Support Paid Parent-Caregiving — It Just Makes Sense

— guest post by Matt Millard, IT system engineer/analyst —

To my fellow union members: There is an issue that is dear to me that I want to fight for. I have never written anything like this before, but I feel moved to try, so I hope you will be patient with this blog post. What I am about to write is an emotional appeal, which is what I feel qualified to make. I feel moved to try to convey to you all how important this is, and how it connects with the principles our union fights for. If you choose to read it, know that I truly do appreciate it.

I am a parent of a pretty severely disabled boy, as these things go. Persons with disabilities, like my son, get help from Medicaid, including paid hours for caregivers. My particular window into this world is about parents of kids with disabilities, so I can’t speak for how adults with disabilities are affected. We have been trying to utilize these hours for years, since my boy was four. Most of us parents can’t actually use the hours we get — it’s like a full-time job hiring, training and scheduling the caregivers, and they leave all the time. It’s never-ending and it’s a difficult job just being a parent, let alone a special-needs parent. The caregiver hours are helpful to be sure, but most people only used a small fraction of the benefits — that’s just how it was.

 
 

When COVID happened, things got even worse. After a while, parents asked for the ability to bill for those hours ourselves, to be paid to be caregivers for our children the same way other caregivers are. In February 2021, Oregon parents of disabled children were granted a temporary allowance to serve as the paid caregivers for their own children.

Special-needs kids are like other kids in many ways, and the lack of child care hits our families the same as it does for any other family: there isn’t enough and it’s too expensive. But often, our kids can’t go to any daycare, and often not even to school; even if they can, parents have to spend time fighting a hundred little battles with schools and doctors and insurance companies. Again, the same as any parent, but just multiplied. So you almost never have two-income families, since one parent has to stay home and do the caregiving work. And as we all know, it’s expensive out there, and one income usually isn’t enough, not to thrive. So life was just a permanent crisis for so many families of disabled children. Single-parent households were in an even more desperate state.

When some special-needs parents were allowed to bill Medicaid as caregivers, the effect on the lives of my peers, the other parents in this community, was transformative. When they started getting paid for the hours by Medicaid, it completely changed their lives. Many of these families saw their income double, moving them from living hand-to-mouth to just being poor. These are people who give everything for their kids; they give up careers, and dreams. Again, I know it’s not a different story than the one many of my fellow union members likely know by heart — it’s just the same story dialed up to 11. But when these parents got a little room to breathe, they started to see so much that they could do to make the lives of everyone in their families better, and they could invest in a million small things that they usually would have to wait six months for insurance to pay for or would just live without. They could just pick and purchase the items their children actually need, rather than what was offered to them.

This caregiving allowance for parents is currently set to expire when the federal public-health emergency ends on July 15, and hundreds of families will fall off a fiscal cliff. Oregon’s Medicaid Advisory Committee unanimously approved sending a strong letter of support for paid parent caregiving to Governor Kate Brown. Even though this program is scheduled to expire, the administration is playing games, refusing to meet and bullying the people who support it. Parents have asked repeatedly but have yet to hear from Governor Brown regarding a direction forward. Speaking for all of us parents, I can say that we don’t begrudge the work; we’re going to do it regardless and for much longer hours than whatever hours Medicaid has allotted for caregiving — these are our kids! This isn’t about me personally, because I will be fine regardless, but there are hundreds of parents who won’t be. And there are thousands of parents who are also performing this unpaid labor for their disabled children who don’t qualify for this limited program.

We found something that works. Why do they want to take it away? Why wouldn’t they want to expand it to all children who qualify for in-home supports?

I have included a few links below to resources, with facts and stories other than my own, that explain the situation in greater detail. There’s a template for a letter you can use to send to your lawmakers if you feel moved to do so, and I have also linked to an online petition you can sign.

Resources:

We parents have become a movement around the issue — a small one to be sure, but a movement! In March, 25 carfuls of us marched on the Oregon Capitol. We meet multiple times a week, and make plans for the future. As you can see in the resources linked above, we have a massive level of support, including from lawmakers and community leaders. I see so much in common with the mission our union lives every day, trying to make things better for our members. I feel like we are fighting the same fight. Local 328 voted to formally endorse our movement at a recent board meeting, and I hope you will feel moved to help us too!

I appreciate you taking the time to read this. The resources links will tell you about this movement better than I can, but hopefully I have made the case for why our union and its members might find common cause with this. Again, if you feel it would be appropriate, please consider signing the petition and using the template to send your lawmakers a letter. I and the other parents would really appreciate your help. If you have any questions, please ask them in the comments and I will do my best to answer them.

**Contact information for Oregon’s legislators can be found here. Representatives Nosse and Rayfield and Senators Gesler Blouin, Leiber and Steiner Hayward are the ones who most need to hear this message, but it would be great to send the letter to any legislators you’re normally in contact with.

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