Parents of disabled children rally for caregiver funding bill

By Chandler Watkins

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    PORTLAND, Oregon (KPTV) — On Thursday, parents of disabled children across the state gathered at the State Capitol in Salem to urge lawmakers to advance policies and funding for parents to be paid caregivers to their extremely disabled children.

“It is more than just a bill to us,” said Calli Ross. “This is truly life or death for our kids.”

It comes after hearing that Senate Bill 91, which would have made a temporary program allowing parents to be paid caregivers to their disabled children permanent, would not be advancing this legislative session. Now, they are asking lawmakers to add the funding and policies to the end of session reconciliation bill along with a budget note to allow ODHS to move forward with applying for the waiver needed to establish a permanent program.

“It was not put in a subcommittee so that bill is currently dead,” said Ross. “What that means is we have nothing. So we are currently fighting for a budgetary note. Representative Courtney Neron has put out a letter asking for her colleagues to support this. It will go through Ways and Means on Friday and we have every hope that they will at least pass a budgetary note so there’s the support to start this program. It’s desperately needed in the state of Oregon. We are looking at institutionalizing our children in a state with no institutions.”

The temporary program started during the pandemic due to a shortage of caregivers across the country and to curb the spread of COVID-19 to vulnerable children. Several states have since made the program permanent. Ross and others say it’s been life changing for them and their kids.

“The past few weeks my little guy and I have spent nearly every day at the Capitol,” said Ross. “We’ve talked to every legislator, we’ve told them our story, and how desperate families are for this program to continue. It’s a COVID-era program that turned out to be the most successful disabilities support program in Oregon. We’ve gotten so much support in the Capitol. It’s kind of blindsided everybody that the Ways and Means Committee chose not to put this into a subcommittee.”

On Thursday, as the House session came to an end, Ross and others greeted lawmakers exiting the House Floor and asked for their support.

“We are also going to walk through the House side and the Senate side,” said Ross. “We are going to speak to our representatives and senators and we are going to ask them to see our children, actually look at our children and hear our stories. Most of these children that you see here would not survive in an institutional setting. They need to be at home where they are being cared for by those most knowledgeable of their care. They just want their parents as their caregivers. My son does.”

Several lawmakers voiced their support.

“We are begging legislators to listen,” said Ross. “This is way more than just politics to us. This is our children’s lives. We need something put in this session so we can resume this program before children fall off the cliff. We don’t have much time to continue on without support and right now that Oregon doesn’t want disabled children in the state. I’d like to see that change.”

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