SALEM, Ore. — A group of Oregon parents are fighting to keep a pandemic program in place permanently, calling it a lifeline for their children and their families.
During the federal public health emergency (PHE) that began at the start of the COVID-19 pandemic, parents of children with serious disabilities and medical needs could be their child's caregiver. With the PHE set to expire in May, parents who have benefited from this temporary exception are fighting to create a permanent program within the state.
When the pandemic hit, many things changed for people including the family of Gabriel Triplett.
"I am a dad of a 10-year-old, awesome, disabled boy," he said. "[During the pandemic] it just became extremely unsafe for anyone to allow outsiders in their home, let alone for the most medically fragile kids, so we didn't."
His son, Oscar, qualifies for disability services through Medicaid, including in-home hours staffed by a support worker. Under the PHE, his parents could fill that role.
"The red tape was allowed to fall away and his mom was allowed to be paid to be his caregiver," Triplett said, "And since that happened, my son has not been admitted to the hospital... and being admitted to the hospital was a common thing for us before this program."
Dozens of parents shared similar stories and hope to fund a permanent paid parent caregiver program, citing better, more personalized care on top of a severe lack of support workers; a shortage made worse during the pandemic. This week, many brought those experiences to a committee hearing in Salem.
Parent advocates called for the passage of SB 646, sponsored by Sen. Tim Knopp. It's a broad measure, which would add to the state Medicaid plan, and allow more families of children with disabilities to be eligible. The second bill, SB 91, which was introduced by the Senate Committee on Human Services, applies to fewer families and is more restrictive than the first bill.
"It is a narrower program than what the advocates would like to see," said Sen. Sara Gelser Blouin, Chair of the Human Services Committee. "[Senate Bill 91] would ask the state to apply for an additional waiver, and it would allow children who have the highest needs — and that would be determined by a service level of very high due to medical needs, or very high due to behavioral needs — that would be able to pay their parents."
Blouin explained the first proposal has far too big a price tag, and even the second bill would need tailoring before it could become law.
"I have had conversations with budget writers and leadership who have informed me that even Senate Bill 91 is probably too big, and we need to make it smaller than that," she said in the committee meeting on Monday.
Parents argue funding an inclusive program won't be as costly as lawmakers predict, and wouldn't displace non-parent support workers. Advocates are pushing to have something in place as soon as possible, as the PHE comes to an end in just a couple of months.
"It's not us versus them, one or the other," said parent Shasta Kearns Moore. "We need a fully functional system of care, and a paid parent program is one piece of that puzzle.