Calli Ross watched lawmakers on Friday from the Senate gallery as her red-headed 8-year-old son Tensy sat beside her in his wheelchair.
A breathing tube connected to a machine keeps Tensy alive. A separate tube provides nourishment. He suffers seizures and needs around-the-clock care due to a combination of other health issues.
Tensy has primordial dwarfism, a growth disorder, and weighed 3 pounds at birth. He also faces end-stage heart and lung disease. A cardiac arrest that blocked the flow of oxygen to his brain for 33 minutes left him unable to walk.
After senators unanimously passed Senate Bill 91, Calli Ross said her son can spend more time with both his parents. That’s because the bill would pay parents to care for their children with high intellectual and developmental disabilities.
Ross’ husband, Dane, works about 90 hours a week as a chef at two restaurants so the Sherwood family can make ends meet while she cares for their son. With the measure’s passage, the family expects he can cut back on his hours.
“Senate Bill 91 is life-changing for us,” Ross told the Capital Chronicle after the vote. “We’ve just been going, going, going, but my husband will be able to take some time off or he’ll be able to do one job. And then I will be able to get some sleep at last.”
The bill now heads to the House, which must vote before a Sunday deadline to adjourn for the year. To reach this point, advocates and lawmakers worked for more than two years.
The bill extends a program that started during the pandemic and ended in May. During the pandemic, Medicaid paid parents to care for their children with high developmental and intellectual disabilities, but that benefit ended on May 11. About 700 children classified as having the highest of needs were eligible for the program.
The bill would put about $3 million toward the program, and the state will need approval from the federal Centers for Medicare & Medicaid Services. Federal matching funds would add an estimated $7 million.
The state and federal money would be enough to cover about 200 families, according to a legislative analysis. But that figure could change based on how much each qualifying family uses the program.
Parents would be paid similar rates to professional caregivers, usually around $20 to $22 an hour.
Lawmakers and parents described the bill as a starting point – and acknowledged needs are higher than what the money covers.
“We may need to come back and allocate more money in the future to serve more individuals,” said Sen. Sara Gelser Blouin, D-Corvallis. “We just need to figure out how this works so we are meeting the need.”
Gelser Blouin, who crafted the proposal and introduced it on the Senate floor, thanked advocates and families for working with her on the bill.
Minority Leader Tim Knopp, R-Bend, praised the bill and said he wishes the state could put more money toward the need. Knopp had brought forward a bill that would have opened up the program to about 10,000 children with disabilities without limiting it to those with the highest needs. That bill died amid concerns about its cost.
“I can only imagine the stress that would be involved, especially if you don’t have the resources, to wonder where that next meal, that next rent check, that next house payment’s coming from,” Knopp said.
Ross’ family participated in the pandemic program. They squirreled some money away, but the family’s budget will be tight until the state gets program running again.
The Oregon Department of Human Services would oversee the program, which still needs specific rules for who qualifies and how to sign up.
With the pandemic over, it’s challenging if not impossible for families to find caregivers to hire for their children. As a result, the situation is worse now for parents than they were during the pandemic, when they had access to federal benefits, said Shasta Kearns Moore, a member of Advocates for Disability Supports. The organization advocates for parents and disabled children in Oregon.
“This is the support our children need to survive and thrive in their communities,” Kearns Moore said.
As for Ross, she wants Oregonians to remember that children with disabilities are a wide community – and not as easy to spot as her son.
“It’s easy for people to look at Tensy and say, ‘This is a high-needs child. He’s going to need support,’” Ross said. “But there’s many invisible disabilities. It’s so much harder for those families who are equally in need to get the same support.”
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