Whew, it has been a long dry spell since you’ve been able to see my freelance work, dear readers. That doesn’t mean I haven’t been working on stories for months, but somehow everything is coming out in August!
PDX Parent has published the first part of a two-part series on the State of Special Education in Portland. Right now you can read the whole piece on pages 14-17 of the digital version of their print edition. A link to the web story is coming soon.
EDIT (8/19/23): Here it is! https://pdxparent.com/unmet-needs-the-state-of-special-education-in-portland/
Here’s an excerpt:
At first, Neil Haigh was not that alarmed. This was early January and the Southwest Portland dad had gotten a call from school that his daughter Mattea’s feeding tube had come out, so could he please come fix it?
Mattea, a 10-year-old with blue eyes and golden hair, is nonspeaking and needs a range of medical supports, such as her gastronomy tube or “g-tube” that attaches like an earring in the wall of her stomach to provide her nutrition.
Haigh replaced the g-tube, and suggested that the Markham Elementary School staff receive additional training. But a staffer tipped him off that it wasn’t necessarily an adult who was responsible for the g-tube situation and when he got Mattea home, he noticed bruising on her arms.
“It felt like a bit of a cover-up and that’s when I got more involved,” Haigh says.
After weeks and hiring a legal team, the family finally got a copy of the incident report.
“[A student, name redacted] pulled out another student's ‘mickey button’ which is part of their feeding apparatus,” reads the report. “The button was under the student's clothing. Removing this button in this way takes significant force and it is painful to have it ripped out of the stomach.”
Mattea’s parents were shocked. Haigh started organizing with other classroom parents and discovered that the incident was just the “tip of the iceberg.” Kids were getting hurt, other parents alleged. Even worse, the classroom was struggling with a two-year-long string of teachers and support staff who had quit or left without returning, often citing a lack of support and safety.
“What happened to Mattea was awful, but it was a result of years and years of malpractice,” Haigh says. “We have no beef with (the child who removed Mattea’s g-tube). That kiddo is just a kiddo who has a lot of needs and wasn’t being adequately supported.”
There are 6,916 different experiences of special education in Oregon’s largest school district because, at last count, there are 6,916 special education students in Portland Public Schools (PPS). Guided by Individual Education Programs or IEPs — a team-designed plan for each disabled student’s particular needs — special education can be as simple as providing extra time to finish a test or as challenging as providing a one-to-one adult who can constantly, consistently, and instantly set expectations, react to changing conditions and buffer explosive behavior.
By some metrics, PPS’ special education department is doing well. The vast majority of special education students are integrated into the general education environment at least 40% of the time, with 81.3% integrated 80% or more of their day. The graduation rate for special education students sits at 82.4%, which is higher than the state target.
“PPS can stand up and be proud that that's true,” says PPS Student Support Services Chief Jey Buno, of these statistics. “Because that's not the same case everywhere else.”
Nevertheless, many people PDX Parent talked to for this series described a crisis in the district: safety risks to children and staff, overwhelming caseloads and a lack of action at the top. […]
Read the full story for free at PDXParent.com: Unmet Needs: The State of Special Ed in Portland Pages 14-17
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Psychology Today: “Supermoms of Children With Disabilities”
[…]Since [her son’s autism] diagnosis, Cara’s days had been consumed with doctors, therapists and school authorities in charge of educational supports for Ray. Not surprisingly, she looked exhausted. “It’s a war,” she said grimly. “It’s a battle to get Ray the services he needs.”
I left the conversation with a sense of unease and anxiety about Cara and other mothers like her. After all, wars always incur costs, not only in dollars and cents but in human suffering and loss. I worry about the costs of the struggles Cara is going through, not only to her but also to her family, community and society at large.
We need to envision and create a system in which the care and support of persons with disabilities do not pit families against the bureaucracies and institutions that are supposed to be helping them.
The parents of children with ASD have exceptionally high levels of stress and mental and physical health issues. The work of advocacy, of negotiating for appropriate care and services for children, is a focal point of pressure. Along with the daily tasks of life, of making sure the rent is paid and food is on the table, the parents of children with disabilities are in a battle of advocacy—of navigating a dense and maze-like set of medical and educational institutions in order to access and coordinate appropriate services for their child.
[…]The Supermom/Good Advocate Mother is a myth that can inspire and empower mothers who are negotiating services for their child. At the same time, the myth fosters unrealistic expectations. If mothers in general are susceptible to guilt, the mothers of children with disabilities are especially prone to feeling like they are not advocating effectively enough for their child and that they are not measuring up to the ideal. The myth also sets the groundwork for blaming mothers for the unsatisfying progress of their child.
[…]The families of children with disabilities have played and continue to play a critical role in disability rights movements and initiatives. Their contributions include the development of such organizations as Special Education Parent Advisory Councils (SEPAC) and Parent Training and Information Centers that are charged with helping the families of children with special needs. These are important sources of support.
Still, when I think of Cara, I know there is more that needs to be done to support mothers like her.
Bottom line, parenting a child with disabilities shouldn’t feel like a war.
• From WTOP News (Virginia): “Va. families file complaint with AG alleging disabled students’ rights were violated”
Families of children with disabilities have filed a complaint with the Virginia attorney general’s office, calling for an investigation into state education authorities and the Fairfax County School Board for allegedly violating the rights of students with disabilities.
In the complaint filed last week, the families say the Virginia Department of Education “oversees a systemically defective educational system” that is “designed to obstruct, delay and ultimately prevent families with disabled children from receiving and vindicating their educational rights.”
[…]Trevor Chaplick, one of the parents who filed the lawsuit, said [Virginia Attorney General Jason] Miyares’ office should investigate “these many violations of students rights over the years, including the hearing officer system, in which the statistics that we’ve broken through a FOIA investigation are just scandalous. We’re just two families trying to correct and reform the system.”
The complaint filed with Miyares’ office asks the attorney general to investigate the school system under the Virginia Human Right Act [….]
[…A]ccording to the complaint, in Northern Virginia, over 80% of hearing officers have never ruled in favor of a disabled child in the last decade. Chaplick calls the discrepancy a scandal and violation of disabled [students’] parents’ civil and federal rights.
Parents, Chaplick said, “have no idea that they’re wasting their money on lawyers and experts that statistically, they have no chance, that the parent prevailing rate is less than 2% in Virginia.”[…]
The U.S. Department of Education has separately initiated several investigations into whether Virginia school systems have complied with the IDEA, and in June, Virginia’s compliance level changed from “Meets Requirements” to “Needs Assistance.” That’s expected to result in more oversight from the federal agency.
A Virginia Department of Education spokesman didn’t respond to a message seeking comment on the complaint. […]
• From Disability Scoop: “Feds Extend Lifeline To Disability Service Providers”
Federal Medicaid officials say they will extend some flexibilities for home and community-based services that emerged during the pandemic in a bid to help the beleaguered disability services sector stay afloat.
In guidance issued this week, the Centers for Medicare and Medicaid Services said that states can continue relying on changes that were adopted during the COVID-19 pandemic while they work to officially incorporate them into their waiver programs.
[...]Previously, states were told that flexibilities provided under what’s known as Appendix K would expire by Nov. 11, six months after the end of the public health emergency. Now, however, CMS says that states can act to extend that deadline.
[…]States have used regulatory flexibilities offered during the pandemic to allow family members to be paid as caregivers, to introduce remote supports and to alter services and reimbursement to address staffing issues, among other things, advocates said.
The extra wiggle room in extending these changes has been long sought by disability service providers who have struggled mightily to attract and retain direct support professionals, among other challenges, in recent years. A survey last fall found that 66% of providers were concerned that vacancy and turnover rates would increase once regulatory flexibilities and COVID-19 relief funding come to an end.
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