We’re carrying the torch Julie Beckett lit

Julie Beckett and I hold a sacred bond. Although our husbands both hailed from Marion (albeit a generation apart), and she lived out her days in the community close to my in-laws, I never met her. I live in my native Portland, Ore., and to be honest, I hadn’t heard of Julie until the morning after she died this week. I am, however, intimately aware of “The Katie Beckett Medicaid Waiver,” that she championed in the 1980s when her daughter was forced to live in a hospital for three years after becoming disabled as an infant. The ventilator and nursing she required was not allowed under federal rules for use at home, so Julie fought to change Medicaid. She knew children were better off to be cared for at home, around their loving family where they belong, in their own community. Arguing that this provision would not only preserve her daughter’s quality of life, but it would save taxpayers thousands of dollars each year, the story caught the attention of newly elected President Ronald Reagan who was looking for ways to deregulate and reduce the cost of Medicaid. He signed into law the waiver Julie had fought for, with her daughter’s name at top-billing.

My 6-year-old daughter Winnie Jo was born without complication, but shortly after we were told that she had a rare form of deafness called auditory neuropathy. It was the day of that first diagnosis (our D-Day) that I was initiated into a club I never sought to join. Being the parent of a child with disabilities can best be described as a master class in fortitude. You must grieve a life you expected for your child, while at the same time learn to be grateful for their existence exactly the way they are, because disability is diversity; and diversity is beautiful. Over time, Winnie’s diagnoses grew, and today we rattle them off with an almost clinical ease: cerebral palsy, deaf/blindness, epilepsy, Global Developmental Delay, non-ambulatory, non-verbal, yada, yada, yada.

Those first few years were the toughest. I often define two turning points for me in this journey.

First was when Winnie was given the cerebral palsy diagnosis at age 2, which helped me connect with a group of parents going through similar struggles, and I suddenly had community.

Second was when Winnie’s diagnoses qualified her for Oregon’s Medicaid Waiver (an iteration of the Katie Beckett Waiver with no waitlist, a true godsend). I often say that is when the financial nightmare of having a medically fragile child (who hit her out of pocket max yearly) finally let up a little.

Medicaid covered our coinsurance and deductibles, granted us previously denied medical equipment, and quantified the amount of care she needed “above and beyond a neurotypical peer,” and allocated us “help” by way of paid in-home caregiver support.

After an initial period of jubilation, I quickly noticed that the caregiver hours were both a blessing and a curse. Even before the pandemic, the caregiver shortage was acute. Now it’s at crisis levels, with baby boomers increasingly becoming in need of home care, as well as many more kids with disabilities being born each year with amazing medical advancements in preterm birth survival. Something has to give! The hours are unfilled, but the need is there, and being executed by family, often unpaid and at the expense of their own outside employment. Don’t get me wrong, we are happy to be performing this work with our child, as we know them best and have their best interest in mind. The money earmarked for these children’s care ought to directly benefit them, and not be tied up in bureaucracy. That’s why I’ve been advocating in Oregon to change our Medicaid waiver to allow parents the option to be our minor disabled child’s paid caregiver, which in my home state is forbidden until they are 18. The idea is gaining nationwide momentum, because it has been allowed temporarily during the pandemic, and its results have been stunning.

A third of the families in Oregon using this option this past year were surveyed and 13 percent say they were saved from the brink of homelessness, half reported reduced reliance on public assistance and a whopping 90 percent said their children were healthier as a result of being cared for by their most qualified support; their parent. This in turn saves the taxpayer money, like Julie argued to President Reagan, because our children’s institutionalization is not only unacceptable, it’s expensive.

This past Sunday, someone on our team was discussing Julie, and we hatched a plan to reach out to her for guidance and strategy, as she sounded like the pioneer we needed. We were shocked to hear that we were one day too late. When I researched her, and realized she lived in Cedar Rapids where I’ve spent so much time visiting my husband’s family and friends over the years, I felt compelled to honor her. I know if I would have been able to meet her, we would have been fast friends. Being the mother of a child with significant disabilities can be isolating, until you find your people.

I hope now that she is done fighting, she is at peace with her dear Katie. We are carrying the torch that Julie lit, and fighting for our children’s rights, dignity, and place in this world.

Jenny Eckart Hoyt lives in Portland, Ore.