Oregon mother on new state program waitlist worries daughter may be forced into group home

BEAVERTON, Ore. — A Beaverton mother said her 15-year-old daughter may be forced into a group home if she can’t get into a brand new state program for children with disabilities that allows parents to be paid as caregivers.

The program – called the Children’s Extraordinary Needs Program – launched July 1 and pays parents of certain children to be their child’s caregiver. Hundreds of families qualify, but only a fraction get paid due to the limited budget.

Jodie Gibbs said she adopted her 15-year-old daughter, Amara, from Ethiopia when she was only a few months old. She was diagnosed with severe intellectual disability and autism and requires 24/7 care; she is unable to go to school.

Jodie – a single mother – said getting Amara the care she needs has proven to be difficult.

“There is no one that has the qualifications right now to be able to manage Amara’s severe behaviors,” Jodie said. “As soon as Amara has a negative behavior those people just leave right away.”

Jodie said news of the new state program gave her hope. Amara is one of 1500 kids who qualify due to their high medical or behavioral needs. The state pays parents or guardians of minor children up to 20 hours a week for home care.

“With the 20 hours a week, that would be lifesaving, like a lifeboat to me, basically allowing me to stay in-home with Amara until she turns 18,” Jodie said.

The state received federal approval through a Medicaid waiver to do this. Before the pandemic, parents of minor children could not get paid for providing care, but the federal government relaxed the rules during the pandemic to cut down on care providers in and out of homes.

However, the budget only covers 155 of the roughly 1,500 families at one time. Jodie is one of more than 1,300 parents who got a letter telling them they did not get selected and instead would be on a waitlist.

Amara is currently number 749 on the list. Jodie said if nothing changes, she might be forced to put her daughter in a group home so Jodie can go back to work.

“We have been through just so much together,” Jodie said. “My daughter is absolutely everything to me, and I would give anything, and I would stop at nothing for her which is why I want to speak out for this. I’m doing this out of desperation. I don’t want to have that happen.”

The fix, for her, would be an expansion of the program to pay every person who qualifies, but the state said the money simply isn’t there to do that. One lawmaker told KATU the state will likely review the program’s costs in early 2025 and expand if the budget allows.

Jodie worries she is running out of time; she encouraged others like her to sign an online petition urging the federal government to relax the rules permanently. It has more than 40,000 signatures.

KATU has spoken to a state lawmaker who worked on this program and the state’s Department of Human Services. We are sitting down with that lawmaker and people with the state agency in the coming weeks to learn more about the program and the likelihood it can expand.

In the meantime, if you or someone you know is faced with a similar situation, reach out to us. You can send us an email at [email protected] or leave a voicemail at 503-231-4205. You can also reach out to us on social media.