Oregon legislature passes paid parent caregiver bill

Unanimous Senate vote on Friday. In the House on Saturday, 48 yays and one nay.

My son and I waiting in the House gallery for the vote. I was concerned he was losing patience after five hours of delays. Photo credit: Calli Ross

In the final step before the Governor signs it into law, a bill to create a permanent paid parent caregiver program passed the House on Saturday. I was not planning to be there, but that morning, my son said he wanted to go, so we did.

This means that for the first time ever, Oregon is poised to enshrine into law the value of the labor that parents do for their young disabled children. That labor allows our kids to survive and thrive in their homes and communities — and gives families the financial stability and freedom to determine their own lives.

It’s not all sunshine and roses. This bill is long overdue — Colorado has had a similar successful program for about two decades. The path to this legislation was much more difficult than it should have been — many power-brokers should have sat down and listened to us long before they did. The program will be much too small to address the need — of the more than 1,200 children who could benefit, only about 200 (or fewer) were funded. And, we still have a long path to implementation — probably not until mid-2024.

However.

Just two weeks ago we thought this bill was dead. To see it pass in the House today with 48 yes votes and only one nay — after a unanimous Senate vote yesterday — was so incredible.

One day, I hope to tell the full story of this long journey: The passion, brilliance, betrayal, humor and — most of all — the profound love for these little humans that I have witnessed from so many smart and committed parents with absolutely nothing left to give, but who gave themselves to the cause anyway.

But I am not telling that story tonight. Tonight, I am exhausted.

Truly, I have been a reluctant participant in what is rapidly becoming a national movement. I tried to quit several times. I have been “shot” several times for being the messenger of bad news. I would have much rather stayed safe and neutral in my role as a reporter and observer, but an invisible hand kept bringing me back to this important work.

The road is still long ahead. The work is not done. But whenever I would talk to my son about this ridiculously difficult process, he would joke in caveman-speak: “Government no move. Government stay. Government no move!”

Today we can say unequivocally and overwhelmingly: GOVERNMENT MOVED.

*For fans of the podcast version of Medical Motherhood: I’m sorry, I need to skip this week.

Correction: An earlier version of this post misrepresented the vote count.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The New York Times: “A Brooklyn School Pioneers New Ways to Teach Children With Disabilities”

[…]In New York City, the nation’s largest school district, nearly 200,000 students have disabilities, which can include everything from dyslexia to blindness. Families often struggle to navigate a labyrinthine special education system, and many pupils fail to receive all the services they require.

Children with intellectual disabilities, who represent about 3 percent of children and often have a genetic or chromosomal condition like Down syndrome, may leave the public system altogether to attend specialized private schools. Others enroll in a separate citywide district for students with more complex needs.

But at P.S. 15 — where 40 percent of students are in special education — the pilot, which will finish its expansion through fifth grade next fall, could push the boundaries of how schools integrate children in special education, experts said. P.S. 15 teachers are helping a small Texas district, for example, as it prepares to launch a similar program next year.

The Brooklyn pilot began in 2017 and is distinct from other city offeringsfor students with disabilities, although it is modeled on a similar program for students with autism. Two teachers lead a class, which includes a small group of general education students and about four children who follow special education plans for those with intellectual disabilities. A team of paraprofessionals and about a dozen in-house therapists work alongside them.

[…]It is a major change for Keller Chung, 10, a third-grader who has Down syndrome and was born with a heart defect. At the public school he attended in kindergarten, he was often sent to the principal’s office, given lollipops and distracted with an iPad, his father, David Chung, said.

“He was not really seen as a human with any level of achievement, or need to be challenged,” Mr. Chung said. “He was treated like a baby and babysat.”

At P.S. 15, where Keller, who is nonverbal, started in first grade, his speech therapist and other adults push him often, Mr. Chung says, even when he might shy away from answering challenging prompts about lessons. […]

• From NPR: “Why the number of kids enrolled in a federal benefit program has dropped dramatically

[…] EMANUEL: SSI is a $60 billion program. It dates back to the 1970s and President Richard Nixon. Over its 50-year history, SSI has never reached all the kids who are eligible. Many just don't know about the program. Yet lately, experts have noticed a new trend.

KATHLEEN ROMIG: Over the last 10 years or so, enrollment has declined.

EMANUEL: Kathleen Romig is with the nonpartisan Center on Budget and Policy Priorities.

ROMIG: In fact, in the last few years, SSI enrollment has reached all-time lows per capita.

EMANUEL: For older adults in the program, enrollment has just begun to rebound. But that's not true for kids. Their enrollment is down more than 20%, and applications are down by about half over the course of a decade. The Social Security Administration runs SSI. It declined interview requests. But says in a statement there are a lot of factors behind the falling enrollment, like the COVID shutdown and decreasing birth rates. But Romig thinks one of the biggest issues is money.

ROMIG: Between 2010 and 2023, SSA's customer service budget fell 17% after inflation. Over that same period, their staffing fell 16%.

EMANUEL: Fewer employees is a problem because you have to work with a representative to apply on behalf of a kid. Last year, the agency staffing was at the lowest level in 25 years.

[…] EMANUEL: Senator Ron Wyden, a Democrat from Oregon, says a lot of SSI's bureaucratic problems do come down to money.

WYDEN: It's my job as chairman of the Senate Finance Committee to find additional resources, and I'm committed to doing it.

EMANUEL: Widen says another part of the problem is outdated and overly-restrictive requirements. He's drafted a bill to modernize the program.

WYDEN: It's time to bring SSI into the 21st century. It's not been updated in 40 years.

EMANUEL: But his bill's price tag, $500 billion over 10 years, making some experts skeptical about its prospects.[…]

• From NBC News: “Disease screening for newborns varies by state. For some, that means diagnoses come too late.”

Arthur Hutchinson was a happy, goofy 1-year-old until a few months ago, when he mysteriously stopped crawling and sitting up on his own.

Genetic screening revealed that he had Krabbe disease, a rare disorder that can lead to nerve damage.

The condition is usually fatal, but if infants get stem cell transplants before symptoms develop, they may still be able to walk and talk. By the time Arthur was diagnosed, the best his parents, Allissa and Michael Hutchinson, could hope for was to extend his life by several years via a transplant.

[…]The Department of Health and Human Services recommends that newborns get screened for 37 disorders, including cystic fibrosis and Pompe disease, as well as 26 other related disorders. Krabbe disease isn’t on the list.

According to HHS, states largely follow the recommended list, and some screen for additional disorders. Ten states, for instance, test for Krabbe.

Dr. Michael Warren, the associate administrator of HHS’ Maternal and Child Health Bureau, said newborn screenings identify around 12,000 babies a year with conditions that might be life-threatening or life-altering.

But according to the EveryLife Foundation for Rare Diseases, a nonprofit advocacy group, no state screens for all 37 primary disorders. Nevada, for instance, screens for 31. New York, which has one of the most comprehensive programs, tests for Krabbe disease and all federally recommended conditions except one, Hunter syndrome.

[…] But the disease is a prime example of the challenges in expanding the recommendations. The Advisory Committee on Heritable Disorders in Newborns and Children, which determines which conditions are suggested for screening, has opted twice not to add Krabbe.

The most recent vote, in February, was a tie, which meant Krabbe couldn’t be included. Some committee members expressed concerns about the risks of stem cell transplants — such as life-threatening infections — as well as the feasibility of intervening before the disease progresses too far. […]

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