Special Education reform: Will Oregon's largest district budge?

Plus: N.C. investigation finds hundreds of disabled students learning from home; Arizona's paid parent proposal; and Minnesota's new law will save families thousands

Schools in Oregon’s largest district are taking No School November to a new level. The Portland Public Schools’ teacher strike that began Nov. 1 is expected to continue to at least Nov. 27, or beyond.

Hop on over to Axios Portland to read my friend Emily Harris’ piece on what the union is asking for special education students. You’ll notice a quote from a familiar source (hint: me) about what is missing from even the best IEP.

And in case you missed my piece for PDX Parent that includes an exclusive on what an $80,000 report said PPS needed to do to fix its special education system, you can find that here: https://pdxparent.com/special-education-funding-pdx/ or read the Nov. 5 issue about it:

---

Medical Motherhood’s news roundup

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

• From White Mountain Independent (Arizona): “Proposal would help families of children with disabilities by paying parents to be caregivers”

[…]In 2020, as a result of the COVID-19 pandemic, the Arizona Health Care Cost Containment System requested and was granted emergency flexibility to use funds to pay parents for providing specialized care to their children under 18. Though the flexibility was previously extended, it is currently set to expire in March 2024. A proposal submitted by AHCCCS to the Center for Medicare and Medicaid Services this September, however, would permanently extend the program, allowing parent caregivers who meet direct care worker requirements to be paid for up to 40 hours a week.

Brandi Coon is one of those parent caregivers and the co-founder of the Raising Voices Coalition, an Arizona organization that advocates for a permanent paid parent caregiver program. Coon started being paid as a caregiver under the emergency flexibility provision after going through training in 2020.

[…Non-familial caregiver Ronda] Barnes is supportive of Coon’s advocacy for paid parent caregivers. She said there isn’t a lot of specialized care of this kind available.

“I think it’s great. I think, you know, if you can’t go to work because … you can’t leave the child alone … I think they should get paid to help…just like I get paid.”

In 2020, according to KFF, an estimated 5.8 million people used paid long-term care services, including assistance with eating, hygiene, medication management and dressing. According to PHI (formerly the Paraprofessional Healthcare Institute), an organization that advocates for and conducts research on direct care workers, including those providing at-home care, 15% of home care workers live in households below the federal poverty line and 16% of home care workers work more than 40 hours per week.

“It’s a workforce with a lot of turnover. It’s a workforce that doesn’t pay particularly well and it’s a workforce that has a lot of demanding requirements and emotional requirements of the worker,” said Alex Demyan, assistant director for the Division of Community Advocacy and Intergovernmental Relations at AHCCCS.

“When there’s a gap between that assessed need and the immediate availability of providers, parents have to kind of pick up the slack there,” Demyan said. “Historically, they have not been reimbursed for that work, so … we kind of view this program as a step in the right direction to help address that workforce need.”

[…]Currently, paid parent caregivers in Arizona can bill an unlimited number of caregiving hours. The AHCCCS proposal, however, plans to phase down the allowed amount of billable hours, starting with a limitation of 80 hours a week from Feb. 1 to May 31, 2024, and going down to 40 hours a week by the end of 2024.[…]

• From WCNC (North Carolina): “Hundreds of students with disabilities stuck indefinitely 'learning' at home”

The pandemic may have introduced most families to the frustration, isolation, and learning loss associated with remote learning, but students with disabilities and their parents have suffered the effects of that kind of education for years. Many still remain in that setting today.

Public records analyzed by WCNC Charlotte identified hundreds of vulnerable students in North Carolina who are not allowed to attend school, because of behaviors linked to their disabilities. Advocates believe the number of kids assigned to homebound learning is likely much higher.

[…]Records show 643 children in North Carolina alone learned in a homebound (or hospital) setting in 2022, down from 804 in 2021, but attorney Ginny Fogg believes the real number is likely much higher.

"I think it's well over a thousand based on our cases, calls that we've received, and what we hear from parents," Fogg said. "Really, what you're aiming for is to not be in that homebound setting."

[…]"What we really see when we see these numbers is a failing of the systems, not of the individual youth," Legal Aid of North Carolina Right to Education Project Managing Attorney Jen Story said. "We have to work to keep students in schools."

[…]Joyce Mesick said her school district hasn't done enough over multiple school years to come up with a solution that addresses [her daughter] Hannah's needs.

"School has been a big, big struggle for Hannah," Mesick said. "From January 2022 until June 2022 she was probably sent home at least over 40 times."

Earlier in 2023, she filed a due process complaint accusing Union County Public Schools of, among other things, failing to provide Hannah with a free appropriate public education. The case has dragged on for months.

"This whole process is really, really, really daunting," Mesick told WCNC Charlotte. "I am not optimistic that we will get justice for Hannah through this due process hearing, unfortunately."

[…]Hannah is constitutionally guaranteed an education, but the 4th grader with a disability is currently without one.

“This has been a really, really, really, really tough, tough year for her and it breaks my heart as a mom, because I really, really, really want her to get an education,” Mesick said.

• From the Star Tribune (Minnesota): “A life-changing reform for families with disabled kids”

For the Kausel family of Apple Valley, the challenges of caring for Noah, 14, who has autism and language delays, have included paying between $10,000 and $20,000 a year in "parental fees" to access services provided by the state's medical assistance program.

Disability advocates have dubbed it a tax on families with special needs kids. Many other states don't collect these fees, but Minnesota has since 1990, when the state's budget was in the red. While the sum is determined by a sliding fee scale based on family incomes, too many families struggled to meet their obligations or, worse, don't access this care for their children.

[…]Thankfully, relief is on the way for families like the Kausels. During the 2023 legislative session, lawmakers eliminated fees for many, though not all, families with disabled children accessing services through the medical assistance program.

The change is expected to help about 10,000 families across the state. It's an under-the-radar reform that merits both praise and a spotlight. Tapping families with disabled children to help balance the state budget was misguided. Compounding that mistake was leaving the fees in place for more than three decades.

[…]Doing away with the fees equates to about $11 million a year in foregone revenue. Because the medical assistance program is jointly funded by the state and the federal governments, the bottom line cost to the state is $5.1 million annually.

[…]"Because of this significant cost, many parents were driven deep into debt — maxing out credit cards or taking a second mortgage on their homes. Others had to forgo services for their disabled children altogether, because they simply could not afford the fees," the Arc statement said. "By eliminating these fees and ensuring access to critical disability supports, the Minnesota Legislature demonstrated bipartisan commitment to creating a state where all children can thrive."[…]

---

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.