Despite our eligibility for help, there is currently in Vermont a 50% hi-tech nursing shortfall, and compensation for high-tech nurses runs on average $10/hr less than that for hospital nurses. This situation is even more dire now with COVID-19. Now that home-health aids and nurses are not allowed in our homes, our most vulnerable population's health is at risk and an unsustainable strain is on our families. We have an obligation to keep individuals with disabilities and life threatening illnesses well enough at home so that the hospitals and understaffed healthcare systems do not become additionally overburdened during the Coronavirus pandemic.
Our daughter is an amazing 14-year-old child living with Krabbe Disease, a rare hereditary degenerative neurological condition that is typically fatal by age three. She has frequent seizures, is unable to move or speak, yet appears to be developmentally age appropriate in many ways. She requires complete bodily care at all times, and attentive respiratory therapy when ill. Despite her many health challenges, we have required but five visits to the local hospital's Pediatric intensive Care Unit over the years due to a diligence of care that has taken a heavy toll on our family. Despite qualifying for High-Tech nursing and being enrolled in the Pediatric Palliative Care Program since its inception in Vermont seven years ago, nursing support for our family has been sporadic, often not available
for months at a time.
Here are the 3 critical mitigation strategies necessary to support the most vulnerable population in their home care setting:
1. Update the State of Emergency Executive order to waive the restrictions against parents and guardians utilizing their family's existing budgets to provide medical and personal care to their dependent.
2. Add Personal Care Assistants and Home Nursing to the list of essential workers, so they can be utilized where possible AND determine how they can be paid while not working for us so we can retain them for post-pandemic.
3. Remove or expedite processes to approve parents and guardians as caregivers authorized to charge time against budgets including Developmental Services Waivers, High Tech Nursing Care, Children's Personal Care and other relevant care budgets.
We urge you very strongly to act in concrete ways to alleviate this very real problem.
Tom Schicker and Kirsten Isgro
124 Park Street Burlington, VT 05401