Adding 'Emergency Planner' to the Mom Resume
Plus: Trump administration cuts land on Arizona paid parent program, children's hospitals and other disability programs, and AI leads to innovations in accessibility at school
This month’s comic hit close to home! If a fire breaks out at my son’s school while he is on the second floor, the plan is to park him in the “area of rescue assistance.” They would leave him there while everyone else evacuates — then hope firefighters find him. And hope he doesn’t panic and drive away from the designated spot!
When I raised concerns, I was told that first responders “know” to check those areas. But in talking with experts, I learned that there’s no guarantee anyone would be aware that a disabled child was waiting there. The safest plan would actually be for a staff member to stay with him and call 9-1-1 directly. Likely because of liability and labor rules, the school refused to make that the official plan. Eventually, I was personally reassured that he wouldn’t be left alone in an actual emergency — but the “planning” process doesn’t exactly inspire confidence.
This is what it’s like parenting a medically complex child in the public school system. You find yourself not only tracking therapies and insurance authorizations but also second-guessing evacuation plans and writing your own disaster protocols. It’s exhausting — and yet, what choice do we have? Like the mom in Lenore’s comic, sometimes the only option is to add another job title to the ever-growing list of roles we never applied for but do every day.
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 KFF Health News: “Trump’s Medicaid Cuts Were Aimed at ‘Able-Bodied Adults.’ Hospitals Say Kids Will Be Hurt.”
Republicans insist that President Donald Trump’s cuts to Medicaid were aimed at reducing fraud and getting more of its adult beneficiaries into jobs. But the side effects may include less care for sick kids.
Some children’s hospitals collectively stand to lose billions of dollars in revenue once Trump’s wide-ranging tax and spending law, which Republicans called the “One Big Beautiful Bill,” is fully enacted, according to the Children’s Hospital Association. Kids account for nearly half of enrollees in Medicaid, the state and federally financed health program for low-income and disabled people, and its related Children’s Health Insurance Program.
[…]Throughout debates over the measure, Republicans insisted the Medicaid cuts would affect only nondisabled adults enrolled in the program who don’t work and immigrants living in the U.S. without legal status.
[…]Medicaid typically pays lower rates for care than commercial insurance or Medicare, the federal program for people age 65 and older.
[…] supplemental payments, known as state-directed payments, are financed largely by federal taxpayers through complicated tax arrangements adopted by nearly all states.
[…]The extra Medicaid funds, on average, make up more than a third of children’s hospitals’ total Medicaid revenue and about 14% of their operating revenue overall, according to the Children’s Hospital Association.
[…]Brian Blase, president of the conservative Paragon Health Institute and a key architect of Medicaid changes in the new law, […] said state-directed payments to children’s hospitals and other facilities amount to “corporate welfare,” often helping financially strong institutions get richer.
Blase said states have little incentive to pay hospitals less because the money from state-directed payments comes mostly from federal taxpayers.[…]
• From Arizona Mirror (Opinion): “Arizona’s disabled children will pay the price for Trump’s ‘beautiful’ tax cut bill”
When Republicans in Congress rallied to pass President Donald Trump’s so-called One Big Beautiful Bill over the summer, leaders in the disability community knew there would be consequences. Arizona saw the first of those last week.
[…]Through these policy changes, families will see a sharp reduction in service hours for their children, as Arizona struggles to rein in spending and prepare for the billions of dollars it will lose when different parts of the Republican federal spending plan are enacted. Many families who currently work 40 hours a week with their disabled children — teaching life skills, helping them learn emotional regulation and keeping a watchful eye on them 24/7 to ensure they don’t run away — will see their hours reduced to just five hours a week, and in some cases to zero.
Many of the leaders of the disability community saw this coming. Throughout history, when a state’s budget needs to be cut, the disability community is among the first to bear the brunt.
[…]The cold, hard, devastating truth is that so many of the Home and Community Based services parents rely on (habilitation, respite, attended care) are optional, even if they are vital to ensuring that children with disabilities grow into adults who can live purpose-filled lives. So, when budgets need to be balanced, disability supports are cut first — because they can be.[…]
• From New America: ““So Much to Say, No Way to Share It”: How AI Can Change the Game for Learners with Disabilities
For Jillian, a freshman in high school, her every movement and act of communication has to be intentional, thought out, and often translated through someone else’s interpretation. Born with cerebral palsy and diagnosed with autism, she is non-verbal, requires a wheelchair, needs a GI tube for eating, and has little control over her body.
[…]After six years of evaluations and insurance approvals, Jillian finally received her Tobii and her world began to shift. The day she realized she could change a streaming channel on her own, she understood she had the autonomy to change more. At the hospital, she used her device to tell nurses she felt sick and needed to lie down, or to advocate for herself against being given unnecessary medication. “That was profound,” [her dad] Mick remembers. “She could finally tell us what her body needed.”
[…]Technology has long helped students with diverse educational needs—but artificial intelligence (AI) is a game changer, according to Bruce Alter, a physical therapist and assistive technology consultant for the Oregon school district Jillian attends. “This is the first time we’ve had the tools that are needed for the most severely disabled kids to fully express themselves and to achieve and to have high academic achievement.”
[…]“Imagine trying to write a paragraph while half your attention is on how to physically get each word out, and the other half is desperately trying to hold onto the thought you started with,” Alter explained. That’s where AI is beginning to change everything. He built a system that transcribes a few spoken keywords and, with a single keystroke or eye-gaze selection, uses a large language model to expand them into a full response.
[…]AI is also opening doors beyond speech: For visually impaired students, smart phones can capture text from a photo and read it aloud. AI can generate alt text to describe charts and graphs through audio, customize reading materials for grade level, and rapidly tailor assignments to provide students with materials that match their interests and abilities.[…]
• From Oregon Public Broadcasting: “Trump administration cuts funding to Oregon disability programs”
The U.S. Department of Education is ending grants to programs across Oregon that support students with disabilities, citing practices related to diversity, equity and inclusion.
The cuts could make it harder for disabled students and their families to access help, especially in some of Oregon’s poorest rural communities.
The Trump administration cut funds for a statewide program that supports deaf and blind students in districts from Portland to Southern Oregon.
It moved to end a grant to Western Oregon University for its DeafBlind Interpreting National Training and Resource Center, pointing to its equity policies and writing in an Aug. 27 memo that the administration “has determined that continuation of the project is not in the best interest of the Federal Government.”
The Central Oregon Disability Support Network, which serves more than 4,000 families, also saw its funding cut because of a “conflict with the Department’s policy of prioritizing merit, fairness, and excellence in education,” according to a memo the nonprofit received. The funding was earmarked for helping students with disabilities and their families navigate special education programs.
The Central Oregon group’s 2021 application noted that it was continuing “to actively pursue professional development related to diversity, equity and inclusion.”[…]
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Shasta, your newsletters are always so informative. I have experienced wearing the emergency preparedness has at my daughter's schools sometimes. Thankfully, her teachers also spoke up to the school admin team to inform them of deficiencies in their plans as they related to the most impaired students at the school.
I also appreciate the articles that are shedding light on exactly how the Big Beautiful Bill is directly affecting children with disabilities and their families. So many people argued that this legislation would not hurt children and people with disabilities when we all knew otherwise. These articles are proof. Thank you.