As the mother of two young boys with multiple and profound disabilities, I am very concerned about DMAS’s proposed guidelines that would only further complicate an already cumbersome resource of support that is to be found in attendant care. DMAS does not seem to intimately understand the lifestyle of families like mine and the layers of barriers we face in accessing competent and consistent care for our children, nor do these guidelines suggest that DMAS trusts parents and sees us as the experienced and most reliable providers that we are.
At 7 and 10 years old, my boys are dependent in ways beyond their typical school-aged peers. In fact, they are dependent in all of their activities for daily living (this includes transporting, toileting, and feeding) and need 1:1 support to access their community and to live active and full lives alongside their classmates and friends. I, too, 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.
The reality in our household is that because my boys require 1:1 care and because attendant care is difficult to access (re: unproportional $12.70/hour wages for the nature of the job), I am most often providing 1:2 care or can only secure one attendant at a time so that we are each providing 1:1 care; either way, I’m the common denominator: always there to provide the care my children depend on. The demographic we have found the most attendants through has been graduate students in related fields at our local university: OT, PT, or special education. They’re usually fitting in the attendant care work between their classes and clinical work, and although we’ve been fortunate to have some wonderful attendants who find the work with us to be companionable to their education, they can only stick around for a year or two before they graduate and go on to get a “real” job. The care is helpful when it’s available but only being able to find half the care I need on a part-time basis does not allow me to work outside of the house. Appendix K has afforded me an income for the work I was already doing and will continue to do day in and day out because what is most important to me and my children is that they live in our home and within our community, not an institution. For some families the flexibility has given them options to choose the best caretaking scenario for their child(ren); for us, it has provided a life-line.
However, DMAS’s proposed guidelines would only impose additional burdens to families like mine while stripping us of our autonomy and our minor children’s access to consumer-directed services. When a parent is able to be their child’s (or in our family’s circumstance, children’s) paid provider, there is less risk for abuse by outsiders and there is greater opportunity for continuity of care (the low wage of these positions prohibit retention). Being a paid provider also means that I am able to join the workforce and have dignity in the work I do each day while financially contributing to my family and our local economy. DMAS wants us to spend the time we would be caring for our children instead exhausting existing resources we may not even be interested in and providing written documentation that there are no other alternative providers, despite the fact that many parents want to be their children’s providers, knowing we’re the most capable and reliable.
Further, DMAS intends to distinguish parents who are paid providers from other attendants by imposing an arbitrary limit of 40 hours per week on parents, no matter what the reality of an individual’s care needs are; taking away eligibility for respite hours, even though being a paid provider is arguably exactly the reason why a parent would need respite; and requiring that parents are agency-directed rather than consumer-directed, which would force parents to be trained by outside agencies on how to care for their own children when, in fact, parents are the experts on their own children. There are already safeguards set up to ensure that any personal care attendants follow regulations; parents do not need additional requirements.
DMAS, please listen to us parents and hear us when we say these guidelines are offensive, burdensome, and limiting to what we should all be here for: providing the best quality and most consistent care for minor children in Virginia with disabilities so that they may live the lives of their choosing in their own homes and communities.