I want to thank DMAS for updating the recommendations and paving a way for parents of minors and spouses to continue to be paid caregivers for their loved ones. It’s a step in the right direction.

That being said, I am taking this opportunity to REALLY listen to families right now instead of just laying out guidelines that look good on paper.

We are one of those families who have looked for outside help for years to help support my son. He is the light of my life but he is a handful. At 14 he is getting bigger and stronger every day. That’s the thing about kids, they grow. The few caregivers that were interested in the position were either intimidated by his size and behaviors or they couldn’t pass the background checks. This doesn’t mean his needs simply vanished.

As a single mom I am in a position where I am used to little to no help. The arrival of my son’s Medicaid waiver was supposed to lighten our load. He was approved for 43 hours per week and I was eager for some relief. Unfortunately that never materialized. I can’t just leave him home alone while I work so I am forced to limit my availability to the hours where he is school. I also have to stay near him at night because that is when he is prone to seizures. I don’t expect anyone to do my job, but the little bit of help that we get with me as his paid caregiver make all the difference for us.

Limiting families to only 40 hours per week when they’ve been approved for more and requiring the use of the electronic verification system to click in and out when providing extraordinary care feels wrong. My son was approved for these hours based off of his needs. I realize that basic care that a parent should be giving any child of a similar age is not covered, but let’s be real - caregivers (especially parents) multitask.

While I am preparing dinner I am also constantly keeping an eye on my son to stop him from putting things in his mouth that might choke him. He is non-speaking so I am constantly watching for visual clues about his needs - even if I’m washing up the dishes. My son requires full assistance with personal care in all of his daily activities. How do I clock in and out, sometimes minute by minute, to differentiate between my on hours and my regular parental duties? I don’t think that parents are asking for something unreasonable when we ask to be paid for the full amount of hours our kids are approved for - especially when we can’t find someone else to work all those hours.

As for the electronic monitoring, I know many disability advocates have been telling you that this system is an invasion of their privacy. When I am caring for my son I am with him. Where he receives that care should be HIS business. Monitoring his whereabouts feels like an invasion of his rights.

The restrictions placed on who can serve as the EOR are also unduly restrictive. Not all families have someone who lives within 50 miles and isn’t a LRI. The EOR is an unpaid position and having this position gives that person access to some VERY personal information including the social security numbers of myself and my son.

 I beg of you to REALLY listen to families here as you work towards your final decisions on these matters. We’re drowning out here. Please don’t push us under.