Medical Motherhood Shasta Kearns Moore

Each week, we showcase a picture of real life from the Medical Motherhood community. Submit one! If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life?
Subscribers, it’s time to say goodbye to the podcast version of Medical Motherhood. I’ve recorded nearly 100 episodes and learned a great deal about audio production! I would like to focus more time on producing short videos — like TikToks and Reels — and don’t seem to be able to find the time to do it all. I regret not being able to provide this format to those who prefer it. But, I have applied for Substack’s new text-to-speech function and hope it will be available soon. As always, I’m available for feedback by simply replying to this email. I hope my new videos are a helpful way to consume this content and thank you for listening for the past two years!
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From PBS News Hour: “Lawsuit accuses Catholic schools in New Orleans of discriminating against students with disabilities”
It’s homecoming season, but one 16-year-old is missing the rite of passage this year.
The sophomore, who has cerebral palsy and uses a wheelchair, is home-schooled — and not by choice.
The teen’s family has sued two local Catholic schools over what it describes as discriminatory admissions practices against students with physical, emotional, or learning disabilities. Now, it has joined a class-action lawsuit that claims that the Archdiocese of New Orleans asks illegal questions about students’ disabilities on its schools’ application forms.
The lawsuit said this kind of practice has denied students with disabilities the opportunity to go to a Catholic school run by the archdiocese.
“We’re very angry at the Catholic Church. We have not been back to church since this happened,” said her mom, who asked that she and her family not be named to protect her daughter’s identity. “The fact that the Catholic schools did this to us and no one from the Church even stepped up to make a comment, tried to help us, or offer any kind of empathy and support — it’s very disheartening.”
[…]The lawsuit claims that by asking unlawful questions about disabilities and requesting medical information of prospective students before they are enrolled, New Orleans-area Catholic schools are violating the Louisiana Human Rights Act, which does not have a religious exemption, and the Louisiana Civil Rights Act for Persons With Disabilities, which explicitly prohibits asking such questions as a matter of admissions.
The suit also alleges “widespread segregation” of prospective students with disabilities in New Orleans-area Catholic schools, accusing the Archdiocese of New Orleans of directing parents of students with disabilities to apply to a small handful of schools for “exceptional learners,” in violation of both acts.
The lawsuit, originally filed in 2022, was put on hold for close to a year by a judge overseeing the archdiocese’s bankruptcy proceedings, which now includes 500 claims of child sex abuse by priests and other clergy. This year, another judge said the outcome of the bankruptcy process would have no bearing on the discrimination case and allowed the suit to move forward.
A trial date has not been set.
[…]Louisiana has one of the highest rates of private school enrollment in the nation, in part because of the local Catholic culture. More than 518,000 of the 1.2 million people in the New Orleans area identify as Catholic, according to the archdiocese. Twenty-five percent of New Orleans-area students attend private school, more than twice the national average, according to the Cowen Institute at Tulane University, which studies the city’s public education system.
[…]The archdiocese di

As the days get darker and the Halloween decorations come out, I wanted to republish this piece from last year. I still think about my conversation with haunted house creator and medical mama Chrissa Paradis and how cathartic a good scream and a giggle can be.
Here’s an excerpt. Follow the link below for the real deal:
[…] As parents to kids with medical emergencies — or the isolating subset of folks who have to deal with the real possibility of child death — visceral terror is not funny or theoretical: It’s some of the most real moments of our lives.
But perhaps, even for us, recreational fear can be healthy.
“As someone with a heavy amount of stored trauma — screaming, the act of literally screaming and releasing — you feel it free some of that,” says medical mama Paradis, producer and director of guest services at ScareGrounds PDX. “It really does have a restorative nature.”
Paradis says it has also been interesting to see how her staff have benefited from creating scares. She says about half of the cast members are LGBTQ and have experienced a lot of struggle in their lives — either coming to terms with themselves or with their family and friends’ reactions.
“They all find that creating the scares and taking that control is very healthy for them,” Paradis says. “So we kind of see it on both sides of how this environment provides some very primal healing.”[…]

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 Texas Tribune: “Disability advocates argue against school vouchers in Texas Senate hearing”
Questions about how a voucher program would — or wouldn’t — serve children with disabilities took center stage at a Texas Senate education committee hearing Tuesday to discuss the main school voucher bill on the table during the Legislature’s latest special session.
Senate Bill 1, authored by Sen. Brandon Creighton, R-Conroe, would use taxpayer dollars to create education savings accounts, a voucher-like program that would give families access to $8,000 a year to pay for private school tuition and other educational expenses.
Voucher proponents argue that education savings accounts would allow students with disabilities access to specialized schools if public schools are not meeting their needs. Opponents, however, have pointed out that private schools, unlike public schools, are not required by law to provide special education services.
Some disability advocates have raised concerns about funneling public dollars into private schools when the state’s public school system, which serves most special needs students in Texas, remains underfunded. The number of students with disabilities in Texas has increased by 200,000 in the last five years, according to Steven Aleman, policy specialist at Disability Rights Texas.
“Our public school enrollment is growing. Our special education population is growing,” Aleman testified Tuesday. “We need to focus on supporting that system first and foremost, and [education savings accounts], quite frankly, are just a luxury we cannot afford.”
[…]Mandy Drogin, campaign director of an education initiative for the conservative think tank Texas Public Policy Foundation, argued the opposite. Drogin said she recently heard from a mother whose son with Asperger’s syndrome tried to take his life after repeated bullying in public school for his disability.
“I have heard thousands of parents begging for the opportunity to speak for their child and unchain them from a school that is not serving them,” Drogin said.
[The Senate bill’s author acknowledged the potential for discrimination in private school entry but said that should be worked out as a separate bill.
[…]“Although I understand your concerns that private schools have the ability to approve or deny based on that framework within that private school, moms and dads will be much smarte

The care economy is a reality that businesses across the spectrum need to reckon with, particularly as the job market continues to improve. Flexible work options and outcomes-based metrics are key to allowing family caregivers a place in the workforce.
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 Well+Good: “Parents of Kids With Disabilities Are in Mental Health Crisis”
[…]as study after study after study shows, high levels of stress and mental health strain are incredibly common among parents of kids who have disabilities.
Talk to any parent whose child has a disability, developmental condition or delay, neurodivergence, or other unique needs, and you will find that these things are true: They love their children with an inextinguishable fierceness, they're locked in a constant struggle to secure services for their children that would help them thrive, and they often feel isolated and forgotten.
All of this can negatively affect a parent’s mental health in both the short- and long-term. "Based on my clinical experience, isolation, anxiety, depression, and burnout are common mental health issues faced by parents of kids [with disabilities]," says Tasha Oswald, PhD, a psychologist and the founder and director of Open Doors Therapy, a neurodiversity-affirming counseling group. She points to the "greater responsibilities" of parents whose children will not usually meet milestones on typical timelines, if ever: "The kids will need more help from their parents along the way. In addition, there are fewer relevant parenting resources and [more] misinformation. So, your job is harder and you’re given fewer resources. And on top of it, you likely don’t have a community who gets it."
[…]To be clear, children are not the cause of parents' mental health challenges. Instead, the stress and burnout associated with parenting a child with disabilities comes as a result of navigating a complex and ever-evolving system of care. It's the expensive evaluations, the clinical visits, the endless mountains of paperwork, appointments to schedule and reschedule, phone calls to insurance companies, and—more often than you might imagine—legal battles to secure necessary services like medicine, equipment, and education. "There's a lot of trauma that goes into parenting kids like ours," says [mom Samantha] Kilgore. "But it's not from dealing with our children's challenges—it's from negotiating our child's right to exist in a world that is not set up for them. The fact that we even have to negotiate is enraging." 
Elizabeth Hughes, PhD, BCBA, the executive clinical director at the Institute for Applied Behavior Analysis in Orange, California, says that "trauma" is indeed the appropriate word to describe what parents of kids with disabilities must navigate bureaucratically and administratively.
[…]Similarly, Jessica Miller*, whose daughter was born with hearing loss, points to red tape around access to care as being problematic. "My mental health issues are not stemming from her disability," she says. "They're from how we're having to manage everything around it that the world presents to us, whether that's education systems or trying to get supportive therapies or even going to the doctor for more hearing tests."
[…]Well-meaning people often tell burned-out parents of kids with disabilities to prioritize self care, but a spa day or therapy session can't solve what's inherently a societal and systemic problem. "I've taken advantage of therapy and medication, and I've gone to different support groups," Miller says. "Those are all really important, but they're also very individualized solutions. So I try to also keep in mind: At the same time, what can I be doing on a structura

This week, I gave testimony to an Oregon legislative committee on the importance of figuring out Medicaid billing in schools. That was the subject of the investigation I co-reported with Emily Harris for NPR:
Schools could be getting millions more from Medicaid. Why aren't they?
You can watch and read all of the testimony on the House Interim Committee on Education’s website. Here’s a link to the video that starts when the topic does. My portion starts at minute 40:00 but please listen to all of the invited testimony on the topic.
If you prefer to read it, here’s what I wrote for my speech:
Chair Neron, Vice Chair Wright and members of the committee,
My name is Shasta Kearns Moore and I’m a freelance reporter and founder of MedicalMotherhood.com
Thank you for inviting me to speak with you today about the findings of an investigation into Medicaid money in schools that I co-reported recently for NPR.
More than 42 million American children — about half of all minors — are on Medicaid. The head of Medicaid and CHIP told us he envisions a world where all of those children can get the healthcare they need at school instead of having to miss days to travel to appointments or simply not get the care until it is more costly… or too late. To meet that goal, Medicaid has streamlined its rules and processes and created a technical assistance center to aid school districts in qualifying for funding. States simply need to do their part in updating their plans and modernizing their records systems.
Schools are already providing billions of dollars in health services to K12 students. Medicaid could be a way to finally fund the underfunded mandate of the Individuals with Disabilities Education Act that affirms the civil rights of all children to a public education.
The CDC estimates that about one in six children between the ages of 3 and 17 have a developmental disability. This is the most common type of disability in childhood. These are things like autism, cerebral palsy, and other neurological disorders. As recent research into neuro plasticity has shown, the proper approach to these disabilities is a brain-based, LEARNING approach. Education and health care actually have a lot they can learn from one another when it comes to childhood-onset disabilities and mental health conditions.
Integrating the nation’s school and healthcare systems would have massive benefits for the future generations of this country. You have the opportunity to break down the barriers between different buckets of money that taxpayers would like to see going to actually benefit the qualified child — rather than getting stuck in a maze of bureaucracy.
Other states have figured this out already. Chicago Public Schools estimates it will get about $50 million in reimbursements this year. Texas got $741 million from the federal government in 2021. Oregon has already tried a pilot project from SB 111 and with its state plan amendment approved this year, there’s a potential for the funding that students with IEPs and 504s have been promised.
Thank you for looking into how students can get the health services they need in the classrooms they are already in.


Friends, I’m considering ending the podcast’s run. If an audio version is something you really need or want, will you please let me know? Orr, if you have ideas for how the podcast can be improved, let’s hear them! Thanks!
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Oregon Capital Chronicle: “Did Oregon children eligible for Medicaid lose coverage?”
[…]In Oregon, 472,000 children qualify for Oregon Health Plan benefits, including about 8,400 who lack residency documents. Oregon has extended those benefits to undocumented immigrants through a state program – Healthier Oregon Program, or HOP, that uses federal and state funds.
[…]Health authority officials were due to meet with thei

Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. What are you seeing this week?
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 Oklahoman: “Oklahoma lawmakers to study corporal punishment for disabled students”
The two state lawmakers who tried unsuccessfully this year to ban the use of corporal punishment for public school students with disabilities will hold a joint study on the issue in October.State Sen. Kay Floyd, a Democrat from Oklahoma City, and Rep. John Talley, a Republican from Stillwater, said their study would focus on the use and effects of corporal punishment on public school students with disabilities.Corporal punishment usually is defined as a physical punishment designed to inflict pain on an individual.During the 2023 legislative session, Floyd and Talley co-authored House Bill 1028, which would have prohibited the use of corporal punishment on students identified with significant cognitive disabilities. The measure passed the House 84-8 in March but stalled a month later in the Senate.Floyd said some lawmakers had misconceptions about the bill. She said there was a concern the corporal punishment ban would apply to all public school students.
[…]Oklahoma is one of only 19 states that still allows the use of corporal punishment. At present, more than 60 state school districts still allow corporal punishment with parental consent.Nationwide, roughly 90% of the country's schools no longer use corporal punishment. Of the schools that do, most are located in Southern states, reports show.[…]
• From the Montgomery Advertiser: “Federal lawsuits allege 'systemic discrimination' of disabled kids in Alabama facilities”
Six federal lawsuits were filed Wednesday against Alabama Department of Human Resources Commissioner Nancy Buckner and State Superintendent Eric Mackey for their agencies’ roles in committing alleged “flagrant violations of the Americans with Disabilities Act.”
Each lawsuit was filed on behalf of a former resident of a state-contracted, residential youth facility in Alabama either by a guardian or, in one case, the former resident himself. 
They all allege similar situations where a child with a disability was segregated from nondisabled children and not provided an equal quality of education.
"We have filed these lawsuits not only for our clients but for every child in the state who has been robbed of the education they deserve,” Florida attorney Caleb Cunningham said.
[…] After years of abuse allegations coming out against state-contracted mental health facilities in Alabama, the [U.S. Department of Justice] definitively found that Alabama discriminates against foster care children who have emotional and behavioral disabilities by denying them equal opportunity to basic education. 
Cavanaugh’s lawsuit and the others filed on behalf of minors utilize the DOJ report as support for their claims. 
[…]All six lawsuits are requesting that a judge finds that the defendants violated federal law and award compensatory damages, statutory damages, attorneys’ fees and costs. […]
• From WCNC (Charlotte, North Carolina): “'It's devastating': Gaston County mother says discriminatory discipline stands in the way of daughter's education”
GASTON COUNTY, N.C. — In a state where public schools rely heavily on suspending and expelling the most vulnerable children, Black students with disabilities miss out on more classroom learning than their peers, records show.
A WCNC Charlotte investigation previously found North Carolina suspends and expels students with disabilities at length more than every other state in the country, per capita. The data shows most of those kids are Black.
[…]"It's devastating. It's traumatizing. It's embarrassing. It's deflating," [

Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. What do you want people to know about the #medicalmom life?
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 Texas Tribune: “Texas parents who care for their disabled children full time will lose money after pay raise”
Inside an Austin high-rise north of the Texas Capitol in August, tearful parents lined up for a state health commission meeting to beg agency officials not to increase caretaking wages. It would backfire, they said. They would lose their livelihoods.
In a city where state officials typically hear pleas for more funding, this group of parents — many who serve as primary caretakers for their physically and mentally disabled adult children — pushed for the opposite. Some testified in groups, with their children sitting next to them as they spoke. Raising the wage by a small amount would take away their ability to log overtime hours without making up for the difference, and they knew better than most: caretaking was never a 9-to-5 job.
One parent who attended the meeting virtually broke down while sharing that she had to quit her job to start caring for her daughter, who was in a near-fatal car accident.
“You're only one accident away from my life,” the parent, who introduced herself as Jayne Moorman, told Texas Health and Human Services Commission officials through sobs.
Many of the group’s children depend on round-the-clock care paid for through a Medicaid waiver program known as Community Living Assistance and Support Services. This year’s state budget would slightly increase base caretaking wages, which advocates initially saw as a win after fighting to achieve it amid years of shortages, chaos and crises across the state’s Medicaid programs.
But it carried an unintentional consequence: shuffling funds took money away from the overtime hours that make up a big chunk of caretaker salaries. And in this program, most of the caretakers were family members who made their sole living through it.
[…]State Rep. Donna Howard, D-Austin, said that when she pushed for minimum wage increases in the Texas House this year, no one brought forward this potential consequence. She said she originally had pushed for a $15 base wage, but $10.60 was the legislators’ compromise. Howard formerly worked as a critical care nurse.
“You try to take a step forward, and it feels like you take at least another one or two steps backwards,” Howard said. “It was unintentional due to a lack of sufficient knowledge here on the part of legislators about how we need to address this. The service that these parents are providing is not only taking care of their family, but also reducing the overall cost of the state. And for us to not recognize that is dreadful. It's irresponsible.”
Howard added she thought someone, especially the state agencies involved, should have notified legislators that this might happen.[…]
• From NPR: “These kids used to get the bill for their own foster care. Now that's changing”
To Teresa Casados, who runs the department in charge of child welfare in New Mexico, it seemed like an odd question. At a legislative hearing in July, a lawmaker asked her if the state was taking the Social Security checks of kids in foster care — the checks intended for orphans and disabled children.
"My reaction really was: That can't be right," said Casados, who in the spring took over as acting secretary of New Mexico's Children, Youth & Families Department. "That can't be a practice that we're doing."
Casados and her chief legal counsel drove back to the office. "When we got back, we looked into it and found out it was a practice that the agency had for using those benefits — and had been going on for quite some time."
A 2021 investigation by NPR and The Marshal