Special Report: ‘Really stressful’: C.O. parents of children with special needs say new state aid program falls far short

(Update: adding video, comments from parents, DHS, state Sen. Gelser, Rep. Levy)

BEND, Ore (KTVZ) -- Parents of children with special medical needs are burdened with financial stress as a lack of caregivers require they be 24/7 care providers, limiting their ability to hold a job. A new state program is trying to help, but as Central Oregon parents note and officials acknowledge, its small budget limits the impact.

Many parents on behalf of their children may be eligible to be part of Oregon's new Children's Extraordinary Needs Program, and could be paid by the state to care for their children. The program that started July 1 resulted from Senate Bill 91, passed in July of 2023.

Though eligible parents could receive financial aid to take care of their children with extraordinary needs, some say once they are part of the program, they are limited in how much money they can receive, due to the limited number of hours they are allowed to report.

Between the lack of caregivers forcing parents to be sole caregivers, the inability to have a job outside of caregiving and the limited hours they can report, parents are faced with continued financial stress as they try to stay afloat and pay other bills.

Due to the lack of caregivers, a problem, nationwide, many parents must be full-time caregivers for their children, especially those whose kids have around-the-clock needs.

"I have personally had jobs in the past," said Courtney Coleman, a Central Oregon parent with a child with extraordinary needs. "Even your most compassionate employer cannot not have you be gone for three weeks at a time in a hospital or home with a sick child."

Another parent in a similar situation, Becki Moore, said, "The lack of highly trained caregivers means that I can't return to work, which means I can't help support my family at this point.

"We're living paycheck to paycheck on what my husband provides, and that's really, really stressful."

These are parents with children who suffer from Rett Syndrome and need 24-hour care. Both children, Franky and Lily, are eligible for the Children's Extraordinary Needs Program.

"We are not families trying to make money off of our children," Coleman said. "We are families who want to make an honest wage for honest work and raise the awareness that it's not because of lack of trying to find caregivers - they're just not available and out there."

Though 1,500 kids are eligible for the new program, it can only support 155 kids, leaving the rest on a wait-list until an opening occurs. Franky is in position 1,275, while Lily is No. 275.

State Sen. Sara Gelser, D-Corvallis, acknowledged, "Even though 155 slots is inadequate, that's 155 more slots than we had last year, so it's gotten better, not worse."

Gelser helped legislate Senate Bill 91, which directed $3 million to the program. Similar to many other families, her now-adult child has special needs. She says the number of slots is based on what the budget can support, adding that the state currently funds six programs within ODHS and additional services within each of those programs. 

"We should just do all the things, but we have to balance the budget at the end," the senator said. "And when we're doing that, we have really difficult decisions to make that are truly life and death for some families, including these. And that on an individual level is frustrating and scary and hard."

State Rep. Emerson Levy, D-Ore., fully supports the program, echoing Gelser's point that the state's budget only allows them to fund so much. Once part of the program, parents are limited to reporting only 20 hours a week of caregiving, while caregivers could claim more -- something Moore hopes the program can change. 

Moore said, "It's almost discriminatory in the way that the program offers parents only up to 20 hours a week, when in fact any stranger who applies to be my daughter's DSP (disability service provider) or PSW (personal support worker) can earn 50 plus hours a week," said Moore.

Gelser says the Legislature has to maintain a balance of funds between programs, limiting the hours parents can report.

"(You) could have more hours available, but then you would serve fewer families, just because of the cost," she said. "And ultimately the challenge is that we have a lot of programs in Oregon that are really important, and lots of them have people waiting."

Oregon DHS says they’re monitoring the program closely and collecting data that will inform the Legislature on future budget decisions for the program. Gelser encourages parents to continue sending emails to their lawmakers, asking them to allocate more funds to the program.