As a single mom of an intellectually disabled child I have spent the last decade of my life dedicated to providing my child with the services and supports he will need in hopes he will one day be a productive member of society, rather than a drain on the taxpayer's dime. I have had to make the choice between sustaining my family and providing this support. Why should a parent EVER have to make that choice? With all of his required therapies and medical appointments we are subjected to over 20 hours per week of appointments.
As a William and Mary educated former professional, I was disenfranchised from the workforce BECAUSE I had to make this choice for my child. During COVID it was such a relief to not have to worry about trying to find someone to fulfill the role of PCA. When Governor Youngkin signed it into law it sounded too good to be true. Removing the consumer directed care option from parents and live-in caregivers is DETRIMENTAL to the health and welfare of these families. Restricting hours to 40 hours a week without respite or overtime, and forcing parents to work for agencies when you're only paying a pittance of $12.70/hour is going to decimate some of these families including ours.
Having researched surrounding states, I have found Maryland allows consumer directed care and Employers of Record are allowed to pay up to $65 per hour in certain cases where specialized care is needed. The EOR chooses the rate according to the needs of the individual. North Carolina pays up to $11.40 every 15 minutes or $45.60 per hour. West Virginia pays up to $21.80 per hour for home based services and even more for specialized care. What law and policy makers fail to realize is Virginia's pay rate for personal care attendants is dismal and completely tone deaf at best. In today's economy how is one supposed to survive on such a low hourly wage? Yet you policy makers wonder why it is so difficult for us to find QUALITY CARE for our loved ones.
My child is non-verbal. He cannot express to me, much less articulate a chain of events occurring in a traumatic incident. I do not TRUST anyone from outside my home to provide the level of care I can as his parent. Yet I am expected to, and then I am expected to hire someone at the pittance you all call a "pay rate" at $12.70 per hour to provide quality care. Caregivers at this level ask for $18-22 per hour and for those of us receiving this care, to supplement your pittance would have us convicted of Medicaid fraud.
Circling back to the beginning of my comment, with therapies and appointments each week totaling an excess of 20 hours per week, when exactly am I supposed to work? What professional level job is going to hire someone at a livable wage who needs to take that much time out of the week to attend these appointments? Personally, I've spent the last decade trying to figure this puzzle out. I've tried finding remote work to find most are scams. I've tried the entrepreneurial route six ways to Sunday, but legitimate opportunities require CAPITAL - the kind of capital someone living on this type of assistance can only dream of.
Finding someone to accept this wage was next to impossible. Caregivers at this level need to eat too, they also have rent and bills to be paid. Virginia's PCA pay rate is so low it equates to "supplemental" income at best - he kind of income you'd make at a part-time/second job. Yet you law and policy makers expect us to PROVE we've attempted to find quality care. Do you people expect us to also TRUST an individual making this pittance of a wage to attend those appointments and therapies and accurately disseminate information learned to us? Or are we supposed to again trust them to make medical decisions for us too? In order for us to be "approved" to care for our family members under this waiver, you expect us to provide you with this PROOF we can't hire someone qualified. And THEN, you want to cripple us further by forcing us to move to agency directed care where we will have to be TRAINED to do the job we already do EVERY SINGLE DAY OF OUR LIVES. In addition, these attendants wouldn't even be paid for the time SPENT at these appointments due to the fact the client is considered under the doctor's/provider's care from the moment they walk into the office until the moment they leave. It is not uncommon for these appointments to last 1 to 2 hours or more.
We are the MOST vulnerable population in society and you law and policy makers treat us as if we are the dregs of society - the bottom feeders. We DESERVE to not have to worry about how we're going to work to sustain our family members AND provide all this care to our loved ones simultaneously. Your demand for "oversight" is nothing but smoke and mirrors to take AWAY funding from these vulnerable families and put that money in the pockets of corporations. The oversight is already there. Every month we meet with our service facilitators to confirm we are conducting ourselves properly. Every quarter we are meeting with our care coordinators who determine our eligibility status. Stop treating us like we're trying to commit welfare fraud and try giving us back some of our dignity. I think I speak for most recipients of this waiver. We are simply trying to survive.