The proposed language purporting to extend paid parental caregivers may at first glance seem like a step forward, but in practice it would be a disaster for families struggling to care for their disabled minor children. Among the many “guardrails” that would block families from accessing this vital benefit:

1) EOR & LRI
The proposed language specifically prohibits a parent from serving as a paid caregiver if another LRI (for example, the other parent) is the EOR, and vice versa. However, the DMAS EOR manual explicitly states that the EOR for a minor child MUST be a parent or other legally responsible individual. This is as it should be - the EOR must be intimately familiar with the minor child’s private medical information, and must devote significant unpaid time to be trained, to approve shifts, and to communicate with the fiscal agent.

Even if DMAS changed the EOR manual to allow non-LRI EORs for minors, it’s ridiculous to assume that families can easily find another trusted local individual to take on this unpaid role in order to maintain a parent attendant. What about our military families? What about families who have relocated away from loved ones?

Essentially, this language will force families to choose between having a parent EOR or a paid parent attendant. This carve-out is so specific it almost seems as though DMAS is trying to purposely limit the number of families who maintain paid parent attendants - while giving lip service to extending this crucial accommodation.

2) Extraordinary Care
In the proposed language there are is a requirement to prove that our children require an “extraordinary” level of care in order to receive approval for a paid parent attendant. This boggles the mind - why on earth would our children have a Medicaid waiver and qualify for attendant care hours in the first place if they didn’t need an extraordinary level of care? The very fact that they passed the waiver screening and were authorized for attendant care hours should be evidence enough that our children have documented needs above and beyond their peers. This is just another redundant hoop for our overburdened families to jump through - again, seemingly designed to limit the number of families who are actually able to make it through the hoop and have a paid parent attendant.

3) EVV & Documentation
As parents of disabled and medically complex children, our caregiving responsibilities are intense, fluid, and constant. Unlike attendants who come and go for their shift, there is rarely a clear-cut beginning for our caregiving work, and there never seems to be an end. In recognition of our unique position, paid parent attendants were exempted from EVV and trusted to enter their time online during Appendix K. Walking this back and requiring us to start using EVV now is a slap in the face. And singling out parents with a requirement to document their caregiving tasks, unlike non-LRI attendants, is insulting, burdensome, and intrusive. You either trust us or you don’t. And this language makes it clear that you don’t.

4) 40 Hour Cap
This is perhaps too most infuriatingly arbitrary of the proposed changes. If families have been authorized for more than 40 attendant care hours per week, then there’s no legitimate reason to artificially cap the number of those hours that parents can be paid for. Is DMAS worried that families are somehow going to get rich from their attendant care wages? A family of four, with a paid parent caregiver as the sole source of income, would fall below the federal poverty line at 40 hours per week. The implication is that parent attendants can cost the state money by being overpaid - when in reality parent caregivers save the state millions of dollars compared to the cost of institutional care. It almost feels as though DMAS is trying to punish parents for reaching for the very lifeline DMAS claims to be throwing them.

The term “guardrails” appears over and over again in communications about the proposed changes. What goes unsaid, of course, is the reasoning behind this language, but we can read between the lines. Guardrails are supposed to guard against something - it’s abundantly clear that DMAS doesn’t actually trust families to oversee the care that we have diligently provided for our minor children for years, and fears that parents will somehow cheat the system. This is incredibly insulting, and reflects an utter lack of knowledge about the way life actually works in our homes and the many layers of oversight we already live with. The caregiving and management of care never ends! This is why Appendix K was such a lifeline, and why Virginia families were so relieved to see it adopted permanently, and why we are so utterly frustrated with the new proposed language. So the question is - do you ACTUALLY want to help us, or not?!?