SALEM, Ore. — Parent advocates in Oregon continue their fight to renew a program that allowed them to be paid as their child's caregiver during the COVID-19 public health emergency.
The program, which paid family members to care for loved ones with disabilities, was a temporary measure enacted during the pandemic. It vanished when the pandemic emergency ended on May 11, 2023 and federal funding dried up.
Since last year, families have explored numerous pathways to keep the program going, from pushing for a bill that would restart the program in some form in 2024, to speaking directly to federal officials about how the state can opt in to funding.
KGW met with several families to talk about what the paid parent caregiver program allowed them to do for their minor children with disabilities.
"You never look at COVID like it's a blessing, but it was a blessing for parents like us," said Lynn Godfrey. "It really, really does make a difference. I mean, quality of life, quality of life for our children. They're happier, they're less sick."
Godfrey's daughter, Miley, has Angelman syndrome, a complex genetic disorder that impacts the nervous system.
Maria and Aaron Jolley also took part in the program for their 6-year-old son, Lucas, who has a seizure disorder.
"There's no cure, and it's going to get worse as he gets older," explained Aaron, "It started when he was about 3 months old, and since then he's been having so many seizures that he hasn't been able to live a normal life."
"Having a child like this — you can't work outside easily," said Maria. "And this type of job where you can be a caregiver for your disabled child gives stability to families like mine."
Andra Brown-Lopez cares for her 3-year-old son, Ezra, who was born with Cornelia de Lange syndrome.
"Being his mom is the best thing that's happened to me," she said. "There's just a lot that goes into taking care of him ... and you know, me and his dad are always worried when our luck is going to run out with him."
Since the program's end, anxiety and fear has gripped these families who are unsure what will happen next.
"We have a shortage, a massive shortage in the state for qualified care, and every one of these children require a lot of care," said Godfrey.
"It's not that I don't want to work, it's that I literally can't," said Brown-Lopez. "At the end of the day, he is the most important thing. A job can replace employees, and they do, often. I can't replace my son."
"Not only is there no caregiver to hire, but we're also going to have to take time away from work to be able to be here to care for our son's needs. It's just really challenging," said Aaron Jolley.
State Sen. Sara Gelser Blouin, whose committee introduced Senate Bill 91 to reinstate the paid family caregiver program, is working to get gap funding to allow families with the greatest need financial help between now and when a change goes into effect.
Despite the Republican walkout stalling many bills in Salem, including SB 91, parents hope their tireless advocacy will lead to changes in the short term for the stability of their families.
In a statement to KGW, Oregon's Office of Developmental Disability Services wrote, in part:
The Oregon Department of Human Services’ Office of Developmental Disabilities Services (ODDS) administered the temporary program that helped reduce the risk of COVID-19 infection for the most vulnerable children in Oregon’s intellectual and developmental disabilities (I/DD) system. The temporary program gave parents the option to reduce the number of outside caregivers coming into their homes. This reduced their children’s chance of exposure to the virus. ODDS has been clear since the beginning that this program was temporary.
ODDS could not extend the program permanently, because ODDS created the program through a temporary federal authority that expired with the PHE (1135 authority). Whether ODDS can administer a permanent paid parents program or any form of a bridge program until the permanent option is established is a legislative matter.
Last year, members of the Oregon Legislature held listening sessions with self-advocates, parents and other members of the I/DD community about whether to make the temporary program permanent in some form. This year, legislators put forth two bills with different options for a permanent paid-parents program. One bill, Senate Bill 91, is still in consideration and is currently in the Joint Committee on Ways and Means Subcommittee on Human Services for funding. If the Legislature passes a permanent solution, it will still take time, likely into 2024, for ODDS to get federal approvals and set up the new program.
ODDS understands how the scheduled end of this program has been unsettling and disruptive to some families who came to depend upon it. In Oregon, case management entities (CMEs) with whom ODDS partners coordinate the planning and selection of services and supports with individuals and family. ODDS has directed parents to their CMEs and other resources to help them navigate this transition.