Medical Motherhood
Medical Motherhood
Medicaid coverage crisis; the school bus blues; and LEGO's Braille breakthrough

Medicaid coverage crisis; the school bus blues; and LEGO's Braille breakthrough

Also: catch me on OPB's Think Out Loud this Tuesday

This basket of love is where medical mama Jennifer L. keeps her sons’ expired Epi-pens. “There are a huge amount of insurance copays in this basket,” she said. “But I’m so thankful these did not need to be used for either of my two sons, who have many anaphylactic food allergies.”
Each week, we showcase a picture of real life from the Medical Motherhood community. Please send in your pictures! What do you want people to know about the #medicalmom life?

Thank you for all the kudos on the NPR story last week and welcome to those of you who are new subscribers! Your readership is appreciated.

Those of you who are local to the Portland area — or who want to check out the feed online — should tune in to OPB Radio this Tuesday at noon. Sometime during that hour, I’ll be speaking with host Dave Miller about the potential for Medicaid money in Oregon schools. We’ll also look at some of the local barriers that are still in place that could stymie federal efforts to get all kids on Medicaid access to medical and behavioral health care while at school.


Leave a comment

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From CNN: “An ‘obscene’ number of kids are losing Medicaid coverage

For months, Evangelina Hernandez watched helplessly as her autistic twin sons regressed – their screaming, biting and scratching worsening. The Wichita, Kansas, resident couldn’t afford the $3,000 monthly tab for their 10 prescriptions or their doctor visits without Medicaid.

The toddlers, along with three of their sisters, lost their health insurance in May, swept up in the state’s eligibility review of all its Medicaid enrollees. Hernandez said she only received the renewal packet a day before it was due and mailed it back right away. She also called KanCare, the state’s Medicaid program, and filled out another application over the phone, certain that the kids remained eligible.

Yet, every time she inquired about the children’s coverage, she was told the renewal was still being processed. And though her partner works for an airplane manufacturer, the family can’t afford the health insurance plan offered by his employer.

“My kids are suffering. You can see it,” said Hernandez, who along with her infant daughter, remained on Medicaid thanks to coverage provisions for low-income, postpartum mothers and babies. “The medication they’re on, I can’t afford it.”

Just over a week ago, Hernandez got the call she had been waiting for: The kids’ coverage was reinstated. However, the pharmacy told her it could not immediately fill her sons’ prescriptions because it had to get their new enrollee information – and even then, she could only pick up the medication for one son because there were errors in her other son’s file.

The delays have consequences. Once they start taking the medications again, it will take about a month before their behavior starts to improve, she said.

All across the US, hundreds of thousands of children are being kicked off of Medicaid, even though experts say the vast majority continue to qualify. They are among the more than 87 million people in Medicaid and several million more in the Children’s Health Insurance Program who are having their eligibility checked and are facing possible termination of coverage for the first time since the Covid-19 pandemic began.

States regained the ability to start winnowing their Medicaid rolls of residents whom they deem no longer qualify on April 1, when a pandemic relief program expired. Since then, at least 5.4 million people have lost their benefits, according to KFF, formerly the Kaiser Family Foundation.

[…]As many as 6.7 million children are at risk of having their benefits terminated during the so-called unwinding process, according to Georgetown University’s Center for Children and Families. Roughly three-quarters of them are expected to remain eligible for Medicaid but will likely lose coverage because of administrative issues, such as their parents not submitting the necessary paperwork or errors made by state Medicaid agencies.

[…]In Kansas, where nearly 46,000 youngsters have been disenrolled so far, multiple groups are setting up tables at back-to-school events, working with school nurses and doing outreach through early childhood organizations, said Heather Braum, a health policy adviser at Kansas Action for Children.

[…]However, more should be done to improve the system and make sure eligible children maintain their coverage, Braum said.

“Kids’ medical care in so many situations can be very time sensitive – where they’re getting therapies and treatments and prescriptions,” she said. “If it gets delayed, it can have a permanent impact on their lives. Outcomes can be very different. And that’s inexcusable to me.”

• From The Washington Post (columnist Theresa Vargas): “For disabled D.C. students, an uncertain wait on school buses remains

Elizabeth Daggett felt so skeptical that her son’s bus would show up on time for the first day of school that she took the morning off from work.

By 6:40 a.m., just in case she was wrong, she made sure her 12-year-old son, Henry, who attends a school for children and young adults with intellectual disabilities, was dressed and ready.

By 6:52, a.m., to her surprise, she watched a bus pull in front of the family’s D.C. home. In that moment, it seemed, her worry had been unwarranted.

By 7 a.m., the brief hope she held for an easy morning was gone. She watched that bus [which didn’t have the right equipment for her son] drive away, without her son on it.

[…]Not knowing when the replacement bus might arrive, Daggett decided that when her husband returned with their car after taking their other children to school, she would drive Henry to his school, St. Coletta of Greater Washington. His school day is supposed to start at 8:30 a.m. They walked into the building at 9:15.

When students arrive late, parents are expected provide a reason for their tardiness on a sign-in sheet. As Daggett signed that paper, she noticed the word “bus” appeared more than once.

Bus issues on the first day of school aren’t unusual. They happen every year in communities across the country. But in D.C., parents of disabled students spent several months during the last school year pleading with the city to fix issues that were causing buses to arrive late or not at all, leaving families facing daily uncertainties that derailed the schedules of parents, students and educators.

D.C. is responsible for providing buses to transport students with disabilities to their schools, but the unpredictability of those buses has caused parents to miss work, students to miss school, and educators who had already worked long days to stay longer. It has also caused children to arrive home late, sometimes soaked in urine.

City officials in the spring acknowledged the need for improvement. They pointed to a national bus driver shortage and staff call-outs as forcing them to make complex decisions about routes, and they said they put in place several measures to improve service. The Office of the State Superintendent of Education’s division of student transportation held a hiring fair, launched an employee attendance incentive and created a website to list which routes were running late.

When school started Monday, families weren’t sure what to expect. But what some have experienced so far has not eased their worries. I spoke with several families who said more work is needed. They said that they have seen improvements when it comes to the number of routes being covered, but daily uncertainties remain because of late or unprepared buses and a lack of communication. […]

“Having a child with special needs, you are facing roadblocks in many parts of your life,” [dad Andy McKinley] said, “and it would be nice if this part of the school system worked as it should.”

[…]“Resigned” is the word [mom Caitlin] Givens used to describe how she was feeling that day. “We’ve been dealing with this for so long. We pretty much just expect it to not function well,” she said.

[…]We live during a time when we can tell how far our food delivery is from our house. These parents shouldn’t have to put Apple AirTags on their children to know when they might get home. The city can fix these communication issues, and it should do it sooner rather than later. Already, families have waited too long.[…]

• From The Guardian: “Lego to sell bricks coded with braille to help vision-impaired children read

Lego is to begin selling bricks coded with braille to help blind and partially sighted children learn to read the touch-based alphabet.

The Danish toymaker has been providing the specialist bricks, which were tested and developed in partnership with blind organisations around the world, free of charge to a selection of schools and services catering for vision-impaired children since 2020.

From next month, shoppers will be able to buy packs of the bricks, which have studs corresponding to the braille version of numbers and letters with a printed version of the symbol or letter below, to use at home.

Lego hopes the initiative will help parents and siblings share in learning braille, and the packs will include ideas for a range of educational games that families can play together.

[…]Lisa Taylor, mum to seven-year-old Olivia, said: “Olivia first discovered Lego braille bricks at school and they had such a big impact on her curiosity for braille. Before then, she found it hard to get started with the symbols but now she’s improving all the time.”

[…]“To have a set at home changes everything. We can play with braille together as a family and she can introduce braille to her little sister in a way they both love. Lego braille bricks are accessible for her without being really different for other kids, so she gets to play and learn just like every other child,” Taylor said.

The packs aimed at children aged six and over will be available to buy in six English-speaking countries including the UK, Ireland, the US and Australia, and five French-speaking countries including Belgium, Canada and Switzerland. Italian, German and Spanish versions are expected to launch next year.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on FacebookTwitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Medical Motherhood
Medical Motherhood
News, essays and insights on the experience of raising disabled children. Sign up for our free weekly newsletter at