I want to echo the many voices that have raised up their concerns and, frankly, alarm at the backward steps Virginia would be taking if it accepted this proposed waiver application.
When this application was dropped for public comment and review, I watched families and individuals with disabilities reel in shock. I watched my family reel in shock and horror at changes that were being suggested. As if living through a global pandemic and navigating some of the most complex times of our lives wasn’t enough, someone had put down in words an attempt to reverse the slow progress and movement for individuals with disabilities being supported in their own community and their own homes.
I watched a nation mourn the loss of Judy Heumann and the pivotal work she accomplished during her life span. In shock, I also watched an echo of the same battle repeat itself in my own backyard through this application.
Some areas of deepest concern related to this FIS and BI Waiver application for me are:
Adding additional burdens to the family or individual to document. The application states there needs to be, “objective written documentation presented at the time of service authorization that demonstrates that there are no other alternatives to the legally responsible individual providing the care and that there are no other viable service/provider alternatives.” To what end does this documentation help the individual or the Commonwealth? Aside from the additional burden being placed on the individual or family’s plate, you are creating an additional burden for someone to review and approve this documentation. Furthermore, that additional layer has the potential to create further backlogs and cost taxpayers additional dollars.
"Limits are placed on the legally responsible individual's provision of paid care. The legally responsible individual must be employed by a personal care agency, and thus meet all of the same requirements as other personal care aides. Legally responsible individual aides shall also be limited to provide 40 hours of compensated care per week." (pg 175). There are several areas in this section that concern me and, frankly, should concern those in a position of power too. Raising a child with complex medical needs equals every minute of a parent’s day is allocated to providing that care. While on paper adding the limits proposed feels minimal, the reality of these limits has the potential to drastically and irreversibly damage family systems and care for these families. Asking a family member to take time out of the home/away from the child/shifting medical appointments/not providing care in order to go through the process of locating a personal care agency that will employ them, onboard them, ‘train’ them, and supervise them is equal to the opposite of what this measure describes. But to further complicate the lives of the most vulnerable in the Commonwealth, these same family members must meet all the same requirements as other personal care aides. This sentence feels too vague and the level of interpretation vast. Instead of providing care for the young person, you are asking family members to travel, complete paperwork, background checks, onboarding HR trainings, basic medical trainings, specific medical training based on the diagnosis or medical conditions they already were providing care for, other professional development trainings, and more. This paragraph then contradicts itself with putting down a 40 hour limit on compensated care. I implore you, sit with the ramifications of this section for a moment to realize the layers of burden this places in both the home, the personal care agency office, and the Commonwealth in tracking this documentation. Personal care agencies, like so many other companies, are already faced with staff shortages and other challenges. The influx of ‘employees’ create more responsibilities for them, but does not address any of the issues they were already trying to solve.
I could fill this comment with more and more concerns, but I would ask that we partner instead to find a better solution for this application draft. Partner with families across the Commonwealth in writing the revisions of this application. Have the members of the Commonwealth - the consumers of these proposed services -who are directly impacted at the table. Let their voice be heard in decisions that, ultimately, impact their right to choose who provides their care. Sit with consumers/families in their homes and understand the actual needs over making conclusions based on presumed understanding of situations.
Virginia, it is time that we do better than this. Instead of making national news for, yet again, lagging behind in disability rights or continuing to fall behind in serving others. Virginia - let us instead work together to create a system that fosters collaboration and cooperation to meet these unique needs.