Crisis at the Committee: Why the Fight for Paid Parent Caregivers Can’t Wait
Plus: Advocates debate effects of Republicans' Medicaid cuts; First responders in Tahoe get special training on interacting with disabled folks
The members of the Oregon Senate Committee on Health Care won’t soon forget Tennyson Ross.
The 9-year-old has been going to the Oregon State Capitol for years with his mother Calli Ross to advocate for paid parent caregivers to minor children. But a medical emergency in the midst of the committee’s first hearing of the 2025 session last Tuesday led to a shutdown of the meeting and a flood of first responders.
Tensy is fine. Calli says it was “just” a plugged trach tube, meaning she had to quickly change out the medical device that allows him to breathe before he suffocated. Nevertheless, the committee members were alarmed and the Capitol officers escorted the family out, repeatedly asking them if they needed an ambulance.
An ambulance would have arrived too late. Calli — honed by years of trauma and experienced with this sort of issue — had already fixed the problem before anyone else could respond.
I found it fascinating to watch the video of the incident. You can see Calli quickly yet silently respond as Tensy’s alarms start going off. The people who noticed something amiss were the other medical moms in the audience — Alicia Bodine, who crossed the room, and Raelynne Virshup, who can briefly be seen in the righthand corner of the video. All three are wearing yellow shirts that read “Pay Parent Caregivers” in support of Tensy’s Law, SB 538. The Oregon bill would allow more “very high needs” children to access the tiny Children’s Extraordinary Needs waiver, currently serving just 155 children out of the more than 1,500 eligible.
While the medical moms moved into action, recognizing the crisis, the wheels of government kept turning around them. The meeting participants largely ignored the real needs going on while they talked about theories and statistics. Eventually, Sen. Deb. Patterson, the committee chair and another medical mom, stopped the hearing. The video disconnects but Calli tells me that committee members did then come to try to help.
I watched, helpless, separated by time and space. By the time I was able to see the video, I knew Tensy and mama were fine. But I still felt my body heat up and tears come to my eyes as I watched the drama play out on my tiny screen. It spoke volumes to me about how unresponsive government can be to the real suffering they are supposed to be addressing.
Calli said later that she was mostly embarrassed that she stopped the hearing and that she found it annoying that people kept asking her if she needed an ambulance. This was not that big a deal to her. Our everyday life is a series of trials, most of which we don’t talk about publicly. That’s partly because of our children’s privacy, and partly because most people JUST DON’T GET IT.
Senator Tensy will be back in Salem on Tuesday, Feb. 4 in the same committee to advocate for the bill with his name. It just so happens to be his 10th birthday. Maybe the Oregon legislature can give him the birthday present he deserves — the ability to pay his mom to perform the life-saving and life-improving care that she does for him every day.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Disability Scoop: “Trump’s Return Sparks Worry About Cuts To Medicaid, Disability Services”
Disability advocates are preparing to fend off potentially seismic cuts to Medicaid and community-based services now that President Donald Trump is back at the White House and Republicans are in control on Capitol Hill.
Republicans in the U.S. House of Representatives are reportedly circulating a “menu” of possible options to slash more than $5 trillion in spending in order to fund tax cuts and other Trump priorities. Options outlined in a document obtained by Politico show that up to $2.3 trillion could come from Medicaid.
If such cuts were to become reality, that would represent nearly a third of projected Medicaid spending over 10 years, according to KFF, a nonprofit that conducts health policy research.
[…]Advocates have been warning for years that the Medicaid home and community-based services system is under extreme pressure. A recent survey of hundreds of disability service providers nationwide found that 69% turned away new clients and 39% closed programs or services in the previous year and over a third said they were considering additional program cuts.
Among the options that Republicans are reportedly weighing is shifting Medicaid to a “per-capita cap system.” Currently, the federal government provides matching grants to states to help pay for the cost of care for anyone eligible for Medicaid, no matter how expensive. But, under a per-capita cap system, the government would provide a set amount of money for each enrollee leaving states to make up any difference in cost.[…]
• From Tahoe Daily Tribune: “Disability training for first responders is a first for Tahoe”
Loud sirens, flashing lights, and strangers in your home can be a disorienting experience for abled children facing an emergency. For disabled children, it can be a harrowing or even traumatic experience. It’s been Jen Drennan’s passion project for many years to educate emergency responders on how to handle situations when disabled children or adults are present.
Now, she’s officially done her first run of continuing education Courses for Lake Valley Fire Protection District (LVFPD) and South Lake Tahoe Fire Rescue (SLTFR)—which will be expanding to law enforcement training and a 911 registry for the community.
Drennan has credentials on two fronts: she’s been a critical care provider for many years and her daughter is medically complex and disabled. She was born with stage 4 cancer, which led to her developing autism, becoming developmentally delayed, and physically disabled.
[…]Her daughter’s struggles highlighted a glaring gap in trainings—how to handle disabled children who may have complex needs and different styles of communication. Mike Taormina, fire captain and paramedic, said, “I’ve been a paramedic since 2009, and this is my first time getting this kind of targeted training.”
[…]The training is a two-hour event that Drennan says only scratches the surface of the topic. Still, she emphasizes three major points in the first hour: listening to caregivers, being mindful of a spectrum of disabilities, and lessening stress where possible. “It’s not brain surgery—it’s being kind and patient and getting the caregiver on your side,” said Drennan.
[…]Drennan acknowledges that for many in her trainings, this might be the first time that first responders are getting the chance to speak candidly with disabled people and their caregivers. “For a long time, disabled people were kind of hidden and not acknowledged. But it’s important to have people interact with these kids, see what kinds of needs they have, and recognize that they’re out in the community,” said Drennan.[…]
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