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TN explores rejecting federal ed dollars; Caregiving to be top issue in 2024 campaign; Amazing wheelchair costumes
News roundup for the week of Oct. 29
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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 Tennessean: “'Just listen': Why disability advocates are warily eyeing federal education funding debate”
When Kim Boyd heard Tennessee might give up billions in federal education funding, her first reaction was panic.
She knew the public education her son Ty receives largely rests on federal disability law, which established a right to a free and “appropriate” education in 1975, at a time when the vast majority of children with disabilities were educated in institutions.
“My first thought was how would this affect my child?” Boyd asked. “How would this affect other children? How would this affect those school-aged children that depend on the schools, on the public education system?”
Parents and advocates are now asking state lawmakers to carefully consider and listen to the disability community when a legislative working group begins meeting next month to determine whether the state can reject the funding and recommend a strategy for how to do so before the January legislative session.
[…]Tennessee received more than $10.4 billion in federal education funding between 2019 through 2023, per a Department of Education report prepared in February at the request of House Speaker Cameron Sexton, R-Crossville.
[…]More than $1.7 billion of that pot was specifically designated through the Individuals with Disabilities Education Act, or IDEA, which protects the education rights of the more than 135,000 Tennessee children attending public schools with some form of a disability, per 2021 data.
“It feels like an abyss when you think about billions being in play here,” said Sarah Cripps, a Tennessee lawyer and advocate who was born blind. “What does it look like on the other side of rejection? I don’t know the answer, but it’s frightening to me, personally, for such vulnerable populations.”[…]
• From Roll Call: “As 2024 nears, advocates push for caregiving as campaign issue”
Family caregivers are seeking to make their plight a 2024 campaign issue after the COVID-19 pandemic exposed the lack of support for the more than 53 million people who provide unpaid care to parents, spouses, friends and disabled children.
Exhausted from shortages of workers who help care for people who need it and the rising costs of caregiving, advocates argue caregivers could become a powerful voting bloc in next year’s elections.
“The pandemic laid bare the fact that this country doesn’t have a caregiver infrastructure,” said Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations.
“This is an issue that the government can step in on because they have,” she said, referring to temporary funding Congress passed for child care and services that help older people and people with disabilities stay in their homes.
During the pandemic, Medicaid programs in many states also allowed payments to caregivers and Congress required certain employers to provide paid leave related to COVID-19.
While groups like Caring Across Generations and AARP have long pushed for politicians to support unpaid family caregivers, they are hoping the pandemic has brought more attention to the issue and demonstrated the need for a permanent solution from the federal government.
[…Nancy LeaMond, AARP’s executive vice president and chief advocacy engagement officer] said there’s bipartisan support for policies that help caregivers.
But that support begins to fall apart when costs are discussed.
“There’s progress on policy,” she said. “There just isn’t any progress on actually getting anything done.”
Liam has a rare, genetic disorder called MCT8 deficiency (also called Allan-Herndon-Dudley syndrome), which causes severe developmental delays. Liam is non-verbal and he's fed by tube, so he can't enjoy Halloween candy.
His mom still wants Liam to be able to experience Halloween, so she makes elaborate costumes for him. The get-ups always include cardboard boxes for their durability and size, which she decorates with acrylic paint. "I start the costumes about four days before Halloween and stay up all night working," says Bolufé.
For many children who use wheelchairs, Halloween is the one day of the year when their mobility aids can be part of an epic disguise.
[…]Trick-or-treating can be difficult for children with disabilities, including for those who use wheelchairs. Companies like Disney, Party City and Target sell adaptive Halloween costumes, but they don't work for everyone.
"Making a huge, elaborate costume is an overwhelming task and these accessible costumes make it that much easier for parents to give their kids a special experience," Ryan Miller, whose son Jeremy has spina bifida, tells TODAY.com. "My main concern is if they require children to reach over the costume to push their wheels. Each chair is unique and trying to provide something that will work for everyone is almost an impossible task."
[…]Jeremy loves the attention he receives on Halloween, says Miller, noting that his costumes aim to draw people to Jeremy rather than overshadow him.
Once Jeremy entered high school, Miller stopped building Halloween costumes for his wheelchair, which frees up his family's time but leaves them nostalgic. Jeremy is content with that — this year, he is dressing as Nirvana's Kurt Cobain, a costume that doesn't require a wheelchair addition.
[…]Sometimes [Amy Castanon and her 15-year-old son Isaiah] pair up for joint looks: Frankenstein and his bride, Wayne and Garth, Batman and Robin and Beetlejuice and Lydia. Isaiah's wheelchair always represents a related prop.
This Halloween, Castanon and Isaiah will be aliens with a UFO.
“Halloween is about having fun on a day like everybody else,” she says.
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