialists and early educators that work with these Deaf children on how to assess their language acquisition (in ASL and English) 3. to generate a state report on deaf children's language acquisition (in ASL and English) to identify areas where resources and supports need to be bolstered We can not continue to wait for children to arrive to Kindergarten to identify delays in language acquisition. At which point in time, critical developmental windows have already begun to close. 18 states have already passed a LEAD-K bill and made it a priority to end language deprivation in their state. Deaf children in Virginia can't wait any longer. Let's make 2022 the year that Virginia becomes the 19th state to commit to language equality and acquisition for all deaf kids! Let's set them up for success in Kindergarten and success in life! Thank you for your services and I look forward to your support of this bill. *Source: https://developingchild.harvard.edu/resources/inbrief-science-of-ecd/

Hi my name is Michelle Long and I want to write to Virginia Disability Commission today I am here today to talk to you about Deaf children and Language acquisition Deaf children are born 95% of the time to hearing parents who never met a Deaf person before. For me it was different. I was born Deaf, and grew up here in Richmond, VA. My daughter was also born Hard of hearing and now she's a mother of my Deaf grandson who is now 3 years old. The state funds and policy gives many of these families services with hearing tests/hearing and speech services. But almost no resources for ASL nor ASL rich environment for my Deaf grandson to thrive just like his sister who hears. My daughter is frustrated that she has to fight so hard for ASL resources to be given to her son. It’s important to me because it’s totally unnecessary to continue the false dichotomy of “EITHER/OR” Give Deaf children EVERYTHING including Sign language. It affects all of us because language deprivation is a PREVENTABLE social-constructed systematic problem. I plead with you to support the LEADK Bill sponsored by the Virginia Association of the Deaf. This bill requires state agencies to track language acquisition during the critical age of birth to 5 years old in American Sign Language, and/or English. If the Deaf children are showing language delay during that critical period, the state needs to give funded resources for parents to learn signs if they choose, and to give more language exposure to that Child so the Deaf child can arrive at kindergarten ready for academics. Let’s end Language Deprivation amongst Deaf children in Virginia by passing LEADK Bill and track their language acquisition and give resources to families. Let my grandson have a robust group of Deaf and hard of hearing children to grow up with. Thank you for the opportunity to present to you today, and thank you for listening to my story. Thank you to Senator Hashmi who patron our bill.

Catherine Rey cgrierey@gmail.com 804-514-6317 My name is Catherine Rey, and I’m a participant in the Partners in Policymaking program living in Central Virginia. My State Delegate is Delegate Dawn Adams and my State Senator is Senator Ghazala Hashmi. I am writing-in today about the need for DMAS to permanently allow legally responsible parties, including parents like myself, to be paid attendants for their children under the age of 18, after this Appendix K flexibility ends in 2022. I am the mother to two young boys, JP and Louie, both of whom have a rare genetic syndrome called ATR-X. They are physically and intellectually disabled. At 6 and 9 years old, they are dependent in ways beyond their typical school-aged peers. In fact, they are dependent in all of their activities for daily living. And I am not a typical parent like many of my own peers: I am a caregiver, and up until the COVID pandemic and Appendix K, my boys’ Medicaid waiver enabled me to hire attendants but not be a paid one myself. Attendant care is a great resource on paper, but has often been inaccessible to us due to the challenges in retaining competent, reliable care able to accept the unproportional $10.50/hour pay rate. It is hard enough to secure one attendant, let alone two. I am often hiring someone to work with one boy, while I am still 1:1 with the other. I am both employer and co-worker, though I am paid for neither labor, and I have never been able to secure the consistent care necessary to work outside of the home. Instead, I have spent nearly a decade as my boys’ primary caregiver, at the expense of building a career and financial stability. I have become an expert in their non-verbal communication, transporting their non-ambulatory bodies, supporting their incontinence needs, changing out their g-tubes, managing medical supplies, facilitating therapy exercises, and so on. My continuity of care and interdisciplinary knowledge is what best enables JP and Louie to thrive in our community, within and beyond our home’s four walls. The alternative is institutionalization, an antiquated model that is more expensive for the state and damaging to families. Institutional costs of care will only compound over time, too, as my boys age and grow into more complicated needs. It is both good policy and fiscally responsible to pay parents from the start. I am asking to be compensated through the pre-existing Medicaid-funded waivers and attendant hours that my boys already qualify for for the skilled care I provide that keeps my kids at home and out of institutions. Families need stable resources, a range of options, and the autonomy to make these essential caregiver decisions. Advocates like myself are already partnered with The Arc of Virginia and are working with a House patron on this measure. We have approached a potential Senate patron, too. Please support families like mine by submitting a letter of support and joining our efforts in urging DMAS to make the Appendix K flexibility permanent to pay responsible parties. Thank you for your time today and the work you do to support Virginians with disabilities.

Good morning, my name is Jenny Witteborg. I’m currently a participant in the Partners in Policymaking Program and advocate for Virginia Association of the Deaf I am here today to talk to you about Deaf children and Language acquisition Most Deaf children are born to hearing parents who never met a Deaf person before their own child. The state funds and policy gives many of these families services with hearing tests/hearing and speech services. About 50% of Deaf children arrive at Kindergarten Language delay (John Eisenberg, Asst. Supt of VDOE presenting to VA Disability Commission, Nov. 2017). Many of these Deaf children have no other disability other than the systematic emphasis on hearing/speech services and no Deaf mentor/Deaf language modeling services. Sign Language is a full language and fully accessible, and would prevent language deprivation which can irreparably damage Deaf children on a lifelong basis. This is important to me because I was born Deaf to a Mom who already knew signs, but was told not to sign with me. It’s important to me because my Deaf husband was illiterate until he was allowed to learn signs around age 12 - he said he finally ‘saw the words’ that he could speak/and hear - as he could hear a bit. It’s important to me because it’s totally unnecessary to continue the false dichotomy of “EITHER/OR” Give Deaf children EVERYTHING including Sign language. It affects all of us because language deprivation is a PREVENTABLE social-constructed systematic problem. I plead with you to support the LEADK Bill sponsored by the Virginia Association of the Deaf. This bill requires state agencies to track language acquisition during the critical age of birth to 5 years old in American Sign Language, and/or English. If the Deaf children are showing language delayed during that critical period, the state needs to give funded resources for parents to learn signs if they choose, and to give more language exposure to that Child so the Deaf child can arrive at kindergarten ready for academics. Let’s end Language Deprivation amongst Deaf children in Virginia by passing LEADK Bill patron by Senator Hashmi and Delegate Carr to track their language acquisition and give resources to families. Thank you for the opportunity to present to you today, and thank you for listening to my story.

Hello. My name is Susannah Taylor and I live in Winchester, Virginia. Currently, under the COVID-19 flexibilities available to providers under the 1915c Waiver Appendix K Amendment, parents are temporarily allowed to be their own child’s paid caregiver. This measure is scheduled to end in July of 2022, and I am asking that this measure be made permanent. My daughter Isabelle is 10 years old and she has Charge Syndrome, which includes multi-sensory impairment, such as blindness and deafness, as well as overall cognitive developmental delay. She also has Lennox-Gastaut Syndrome which is a very rare and very severe form of childhood epilepsy involving multiple types of seizures that are extremely difficult to treat. The severity of my daughter’s needs makes it nearly impossible for me to be gainfully employed outside of my home and to still be “on-call” for my daughter 24 hours a day, which has forced us to be a single-income family. Receiving reimbursement for caring for my daughter these last months has made all the difference in the world. Despite the wage being significantly lower than what I could be earning elsewhere, the extra money I have been able to earn has reduced the financial burden my family carries. But I recognize that I am speaking from a place of privilege. What about parents who don’t have a spouse’s income to rely on? How are they to earn an income and care for their medically fragile child? In 1999, the United States Supreme Court said in a decision called Olmstead v. L.C. that persons with disabilities have a right to leave institutions and live in their communities, and in 2009, after ten years of slow movement on that ruling, the Department of Justice Civil Rights Division launched an aggressive effort to enforce Olmstead by expanding its meaning from getting people out of institutions, to assisting people to live in their own homes and engage in community life. Children with severe disabilities who come from single-parent homes are the most vulnerable to being re-institutionalized because many of their parents are unable to work and care for their medical needs, even with outside assistance. If the Department of Justice has indeed expanded the understanding of Olmstead v L.C. from getting people out of institutions, to assisting people to remain in their homes, then allowing parents to be their own child’s paid caregiver must be a part of that assistance. For some parents, it is the only way to earn an income AND keep their children in their own homes. Please join the fight that many parents are already engaged in and help us to advocate for this temporary policy to be made permanent. Thank you.