Families like Calli Ross’ are dreading July 15. That’s when Oregon’s Office of Developmental Disability Services (ODDS) temporary waiver to allow parents to be paid caregivers expires. This temporary policy set in response to COVID, greatly helped many families like Calli Ross’. She’s the mother to 11-year-old Brecken, and 7-year-old Tens. Tens was born with 1 p36 deletion syndrome and a form of primordial dwarfism. He also has epilepsy and developed chronic lung disease; his lung disease progressed and he coded for 33 minutes and was placed on extracorporeal membrane oxygenation (ECMO) for three weeks. He now has an anoxic brain injury, so he is nonmobile, nonverbal, on a vent and oxygen, and feeding-tube dependent. He requires around-the-clock care.
“Prior to becoming a paid parent caregiver my husband worked two jobs and spent 90 hours outside our home every week,” she says. “We have never, not even before COVID, had our monthly allotted (caregiver) hours fully or even near fully staffed. I stayed with our son, often running on three or four days in a row without sleep. We incurred thousands in debt paying bills on credit cards and often chose between groceries and medications. With the paid parent caregiver policy we are now able to pay down debt, afford our home and basic amenities, and provide a few extras that insurance won’t cover.”
Ross has been working with other parents to advocate for the paid caregiver policy to be extended and made permanent — and to cover more families. They’ve met with lawmakers, but keep hitting roadblocks with the ODDS. If the policy is not at least temporarily extended, many families will be making decisions no families should ever have to face. “At this point, myself and 340 other families are facing two choices,” says Ross. “Leave our children in the ERs when we no longer have the resources to take care of them … or tax an already overtaxed medical foster system. This policy … is the vehicle to allow our children to live at home.”If you’d like to help support Ross and other families like hers, you can send emails to your state reps and senators, call Governor Kate Brown’s office, sign the petition at change.org, and join their Facebook group: Allow Oregon’s Disabled Kids to Keep Parent-Caregivers.