Dear All Public Service Leaders and Workers,
I am a mother of a child that receives services through the EDCD waiver of VA due to my child needing regular assistance in completing activities of daily living related to him having significant special needs and complicated health issues. I am imploring all reading this message to continue to advocate, serve. and protect these vulnerable children who receive the above services by voting to continue Appendix K services and protect the parents’ and other family members ability to remain their constant caregiver and attendant position.
The implementation of Appendix K regulations is a positive, innovative, and incredibly effective solution to the problem of being unable to have attendants come into the family home due to the risk of COVID 19 during the pandemic. I understand that for most people, the risk of having serious health complications from COVID 19 has thankfully greatly decreased with the use of vaccines and new treatments. However for many families with children who have immune disorders, are immunocompromised, and have auto immune diseases, COVID 19 continues to present a serious health threat to the well being of the child and their family. My son is diagnosed with both an immunodeficiency disorder and an autoimmune disease and our family must continue to follow strict COVID-19 prevention protocols ( like mandatory masking, avoid as much as possible crowded and indoor places, and be up to date on vaccines and boosters) in order to best avoid any exposure to COVID 19 for his safety. He also attends a virtual, synchronous online school program that is accredited by the Virginia Department of Education due to him being unable to safely attend school in the brick and mortar building at this time due to his risk of having serious health complications due to COVID 19. We therefore cannot allow an attendant outside the immediate family to come into our home and care for him because it will definitively and significantly increase his exposure to COVID 19.
The effects of discontinuing the Appendix K regulations would result in many children, like my son, potentially losing their EDCD waiver benefits due to the family being unable to employ an attendant resulting in the child being noncompliant to the requirements of the EDCD waiver. Losing the EDCD waiver benefits would also cause the child to detrimentally lose their essential VA state Medicaid benefits since their ability to qualify for Medicaid is tangible to their enrollment in the EDCD program. My son uses Medicaid as his secondary insurance and despite him having an additional primary health insurance, his father and I could not afford all the copays associated with his many medical appointments, hospitalizations, specialty medical appointments with specialists, multiple therapy services like physical, occupational, speech, ABA, and feeding therapy, medical procedures and tests, medical equipment, and multiple medications. The discontinuing of Appendix K will absolutely have a devastating impact of the quality of life for my son by precariously effecting his eligibility in the EDCD waiver program and therefore jeopardizing his vital medical care and preventing him from accessing crucial specialty medical services and necessary acts of daily living care.
It is also imperative to note that many recipients of attendant care that are older children and adolescents do not feel comfortable having an attendant that is not a family member assist them in acts of daily living due to the personal nature of the required tasks. These children and adolescents deserve to have the human right of being assisted with their acts of daily living in a manner in which they have a voice in who helps them with these personal care needs in a way that demonstrates dignity and respect.
Appendix K is truly a lifeline for the vulnerable and special children, and they’re devotedly caregiving families for which it serves. I want to say Thank you to all the public service leaders and workers who work tirelessly every day advocating for all children and adults with special needs to be provided all of the medical and social services needed for them to life safe, healthy, and joyful lives. Your work in social services is greatly appreciated and my son and I are grateful for this opportunity to make our voices heard and show how essential your work is and will always be to all the lives you help every day!
Sincerely, Valerie Smith