Happy Mother's Day from Medical Motherhood
In this week's news roundup, parents from Canada to Malaysia advocate for their disabled children's needs
Sometimes we laugh so we don’t cry. Lenore Eklund has been working on a home modification for her daughter for more than a year. “It's felt like a big saga that I've summed up into four panels for the enjoyment of parent readers!” she said when she sent along the comic for this month. I had to chuckle.
I’ve definitely summited my own Authorization Ascent or Referral Ridge. How about you?
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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 ProPublica: “The Trump Administration Aims to Penalize Disabled Adults Who Live With Their Families”
[…]The [Trump] administration is working on a rule change that would deduct the value of a disabled adult’s bedroom from their SSI allotment, even if the family members they live with are poor enough to qualify for food stamps. This would mean slashing the benefits of some of the most low-income SSI recipients by up to a third — about $330 a month in [recipient Shy’tyra] Burton’s case — or ending their support altogether.
[…]It won’t matter if the SNAP program has already determined a family is poor enough to receive aid; anyone living at home beyond age 18 without paying full rent will be treated as if they have a benefactor. The value of their bedroom as well as any income and assets their family may have will be calculated and recalculated as often as every month and deducted from their SSI check.[…]
• From Stateline : “How a legal challenge over gender dysphoria became a fight for disability rights”
[…]After President Donald Trump was reelected and his administration made clear it would not enforce the Biden rule protecting gender dysphoria, eight states pulled out of the lawsuit. Their attorneys general scrambled to distance themselves from it, amid a swift backlash from the disability community that warned the suit imperiled federal protections for all people with disabilities.
But in a surprising move, nine states chose to stick with the lawsuit anyway, and in January amended their complaint.
They’re now asking the court to strike down a part of Section 504 that requires states to provide disabled people with services in their communities whenever possible, rather than in institutions such as state hospitals and nursing homes.[…]
• From Disability Scoop: “Education Secretary Says Department Still Working To Offload Special Ed”
U.S. Secretary of Education Linda McMahon says programs for students with disabilities could be divided up among multiple agencies as the Trump administration works to dismantle the Department of Education.
McMahon told lawmakers on Tuesday that no final decisions have been made, but she signaled that her agency still intends to offload programs under the Individuals with Disabilities Education Act and the Rehabilitation Act.[…]
• From The 19th: “Who gets to speak for mothers of autistic children?”
Self-described “MAHA moms” — who embrace the Make America Healthy Again movement — spoke about unsubstantiated treatments for autism and discredited theories this week as part of a key government advisory committee. It’s a shift for the panel, which used to represent a broader mix of experiences, say mothers who used to be a part of it.
[…]“I did not feel that any previous moms were representing my issues. But that’s how government is supposed to work, right? Government is a bureaucracy. It’s not supposed to work,” said [MAHA mom Ginger] Taylor, who now sits on the committee that advises the government on autism research priorities. She was, however, careful to avoid criticizing previous mothers who were members.
“I don’t judge them. I’m not mad at them. It’s just time for different people,” Taylor said.[…]
• From News6/ClickOrlando: “Florida families caring for medically fragile children say system is failing them”
[…]According to Matthew Dietz, a disability rights lawyer and professor at Nova Southeastern University, there are between 7,500 and 10,000 medically fragile children in Florida.
“Very few of them get 100 percent of the care that they need,” said Dietz, “The hours could range between 50 percent to 80 percent of what they are granted.”[…]
• From CBC (Canada): “This app lets kids with disabilities use devices with their minds. Now anyone can download it”
When Claire Sonnenberg was born with cerebral palsy, her parents were told she would never talk, walk or do much of anything on her own.
Now the smart and smiley 10-year-old plays video games, bakes and makes smoothies and pores over books using a brain-computer interface (BCI), technology that allows her to control devices and communicate using only her thoughts.
[…]Claire has been using the technology since she was three years old through a research project run by the University of Calgary and Alberta Children’s Hospital. She wears a headband that can read her brainwaves, transmitting signals to an app that interprets them for connected devices, allowing her to communicate through a tablet.
Last month, the technology Claire uses was released to the general public as an app called Think2Switch.[…]
• From The Irish Times (Ireland): “Families of disabled children awaiting needs assessments to raise frustration in Europe”
Kildare mother Vivienne Sullivan says it has been devastating to see her son Isaac (14), who has autismand ADHD, “not thrive as he should” because his needs have gone unmet for so long.
The Leixlip boy was not provided with an assessment of need, to which he was legally entitled, for almost a decade. Though his parents applied when he started primary school, he was not seen until he entered second level.
[…]Legally the HSE must begin the assessment within three months of receipt of a valid application and complete it within a further three months.
[…]Though Sullivan cannot travel to the European Parliament’s petition’s committee in Brussels on Wednesday, three other mothers with similar experiences will tell Isaac’s story along with their own children’s.[…]
• From The Sun (Malaysia): “To parents of children with disabilities: You are not alone (Opinion)”
[…]Parents of PWD need to remember: You are not weak and you are not failing. You are doing one of the hardest jobs any parent can do. Your child does not need a perfect parent, only one who is present, informed and full of love.
Love your child as they are, prepare for their future bravely and remember: you are not alone.
In Malaysia, change may be slow but it begins with parents who refuse to stay silent, who register their children, who speak up and who support one another.
This has been proven in many countries, including the United States, Netherlands, New Zealand and Taiwan. For parents who wish to advocate more effectively for their children, remember: data is power, community is strength and love, and when paired with action, creates real change.
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