Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
Previous Comment     Next Comment     Back to List of Comments
3/20/23  1:54 pm
Commenter: Anonymous

Parents as Caregivers and Waiver Pay

My son has been on DD/IFDDS waiver for 20 years. He just turned 30. During this time we have had over 100 attendants/companions. Because of the unpleasant tasks required for his care, the difficult behaviors he exhibits, the low pay offered, the delays in processing new hires, the constant delays at renewal time, and overall jumping through hoops sometimes required, it is virtually impossible to find, and keep, qualified attendants. 

I have been his primary caregiver, at first unpaid when he was young, and now paid as he is an adult, for the entire 30 years of his life because it has been so difficult to maintain consistent care by others. I did work from home PT doing CM/SF for about 19 months while he was still in school. Even then, if I was out of area doing home visits and an attendant called in, I had to cancel/reschedule visits, or desperately phone my husband, college aged daughter, or shift worker son to have someone home when he got off the bus. I don't even have that freedom now as my son and I live together alone in an apartment and I have no way to be a reliable employee for anyone else. 

During the pandemic we stayed home, both of us immune compromised, and I didn't attempt to hire other caregivers. We hardly saw family for two years. Now with vaccinations we have attempted to hire others to at least do a few hours a week with him so I can get a break and not work ALL of his hours. We managed to hire one of my adult sons who is able to work 12-15hrs/week. I posted an ad to my social media page (200+ people) and a local social media page (over 11K people), only received one response, scheduled an interview, she canceled and took another job. I also posted on the NextDoor app for all locals and only received messages wishing me good luck. I received a rude message telling me how stupid I was for trying to find someone to offer that level of care for that amount of pay. Target starting pay is $24/hr with insurance and benefits at 25hrs/wk. I can't compete with that. Businesses are bumping up their game for unskilled positions and I'm trying to hire folks for a difficult job for half those wages. It's just not possible. 

On the flip side, without other caregivers for him, I cannot work outside the home. If I am not able to be his paid caregiver, he (and I) would be at risk of homelessness and he would be at severe risk of residential/institutional placement (the exact thing the waiver is meant to avoid for him.) To be clear, I so appreciate the ability to be his paid caregiver, but the stress of the constantly increasing level of difficulty is truly taking its toll on me. I'm 62 years old. If I didn't work as his paid caregiver, it's likely the only job I could do at this point would be to be a paid caregiver for another similar individual while attempting to find another parent who would do the same for us. Is this really the choice we're about to be left to? As live in parent caregivers we actually have to give up the right to respite care. Now our only solution will be to care for each others children because it's being made difficult to care for our own. No one knows our (adult) children better than we do. No one tolerates the dirty parts, the tantruming parts, the difficult parts, the impossible parts the way we do.

My son has a psychiatrist now who only knows him as an adult patient for a few years. His long term psychiatrist retired. Even she doesn't know yet the behaviors he's exhibited so I'm not comfortable asking for a letter from her as "objective documentation." I know from my time as a CM/SF thar agencies don't have a lot of staff able to handle the behaviors. They have more nursing type folks. They generally offer to hire anyone I can send to them who can handle him. Terrific. So as a parent I need to work for an agency? That also seems like another unnecessary level of difficulty. That also makes the Difficulty of Care rule/2014-7 harder to navigate. Ask any parent who has been hired by an agency.

Some states limit a parent to 40 hours a week. Terrific. So that means, when we can't find someone to do the job, we are still paid 40hrs/wk and unpaid caregivers the rest of the time, still unable to work outside the home, so basically forced into poverty by a system that is already difficult to navigate. The main service facilitation company in VA is so overwhelmed that their services are bare minimum right now and, while ideally renewals should be sent in 30 days prior to give time for pending/unpending and PA to take place to avoid gaps in pay, it's not happening so attendants are going weeks/even a month or more, without pay when they're already living paycheck to paycheck. Please trust me when I say parents/family members are the only ones who are willing/able to tolerate that issue alone. Please help stabilize our families. Please allow our individuals and families to choose the best situation for them. Our lives are already difficult, stressed and often shattered because of our situation and adding another degree of difficulty is just unkind and unnecessary. 

CommentID: 212626