Parents involved in a program that has allowed them to be paid as caregivers for their disabled children during the COVID-19 pandemic are now faced with a fast-approaching July 15 deadline for the end of the program. State Rep. Cedric Hayden, a Republican who represents parts of Douglas and Lane counties, says he’s trying to make the program permanent.
A federal Public Health Emergency (PHE) was declared Jan. 27, 2020, allowing Oregon to receive a temporary waiver which permits these parents to be paid as caregivers for the specialty care they provide to their own disabled children in the midst of the pandemic.
Paige Hall is a parent advocate who struggles to find caregivers for her medically fragile son. She says, “There is definitely a shortage of people who are able to work.” Her son’s special needs qualify for enough state-allotted hours to cover both a full-time and a part-time caregiver. Hall says finding the right fit for the job is difficult.
“We did have two caregivers kind of just up and quit one day. It’s hard to find qualified, consistent and reliable caregivers,” Hall says. “It was very stressful and heartbreaking for my son.”
While struggling to staff caregiving hours with reliable employees, Hall says she takes on much of the care her son needs herself. Getting paid for the work she already does is something she says has helped her family immensely. She says with access to these paid hours, she no longer has to worry about basic needs like paying for bills, food and transportation to regular doctors’ appointments.
“When this program started, of course I jumped on it right away because the labor is already there, it already exists,” Hall says. “He needs physical help; he needs medical help; he needs somebody there to create a consistent and reliable structure and routine. I’m already doing those things.”
Before COVID, parents were prevented from qualifying for being paid for caregiver hours by an Oregon law, with an exclusion that bars providers from offering services if “the individual is a child and the independent provider is the parent of the child.” The COVID-related qualification now allows parents to provide paid care for their disabled children if those children qualify for 240 or more caregiver service hours a month.
Pushing for a permanent rule change is a coalition raising awareness state-wide and providing testimony at legislative hearings. These efforts to support disabled children are being spearheaded by parent advocates who are hoping to extend the declaration until state legislators can amend Oregon law to allow parents continued access to paid caregiving hours.
One such parent advocate is Shasta Kearns Moore, a former journalist who created and writes for Medical Motherhood, a newsletter about raising disabled children. Her children qualify for over 88 hours of caregiving time a week through Oregon’s current K-plan, a Medicaid state plan providing “community-based services and supports” to allow caregiving to happen in clients’ homes, where they are comfortable.
For Kearns Moore, working those hours all by herself isn’t an option. Through Oregon’s temporary program, she says she feels empowered to find the best in-home caregivers by being able to afford to let go of unreliable or unqualified carers.
“I do not want more than two full-time jobs,” she says of the hours the state allots her children for in-home caregiving per week. “I have five caregivers still, even with this program.”
Kearns Moore says before K-plan was established in 2014, there were limited services and provisions for children with disabilities.
“When K-plan came along, there was a lot of hope and a lot of celebration that this might be something that could help,” Kearns Moore says. “And it did help, but it also kind of became sort of a mirage of services.”
She says even with the K-plan in place, families in the disabled community struggle to find and retain quality caregivers.
For the families given access to this temporary program, Kearns Moore says, being paid provides parents with the dignity of knowing their work is valued and deeply meaningful to the taxpayers supporting them.
“When you’re in this situation, there’s dozens and dozens of people that you interact with as a parent of a disabled child who are all getting paid with taxpayer money to help, but at the end of the day, the buck stops with you. And at the end of the day, you’re the only person who isn’t getting paid,” Kearns Moore says. “When parents get paid, they spend it on their kids, and that, to me, is the biggest thing: I want the money to get as close to the beneficiary as possible.”
This coalition of parent advocates has been working to compile portfolios, letters, testimonials and support from individuals and entities across the state to maintain access to these necessary funds.
“The best-case scenario is that any and all children who receive K-plan hours, regardless of the amount, would still be allowed to choose their parent as a paid caregiver,” Hall says. “The caregiving is already there, it has to be done regardless, and children should be able to choose who they trust most, who they want most.”
Hayden says his office is working with parent advocates to help make the program permanent for parent caregivers. He says he is helping these parent advocates by working with them to draft ideas to build a bipartisan group of lawmakers in support of their efforts.
“As a parent of a child with a disability, it’s personally meaningful to me what these parents are going through,” Hayden says. “To keep the program, we’re going to need statutory change to direct the agency to make this permanent.”
Hayden says this program has benefitted families involved by allowing parents and their children to stay together. He also says the temporary program “reduces a lot of anxiety for families.”
“I think there’s a path — but there will be some heavy lifting that has to happen on the part of the parents to educate other lawmakers as to the needs and the benefits,” Hayden says.
The PHE has yet to be extended until Oct. 15, and advocates aren’t halting their campaign. Meetings with the Office of Disability Services, as well as testimonials to the House Committee on Human Services Committee and the Senate Committee, took place June 2 and 3, respectively. Despite the uphill battle, Hall says she is looking forward to positive change.
“I’m excited that disabled voices are being heard, and that changes are going to be made for the disabled community by the disabled community,” Hall says. “You’re not going to make decisions for us without us.”