Oregon paid parent caregiver bill draws 'most compelling' testimony as advocates await its fate
PLUS: The number of U.S. foster youth with I/DD is growing; Arizona mom designs inclusive play space; and Virginia could expand DD services but wait lists remain
Emotional testimony kicked off Monday’s meeting of the Oregon Senate Health Care committee as advocates lined up to voice their support of S.B. 1565, a bill that would expand the option of Oregon’s paid parent caregiver program from 155 children to all approximately 1,400 who qualify as “very high” needs.
In a clear voice, 7th grader Brecken Ross told the committee how, on his 13th birthday this year, his parents had saved his brother’s life, manually ventilating him for nearly 20 minutes before EMTs arrived, after a seizure dropped his oxygen saturation to the 30s and spiked his heart rate into the 200s.
“No amount of training can fully prepare you for a real scenario,” Ross said. “Only parents truly know their child and all of their ins and outs — and yet you can still hire anyone over 18 off the streets and the state will pay them. But their parents — who have known them their whole life and sacrificed so much for them — won’t be paid.”
Ross sat next to Tobi Rates, the executive director of the Autism Society of Oregon, whose youngest child died of a seizure-related heart attack a year ago.
Rates noted that although parents of adult children in the state can be paid, many in this population don’t even make it that far. “My child died at 18 years and 5 months,” Rates said tearfully. “This is not unusual for our children, unfortunately.”
The meeting video has been posted online. My own testimony starts at minute 11:30. I joke that my son’s headphones — which chose the exact moment to fall when I was explaining how children have to do without their support when parents can’t be their caregivers —were a paid actor.
The advocacy group that I’m a part of — Advocates for Disability Supports — has worked with State Senator Cedric Hayden (R-Fall Creek) to craft this bill.
Sen. Hayden, who also noted that he had a child with significant needs, explained that the state is basing their predictions that this program would cost more money on their budgeting process based on past utilization rates. He said that a system in a workforce crisis will always be underfunded using that methodology.
“You can’t use utilization hours and get to those assessed hours if you don’t have the people to utilize the hours,” he said. “There’s an aspect that it would cost more —we’re not saying it wouldn’t cost more — but the state has signed up through their waiver to this obligation and they’re, in my opinion, not meeting their obligation.”
The committee chair, Sen. Deb Patterson (D-Salem), likened this to an airline overselling seats, assuming some wouldn’t show.
“I apologize for texting in the middle of this, but I, too, have a special needs daughter and I want to make sure she’s with her caregiver,” Sen. Patterson noted at one point during the meeting.
On Wednesday’s work session on the bill, Sen. Daniel Bonham (R-The Dalles) said he hoped the Joint Committee on Ways and Means, which will decide funding, will agree that the bill ought to be considered budget-neutral as the hours had already been promised. He added that Monday’s hearing contained “some of the most compelling testimony I’ve heard in this building in the six years I’ve been here.”
Sen. Chris Gorcek (D-Gresham) agreed. “I do hope Ways and Means hears this loud and clear,” he added.
The five members of the bipartisan committee voted unanimously on a do-pass recommendation. As of this writing, the bill is waiting for a new fiscal impact assessment and to be scheduled to be heard in Ways and Means. The bill would then have to pass both chambers of Oregon’s legislature before sine die on March 10.
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• From AZCentral: “A mom’s personal quest for her kids led to Jordan’s Corner in Scottsdale”
A splash pad. Big jungle gym centers. Cafes designed for young families. These were among the places Janell Panicko took her two young children to so they could have constructive play that builds skills while being around other kids.
The world was just coming out of COVID-19 shutdowns and Panicko was figuring out where to take her children, both under the age of 2, including her daughter, who was undergoing speech and occupational therapies.
“I took her to places but I felt like there was nothing that was geared to her needs,” Panikco said of her daughter.
She knew she wasn’t alone so Panicko decided to change that, not only for her kids but for others too.
The result: Jordan’s Corner, the indoor play space designed to encourage multiple types of open-ended, inclusive play for children 6 years old and younger that she opened in Scottsdale in 2022.
[…]In that first year, the business got 7,800 clients for these play sessions and memberships, which shot up to 12,885 last year, Panicko said.
Jordan’s Corner is part of a U.S. indoor play centers industry that generates $979.3 million in revenue, according to online industry research database IBISWorld.
[…Panicko’s] own children’s unique needs guided her to create an inclusive child-led learning space. It’s also designed to accommodate wheelchairs, from the hallways to the kitchen area.
[…]About half of the kids who go to Jordan’s Corner are typical, with the other half having special needs, Panicko said. Some parents of disabled children tell her that Jordan’s Corner, because of its set-up and activities, is the only play facility they can take them to.
[…]“Many families come here with no community and leave with getting invites to birthday parties and playdates outside of here,” Panicko said. “Being a community builder and being able to design a place where someone can find friends and grow relationships, that is the biggest thing.”
• From Cardinal News (Virginia): “Youngkin’s plan would fund care for thousands of people with developmental disabilities. Even more would still be waiting.”
It’s been decades since Sue Utterback and her husband have had a break from caregiving.
[…]When young couples are considering moving to Virginia to start a family, Utterback has one piece of advice for them: Pick another state.
She’s asked doctors and geneticists for years what caused her son to be born with his disability, and she’s never gotten an answer.
“I don’t smoke, I don’t drink, nothing happened during my pregnancy,” Utterback said. “I’ve had genetic testing twice and nothing has come up.”
In the U.S. about 1 in 6 children are born with a disability, according to the Centers for Disease Control and Prevention. For some developmental disabilities, the risk factors and causes are known, but for many others there’s no identifiable cause. Everyone has a 1% to 3% chance of having a developmentally disabled child, according to the CDC.
Medicaid waiver programs allow states to provide services to people with particular long-term health care needs. Funded with both state and federal dollars, waivers are meant to help people live in their communities and out of institutionalized care settings such as training centers or nursing homes.
[…]The demand for direct care workers in Virginia is expected to grow by 23%, or 153,000 openings, by 2028, according to workforce data from PHI, a nonprofit organization that works to improve long-term services and supports for the elderly and disabled. In 2022, there were 95,500 direct care workers in the commonwealth.
[…]Budget amendments have been introduced this session to bolster provider capacity, including a $5.2 million one-time allocation to the Arc of Virginia for workforce development and business expansion. Of the appropriation, $2 million would be used to fund a recruitment campaign, $2.9 million for business startups and expansion incubators, and $330,000 to educate people on the underused inclusive services provided to individuals with disabilities.
“We’re at that tipping point, it’s been a long tipping point, but the community is getting to a point where we’re looking at this differently,” Morgan said. “I understand the workforce crisis is a real issue and concern, but it’s almost like the chicken or the egg. We have an opportunity now to get those slots and then we can worry about how to build capacity.”
• From Drexel University via Newswise: “Number of at-risk youth with intellectual disability and autism in the U.S. foster care system is growing”
[…]In 2016, there were over 430,000 youth in the U.S. foster care system. The researchers found that the population of youth with intellectual and developmental disabilities in foster care had grown substantially to almost 40,000 – or nearly 9% – and the rates of autism and intellectual disability among youth in foster care were two to five times greater than the rates found in the general U.S. population. Among youth with intellectual and developmental disabilities, Black youth and female youth had a higher risk for foster care involvement compared to youth who were white or male. Risk for foster care involvement among youth with intellectual and developmental disabilities also increased with age.
“Understanding the involvement of youth with intellectual and developmental disabilities in the foster care system is an important first step in identifying priorities for needed policy and program change,” said Lindsay Shea, DrPH, associate professor and director of the Policy and Analytics Center at the Autism Institute, and lead author on this study. “Our collaborative team of public health, policy and social work experts sought to understand this group in the Medicaid system.”
[…]Medicaid is the predominant insurer for youth with intellectual and developmental disabilities and youth in the foster care system. However, there may be barriers to how states connect services for youth with intellectual and developmental disabilities to the foster care system.
“This research centers around the experiences of an extremely vulnerable, and often invisible foster care youth. The first step to supporting these youth, is ensuring that their experiences are visible,” said Amy Blank Wilson, PhD, associate professor at the University of North Carolina at Chapel Hill and co-author of the study. […]
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Expertly reported. The 7th grader was very brave and his testimony compelling. I hope Ways and Means will get this bill through!