Senators discussed two bills that would pay Oregon parents to care for their children with intellectual and developmental disabilities during a Senate Committee on Human Services meeting on Monday.
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Senate Bill 91 would require the Department of Human Services to request a waiver from CMS to obtain federal funds to pay parents of minor children with disabilities to provide attendant care services for their children.
SB 646 would require the Oregon Health Authority (OHA) to request federal approval to allow a parent or legal guardian to be paid to act as a personal support worker or direct support professional for a minor child who has a disability.
The federal government partially paid for the parents of disabled kids to take care of their kids during the COVID-19 pandemic. Sen. Tim Knopp (R-Bend) said constituents have requested legislation that would provide an opportunity for these benefits to continue through a permanent program.
“We learned that the workforce for taking care of many of these kids, like all workforces, has declined pretty rapidly,” Knopp said. “The other thing we learned was there were better outcomes for the kids with (caregivers) that knew them the best; their parents.”
Gabriel Triplett testified in support of both bills. His 10-year-old son is disabled and qualifies for attendant care services.
“If Oregon does not pass legislation allowing parents to be the Medicaid-funded caregivers for their own children, the result will be diminished health outcomes and premature death for Oregon’s disabled children, increased costly institutionalization and foster care, and increased homelessness for Oregon’s most vulnerable families,” Triplett said.
Triplett said support for a permanent paid parent caregiver program is broad, and includes advice from the Office of Developmental Disabilities Services (ODDS).
“In February 2022, Oregon’s Medicaid Advisory Committee under the Oregon Health Authority submitted a letter to ODDS in support of a permanent policy allowing parents to serve as paid (caregivers) for their minor children,” Triplett said.
The Oregon Pediatric Society, Family Forward, Autism Society of Oregon, Oregon Family Support Network, and hundreds of community leaders have also voiced support for the initiative, Triplett said.
Caitlin Shockley, policy and training manager at ODDS, discussed the differences between the two bills and noted that ODDS is not taking a position on either bill. She said the primary difference is that SB 646 opens up eligibility to every child that’s eligible for developmental disability services in Oregon through the State Health Plan authority.
“And SB 91, on the other hand, limits the targeted population by using a waiver authority that can determine eligibility based on level of need,” Shockley said.
Either bill would require a long administrative process before it could be implemented, Shockley said.
“That begins with robust community engagement to craft and scope out what the amendment or application is,” Shockley said. “Followed by a required tribal consultation period that’s either 60 or 90 days, depending on the Medicaid authority, followed by a public comment period, which can happen simultaneously if that’s desired.”
Paige Hall, from Eugene, said her son has drug-resistant epilepsy, and is nonverbal autistic. She said she prefers SB 646 over SB 91, but would support SB 91 if that is the bill that moves forward in the legislative process.
“We support SB 646 as it most resembles the temporary program that is in place,” Hall said. “Senate Bill 91 is a very exclusive bill in qualifying only those with the highest needs.”
Sen. Cedric Hayden (R-Roseberg) voiced support for both bills, noting that there are hundreds of hard-to-discharge patients in hospitals waiting for transfers.
“Some of those patients may have been helped if they had a program like this,” Hayden said. “So I think we need to look holistically at the system and see where the cost savings are for programs like this. And really take it seriously, keep parents with their children, and allow them to live their lives as they best see fit.”
Senators did not make a decision on which bill to move forward with, and will consider them in future hearings.