Dear Virginia Department of Medical Assistance Services,

Countless parents of children with disabilities in the Commonwealth of Virginia worked so hard last year to get legislation passed through the Virginia General Assembly that would allow parents to be paid caregivers for their own children with disabilities on a permanent basis, a measure that was temporarily made possible during the Federal Public Health Emergency during the COVID 19 pandemic, but that was due to end upon its conclusion.

As the FPHE is ending, it is your job to take that ruling, which we were successful at getting passed and which was signed into the state budget by Governor Youngkin last Summer, and make it a reality for Medicaid Waiver recipients and their families. But instead, what you are proposing to do is to put so many regulations in place surrounding this option so as to make it nearly impossible for any parent of a child with disabilities to qualify for the position to care for their own child. This is in direct violation to the spirit of what that legislation was supposed to do for Virginia families.

The following are the 4 main objections I have to the new regulations that DMAS is proposing regarding Parents as Paid Providers for their own children with disabilities:

1. DMAS wants parents of children with disabilities to prove that no one else is available to care for their child before a parent can qualify to do so. This is an unreasonable expectation that directly harms families because a) some children don’t do well with outside caregivers, b) it increases the risk for illness and injury to an already vulnerable population c) some parents cannot work outside the home even if they do have an outside caregiver, e) it causes those families undue financial stress. Having an outside caregiver works great for some families, but for others, it does not. Families need to be given the CHOICE to do what is best for themselves regardless of who else may be available to care for their children.
2. DMAS wants to eliminate the Consumer Directed option for parents which allows them autonomy in their employment and caregiving responsibilities. This would force parents to have to qualify as employees of outside caregiving agencies with all of the certifications and training required for those positions, only to then be assigned back to care for their own children. This is an unreasonable burden to place upon this population. Parents in these circumstances simply do not have the time, money, or resources necessary to get such certifications. And why should they have to? They are already the world’s experts at caring for their own child.
3. Parents will be capped at 40 hours a week regardless of how many hours their child’s Medicaid Waiver has allotted them, but they won’t be able to hire someone else to use those extra hours because that would be proving that they CAN find an outside caregiver, thus making themselves ineligible for the position to start with. This prevents waiver recipients from using all of the hours allotted to them.
4. Under the new regulations, parents cannot hire someone else to use their child’s Respite Hours because that, again, would prove that they CAN find someone else to care for their child, thus making them ineligible. So these respite hours will go unused and the waiver recipient will therefore lose those hours. But who needs respite more than a full time caregiver? Especially one who is a family member?

And now for a word about fraud. Historically, DMAS has been resistant to parents being paid caregivers for their own children because of the risk of fraud. I propose that there is actually very little risk of this because the safeguards necessary to prevent it are already in place. Unlike with outside caregivers who have the opportunity to claim hours that they haven’t worked, parents are already working more hours than the amount their children are allotted, so any hours that they claim, they will have worked. Additionally, service facilitators come into their homes every 3 months to re-evaluate their children to make sure they are still in need of the hours they have been allotted. And in addition to that, the app through which caregivers submit their hours is programmed in such a way so as to prevent them from claiming more hours than their children are allotted. Parents of Medicaid Waiver recipients simply cannot claim more hours than their children are allotted– even if they tried, and they already work more hours than their children are allotted, so where is the risk of fraud?

Please do NOT put these new regulations in place. Allow parents to continue to be paid caregivers for their own children using the Consumer Directed option if they so choose, don’t require them to prove that no one else is available, allow them to use all the hours their children are allotted through their Medicaid Waivers, and please allow them to hire part time caregivers to give them the respite they are all so desperately in need of.

DMAS’ new regulation paints parents into a corner and makes it nearly impossible for them to continue to be paid caregivers for their own children with disabilities despite the legislation that was passed last year by the Virginia General Assembly. The Medicaid Waiver program is supposed to help to alleviate the burden that special needs families carry, but these new regulations directly harm them instead.

Please help Virginia families and do not put these new regulations in place.

Thank you,

Susannah Clarke