My view: Disabled children, families hurt by unfair Oregon rule
Jessica Franklin didn't want to leave Oregon. Her family and friends were here. Her life was here.
"We want to be home," Jessica said. "Oregon is home and it has been home since I was 5 years old."
But as a single mom to 12-year-old Chase, who needs round-the-clock medical care, and his neurotypical older sister, she couldn't provide more than poverty for her children in Oregon's system. So, Jessica was forced to abandon her natural support system to move to California, where parents like her are allowed to be their disabled child's paid in-home support worker.
The prevailing argument in Oregon is that Jessica shouldn't be paid because her caregiving labor — the same labor that our state would happily pay someone else nearly $20 per hour to perform — is her son's "natural support." Allowing her to be compensated for it — thus valuing her work and improving her children's financial safety net — would violate some sacred bond of motherhood, goes this line of thinking.
It's ridiculous. It was clear to everyone how ridiculous it was when COVID-19 made our nearly impossible caregiver system entirely impossible. While families were drowning in the 24/7 solo care of children who typically require teams of people, the state reluctantly agreed to ask the federal government for a waiver to allow parents of our highest-needs children the option of officially performing that job.
That was put into effect a year ago and the results have been stunning. You can read dozens of stories of the impact of that change in public testimony to the Medicaid Advisory Committee. Parents who hadn't been able to work since their child's birth, or onset of symptoms, were suddenly able to afford specialized toys, clothing, medical equipment, enrichment activities and freedom from financial worry. Their children were healthier and happier under the new stability, saving the state untold millions in hospital bills, foster care placements or group home fees.
Kårun and Shari Virtue know exactly how radically a family's life can change when the prohibition against parents serving as paid support workers no longer applies. Parents of six children, their two youngest had intellectual disabilities that made everyday life very challenging. Kårun is a disabled veteran and Shari could not work due their children's needs and the state's rule against using paid caregivers to go to work. They lived for years below the poverty line on Kårun's veteran's benefits.
"We were unable to do almost anything with them," Kårun wrote recently in a letter to the state. "We could not afford to take them to the movies, go shopping, or go to McDonalds."
But then, one day, the oldest of their two disabled children turned 18. Suddenly, the state was willing to pay Shari to be a personal support worker and, practically overnight, the family was able to provide hobbies, outings and therapies for their two disabled children that they never could afford before.
This is what hundreds of Oregon parents of young children newly experienced in the last year: A government program that actually worked to provide their family the direct, person-centered support and care that their children deserve.
So, of course, they are shutting it down. When the federal public health emergency ends on April 16, so does this special rule. These families will go back to the untenable situation they lived in before the rest of the world learned what it was like to live like us — unable to work, unable to access a proper education for their children, unable to go on simple errands, and constantly terrified of a medical disaster.
The state of Oregon performs a meticulous analysis of the extra work each child on this program requires — then says it will only compensate strangers to perform these highly skilled functions, never parents. No, never the people who are biologically and psychologically most likely to be invested in their children's success, not the people with the most training and experience. Those people — the best-qualified candidates, really — are banned from these jobs.
I don't get it.
If we want a debate about whether providing caregiving to disabled children is a public need, let's have it. If we want to argue that actually filling the caregiver hours that — not one but two — annual state assessments say our children require is too expensive, let's do it.
But if the real problem is that we expect parents — let's be frank: mostly young women — to give up their lives, their health, their sanity and their financial stability for the medical conditions their children happen to have, say it.
If we want them and their disabled children to live in stress and poverty, banned from income, savings or retirement plans, say it.
If we want to perpetuate the trauma, the ableism and the sexism of our current support system, say it.
Shasta Kearns Moore writes Medical Motherhood, a newsletter dedicated to analyzing policies around disabled children. She spends most of her time raising her twins with disabilities and, though her family benefits from the temporary program, she herself is still barred from being a paid caregiver under the current rules.
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