The Ghosts of Accessibility Past
Plus: Court smacks New Mexico for lack of nursing services; Report sees massive disparity in access to college readiness programs; and Maine girl gets out of the E.R. after nearly a year
On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.
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 Santa Fe New Mexican: “Appeals court affirms order for state to provide sufficient in-home nursing services for children with life-threatening illnesses”
The New Mexico Health Care Authority must provide in-home nursing services to children with life-threatening illnesses, the U.S. Court of Appeals ruled recently in a decision affirming a previous federal district court ruling and clearing the way to expand it beyond the three original plaintiffs.
The ruling, handed down in mid-September, came in a yearslong suit filed in April 2022 on behalf of three children facing serious illnesses who, attorneys say, required in-home nursing services but weren’t receiving them in full. One of the three original children in the suit recently moved out of state to get services, and another died after being hospitalized for a medical emergency while the suit was pending.
The Health Care Authority has argued that providing such nursing services is complicated by a nationwide shortage of nurses, according to the September ruling. But that argument was rejected by Tenth Circuit appellate court judges, who upheld a May 2023 order from U.S. District Court Judge Margaret Strickland partly granting a preliminary injunction to plaintiffs. She ordered the Health Care Authority to arrange corrective in-home nursing services to the children. The agency appealed but lost with the recent ruling.
[…]As of late October of last year, there were at least 57 medically fragile children under the age of 21 who didn’t receive the number of nursing service hours they were supposed to, according to a February court filing.
Yet the total number of such children not receiving the nursing services has yet to be determined, Simmons said. “Now [it’s] time to make this permanent, applied to all these kids,” Simmons said. “Let’s solve this problem.”
• From The Portland Press Herald (Maine): “After 304 days in the ER, Bingham girl finally gets a home”
Wearing powder blue Stitch pajamas, Abby Bedard smiled broadly and thrust her arm out to point at dozens of family, friends and staff at Redington-Fairview General Hospital.
Her supporters clapped and hooted as the 13-year-old rolled her wheelchair out of the hospital’s emergency department and to a van that would take her to her new home, and a new beginning.
The happy scene was long overdue.
Abby had been stuck at the Skowhegan hospital’s ER for 304 days.
She resided for months in a small, sterile hospital exam room not designed for patients with Abby’s long-term mental, developmental and physical needs.
Abby was kept nearly a year away from school, separated from the community. She spent holidays in the emergency department, and didn’t get to hang out with friends, eat dinners at home with her family or do any of the typical activities other teens enjoy. Her parents – Sue and Mike Bedard – visited often, and the hospital’s staff did what they could. But it didn’t change the fact that Abby was living in the ER because there was nowhere else she could go to get the care she needs and is entitled to under federal law.
Young patients like Abby who languish for months in hospital emergency departments are part of the reason that the U.S. Department of Justice filed a federal lawsuit against the state in September, saying Maine is violating the Americans with Disabilities Act by failing to provide adequate services to disabled children in the Medicaid program. DOJ and state officials are discussing what happens next, but it could result in a settlement or court takeover of what the federal government says are insufficient services for some of the state’s most vulnerable children.
[…]There are only two years of data on how often this occurs. According to state data for pediatric behavioral health patients who were cared for in emergency departments, the average stay increased from 13 days in 2022 to 23 days in 2023. The number of pediatric patients who stayed more than 60 days increased from three in 2022 to nine in 2023.
The actual figures are likely higher for a number of reasons, including incomplete data sent to the state by hospitals, according to the Maine Hospital Association. […]
• From The 74: “Report: Almost All Disabled Students Lack Access to College Readiness Programs”
[…]Organized as a series of six briefs, a new report from the Center for Learner Equity finds a devastating lack of access to the opportunities that make college possible.
In the 2020-21 academic year, just 4.4% of charter school students with disabilities and 2.8% of those in traditional schools took Advanced Placement classes, versus 21% and 15% of general education students, respectively.
Just 2.6% of charter school special education students and 3.4% of those in district-run schools took dual-enrollment college and university courses, versus 11.5% and 8% of their general education classmates.
The number of youth with disabilities taking college admissions tests was less than 10% in district-run schools — half the rate of general education students. Almost 9% of special education students in charter schools took the ACT or SAT, compared with 13% of their non-disabled peers.
[…]Researchers cautioned that those rates were likely impacted by COVID-related school closures and an increase in the number of colleges making the assessments optional. But they noted that the disparity has persisted since 2012.
“The bottom line is that the overall percentages are just unacceptable,” says Jennifer Coco, the center’s senior director of strategy and impact. “The research shows that 85% of students in special education are capable of achieving on grade level. There’s no barrier that’s stopping them if their needs are met.”
[…]In 2023, the six-year graduation rate for disabled students attending four-year colleges was 49.5%, compared with 68% of non-disabled students. Just 37% report their disability to their college, and of those who do, many don’t receive accommodations. A bill before Congress, the RISE Act, would require colleges to make it easier for students to get disability supports.[…]
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