Wash. bill could ban isolation in schools; Mismanagement delays paychecks to Ala. caregivers; Families protest cuts to paid family caregiver program in Indiana
News roundup for the week of Jan. 21
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Medical Motherhood’s news roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From AL.com (Alabama): “Families of disabled children scramble to pay bills, buy food as Alabama misses payments”
Gabrielle Mays-Gordon had to put off buying groceries for her family because paying the power bill was more urgent.
Not only does her 8-year-old son need an oxygen machine to breathe, but if the heat dips below 75 degrees in her home, his muscles begin to spasm and “he’s in so much pain that it takes forever to get under control,” she said.
Mays-Gordon is one of about 7,000 Alabamians who rely on payments from the state to care for an elderly or disabled family member.
[…]AL.com spoke with a dozen families throughout the state who said they did not receive pay from Acumen, the new financial management company, on Friday as scheduled. Families also say they did not receive pay last month from Allied, the company responsible for making payments prior to the transition on Dec. 22.
[…]But for many families, the late or missing paychecks were just one part of the problem.
When Mays-Gordon logged into her online portal to see the status of her timesheet on Thursday night, she saw that her and her son’s information, including their address, contact information and the last four digits of their social security number could be viewed by anyone with a login to Acumen’s site.
“It’s too much information about a little 8-year-old to be on there,” Mays-Gordon said. “This is like a major violation of privacy.”
[…]The Department of Senior Services’ administration of the waiver program is currently under investigation by the federal Department of Health and Human Services, according to the Alabama Disabilities Advocacy Program, an organization that filed a federal complaint seeking a complete overhaul of the state agency in November of 2022.
In their complaint, ADAP alleged that the department places “extreme barriers” on disabled children and adults who are trying to access Medicaid services.
ADAP said the Department of Senior Services has failed to properly administer the waivers over the last three years due to “the failure at the highest level of ADSS to develop and maintain standard procedures for how to administer their waiver programs,” leading to fatal consequences. While the organization was preparing their complaint, two potential clients died awaiting services, ADAP said.
In response to the data breach and non-payments, ADAP on Friday told AL.com that they are “deeply concerned” about the impact they will have on families and caregivers. […]
• From the Yakima Herald-Republic (Washington): “Proposed law would ban the controversial practice of isolation as punishment in Washington schools”
In Washington schools, Black children and disabled children are disproportionately physically restrained and secluded more than children of other races or without disabilities, an advocate testified in a state hearing last week.
State law prohibits schools from restraining or isolating students unless there is an "imminent likelihood of serious harm."
Yet some students and parents have reported educators used those tactics without a situation escalating to a dangerous threshold, inflicting pain on children.
A group of lawmakers and activists is pushing for a bill that would ultimately outlaw student isolation as a form of punishment in schools. The bill would still allow for restraint if the situation is immediately dangerous and a school staffer has no alternatives.
[…]Sarah Butcher is the co-founder and director of Roots of Inclusion, an organization with the goal of making schools safer and more equitable for students. She also spoke at Tuesday's hearing in support of the bill to ban isolation in school punishment and limit restraint.
"The continued reliance on restraint and isolation is absolutely a systemic failure," Butcher said. "The antidote to stress responses and escalating behavior and trauma is not punishment and more trauma. The antidote is relationship and connection and proactive systems of support and building capacity."
Last year, Disability Rights Washington and the state American Civil Liberties Union released a report that found there were more than 24,000 restraint or isolation incidents in public schools during the 2019-2020 school year. From 2020-2021, there were upwards of 7,000 incidents — when many students weren't attending school in-person during the height of the COVID-19 pandemic.
• From WANE (Indiana): “Medicaid changes ‘devastating’ for parents taking care of disabled children”
On Wednesday, the [Indiana] Family and Social Services Administration (FSSA) announced changes surrounding Medicaid benefits.
According to the FSSA, the changes are targeted at “bringing forward a series of sustainability strategies to mitigate the impact of the forecasted need for an increased appropriation to the Medicaid program,” after spending much more Medicaid money than expected.
It was a sore point at last month’s State Budget Committee meeting.
“It’s mind-boggling, a billion dollars essentially, and you find out two weeks ago?” said Representative Gregory Porter (D).
One of those changes looks to be a trimming of what is covered under the Aged & Disability Waiver.
It’s a program that helps those taking care of individuals provide the care that a certified nurse normally would while getting paid to do so, offsetting the opportunity cost incurred by not having a full-time job.
[…]The decision to pull back on parents providing care to their disabled children for a wage is a splash that’s ripples are being felt around the state.
[…]Under the program, [mom Melissa Wilkinson] performs necessary care, administers medication, keeps a close eye on Lincoln’s condition and makes semi-regular drives to Michigan for him to receive specialized treatment.
Receiving bi-weekly payments for all the work allows the Wilkinsons to stay afloat with medical costs and necessary treatment while giving a personalized touch that would be hard for nurses, especially since Lincoln is nonverbal due to a stroke.
[…]Since the FSSA made the announcement to trim services Wednesday night, thousands have signed a petition to “Preserve Parental Attendant Care Services for Children with Disabilities.” […]
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