From Paid to Forgotten: A Parent Caregiver Crisis

Hello, I’m your host, Mark Ingrassia and This is Special Ed Rising,PURGE 47 Edition, the show that keeps a close watch on government actions impacting the disability community. If you’re here, you already know that when policies shift and rights are on the line, we can’t afford to look away.

Today... I’m pulling back the curtain on something that strikes at the core of disability rights, economic justice, and the dignity of caregiving.

During the pandemic, parents of children with significant disabilities stepped into a new role—recognized caregivers, paid for the work they were already doing around the clock. And for many families?

That paycheck wasn’t just helpful—it was the difference between making it and breaking down.

But now? That support is disappearing. Quietly. Quickly. And families are, once again, being left behind.

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Stay tuned, stay informed and stay ready. Because this fight has just begun

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So here’s the background: During the COVID-19 pandemic, we saw a massive caregiver shortage. Agencies couldn’t hire fast enough, and many kids with complex needs were left without support. That’s when many states said, “Okay, let’s pay parents—especially those already doing 24/7 care.”

And you know what? It worked.

Parents stepped in, legally, to provide in-home care under Medicaid waivers. They were finally recognized—not as babysitters, but as the expert caregivers they are. Feeding tubes. Seizure protocols. Behavior supports. Toileting. Medication. Real caregiving. Expert caregiving. And for a moment, the system saw that. These were parents managing seizures, feeding tubes, lifts, meds, meltdowns, midnight monitoring.

But now? Many states are rolling those programs back.

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Let’s break it down by state.

Colorado—they're one of the few states doing the right thing. They made the parent-caregiver option permanent. Families can be paid for up to 10 hours a week to care for their children through the Medicaid waiver. It’s not huge—but it’s something. And it means stability. Dignity. Recognition.

Oregon—they launched a pilot program that pays parents for up to 20 hours a week. But there’s a cap: only about 155 families can access it. And here’s the kicker—more than 1,300 families qualify. So hundreds are just… waiting. A bill called Tensy’s Law is aiming to fix that—expand the program and fund it properly. That’s something we’re watching.

n the works to change that by: 2026

And then we get to the harder stories.

Indiana—They not only cut back, they revamped the system. They eliminated hourly pay and replaced it with a flat daily stipend. That sounds okay… until you realize families lost thousands in income. The same families already living paycheck to paycheck while providing full-time care. A federal lawsuit has been filed—alleging discrimination and Medicaid violations.

According to Disability Scoop and reporting by the Idaho Statesman, Idaho had a pandemic-era exemption in place that allowed parents like Nathan Hill to get paid through Medicaid to care for their disabled kids. His son Brady needs round-the-clock care due to a stroke and brain cancer. When the exemption was active, Nathan was finally able to step in full-time—no more scrambling for unreliable outside help, no more strangers cycling in and out. Just solid, loving, skilled care at home.

,: 2025

The program ballooned from $6 million in 2022 to over $24 million by 2024. At first, the state pointed fingers—suggesting fraud was to blame. But that narrative didn’t hold. They later walked it back, admitting that the cost increase likely came from more parents enrolling—and from an ongoing, devastating shortage of direct care workers.

So now? Families are scrambling.

There’s a 125% turnover rate in Idaho’s caregiving workforce. One hundred and twenty-five percent. That means for every caregiver hired, more than one is leaving. Parents like single mom Shannon French have lost so much income they now qualify for food stamps—just to make ends meet. Others are cobbling together gig work or absorbing unpaid caregiving full-time, without support.

And here’s the thing: Parents didn’t ask for a blank check. They asked for oversight.

al and money. And thanks to a: 2024

Senator Julie VanOrden admitted that the program, as it stood, wasn’t sustainable—but even she recognizes the need for something new. There’s talk of a state-funded solution outside Medicaid, but right now? It’s just talk. And families are sitting in the fallout.

Let’s call this what it is: abandonment by policy.

Idaho’s decision didn’t just remove income. It removed stability. It sent the message that the work parents do—lifting, bathing, de-escalating, feeding, monitoring—isn’t worth compensation. That it was temporary. That it was disposable.

But it’s not.

Caregivers don’t turn off when the pandemic ends. Needs don’t disappear when waivers expire. And we can’t let this kind of rollback happen quietly.

The only way we build back better systems is if we speak up when they fail—and keep showing what it looks like when they work.

So here’s the takeaway: Some states are stepping up. Some are stepping back. And families? They’re still standing in the gap—doing the work, with or without pay.

But they shouldn’t have to do it alone.

From the Wisconsin examiner; Medicaid cutbacks will affect unpaid family caregivers, experts warn” by : Erik Gunn, Reduced Medicaid care means more unpaid care

Family caregivers feel Medicaid’s impact in several ways. For many people who are elderly or have disabilities it enables them to get paid, professional care at home. If that care is cut back, that means more work for the unpaid family member.

“Those paid caregivers — they’re paid for by Medicaid dollars and there aren’t enough of them. There haven’t been enough of them for years,” Janet Zander of the Greater Wisconsin Agency on Aging Resources said. If Medicaid cutbacks reduce the pay for those caregivers, the workforce that is already underpaid is likely to be even harder to find — making access to paid care even more difficult, she added, to the point where “it’s either the unpaid caregiver or nothing.”

Family caregivers who take on more unpaid care responsibilities may have to cut back on their own paid jobs.

“The amount of people who are reducing, limiting [work hours or] leaving the workforce because there isn’t a stable, paid caregiving workforce to provide what they need is huge,” said Jackdson Zander also of the Greater Wisconsin Agency on Aging Resources .

A Board for People with Developmental Disabilities. (BPDD) survey found that for unpaid family caregivers in Wisconsin providing or coordinating care or filling in for missing care workers took 80% of their time. Two-thirds said caregiving had a negative impact on their family finances and 50% said they left jobs or reduced hours to provide care because there were no care workers to hire.

Unpaid caregivers who leave the workforce not only lose income but reduce the earnings that contribute to their Social Security retirement, Jackson Zander, also of the Greater Wisconsin Agency on Aging Resources said.

This isn’t about luxuries. It’s about keeping families intact. Most of these parents aren’t choosing between a paycheck and caregiving—they’re choosing between poverty and even deeper poverty. Many have already left their jobs, their careers, their stability… to meet their child’s needs.

And if the state won’t provide a nurse, and won’t pay the parent to step in, what’s the alternative? Institutional care? Foster systems? More ER visits? We know where that road goes—and it’s not cheaper, not safer, and not in the child’s best interest.

I want to mention NY because that’s where I am from. New York allows paid family caregiving, but not from parents of minor children.

The HCBS waiver supports home care needs but doesn’t compensate parents for caregiving roles.

Advocacy continues: the Complex Care Act could provide a model for paid, trained parent caregivers if passed.Times Union+4Reddit+4nypost.com+4nypost.comotda.ny.gov+4Wikipedia+4New York State Department of Health+4

The CDPAP transition to a single fiscal intermediary (PPL) has sparked major concern over lost choice, reduced responsiveness, and payment instability.nypost.com+3Times Union+3Reddit+3

New York hasn’t mirrored Idaho’s paid parent model—and in fact, current policy explicitly excludes parents of children under 21 from getting paid via CDPAP or Consumer Directed Personal Assistance Program. Families seeking paid caregiving for minors remain unsupported under existing Medicaid structures. Legislative advocates and families are still fighting to change that.

This is why advocacy matters.

Because the bottom line? Parents are caregivers. They always have been. And when systems recognize that with financial support, families stay whole.

When they don’t? We all pay the price.

As a couple of people have called me out for fear mongering in recent Purge episodes I want to very quickly provide the federal government's likely counter argument.

Cost Control & Medicaid Sustainability

COVID-era caregiver pay caused massive cost spikes (e.g., 400% in Idaho)

Long-term funding for such programs is not financially sustainable

Fraud Prevention & Oversight Concerns

Lack of monitoring systems (e.g., EVV, audits) increases risk of abuse

Rapid enrollment during pandemic made quality control difficult

Professional Workforce Undermining

Paying parents may weaken efforts to build a trained direct care workforce

Could lead to stagnated wages and fewer jobs for non-family caregivers

Emergency Waivers Were Temporary

Appendix K was designed for short-term flexibility during a crisis

Permanent changes should follow legislative/regulatory review

State Authority Over Medicaid Implementation

Federal government provides guidance and funding

States decide whether to continue parent caregiver pay models (e.g., Colorado kept it, others didn’t)

Everyone has the right to question what I’m saying. I use public sources for my material. When I was questioned about my sources I gladly provided them and asked for the objector’s source(s) and I never heard from them again. I’m just doing my best to inform. Always feel free to question but please come with your sources.

Thanks for sticking with me today. If this episode hit home for you—if you’re a parent caught in the middle of these policy shifts—please know you’re not alone.

We’re going to keep shining a light, keep telling the truth, and keep raising our voices—because No Parent Should Be Left Behind.

You can find links to today’s sources in the show notes—i

Thanks for listening! I hope you'll tune in each week for topics that inform, inspire, or hit close to home. May this podcast boost your confidence, spark self-love and mindfulness, and help you model positivity for your kids—while caring for your own mental, physical, and spiritual well-being.

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