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 did not return requests for comment on its admissions or enrollment practices.

E.R. and her family will miss out on many high school activities because she’s being homeschooled, but they have learned a valuable lesson on the importance of making sure kids with disabilities do not face more scrutiny than kids without them.

“Not only did it bother me about what they were doing to my kid, but how many other kids were they doing that to? It’s been going on for years and years. Nobody did anything about it,” she said. “No matter how hard it is. If you don’t stand up for your child, nobody else will. That’s the bottom line. Standing up for your disabled child is not an easy thing, but you have to do it. You may lose things but you’re also going to gain things.”

• From The Washington Post (Letters to the Editor): “Empower parents of children with disabilities”

One step forward and two steps back describe what Gov. Glenn Youngkin (R-Va.) has in mind for intellectually disabled Virginians. He committed to getting services, as covered by the developmental disability Medicaid waiver, to the most at-risk individuals. This is a big relief for the folks trying to get a waiver.

In January, he implemented new policies attempting to ensure that our children don’t live with the people who care for them. Yes, parents of the intellectually disabled can be paid between $12 and $17 per hour to take care of their children. This is care that often includes hygiene, feeding and transportation. The income, under the difficulty-of-care exemption, is not taxable. Now, Mr. Youngkin has brought on managed care agencies to hire the people who care for our individuals. There isn’t enough money to care for our folks, but there is enough to pay agencies? Apparently, Mr. Youngkin is making sure I don’t milk the clock by helping my 23-year-old daughter manage her hygiene.

Mr. Youngkin, do away with intrusive policies such as having agency staff come into our homes and decide who is going to care for our children. You talk about empowering parents. Please extend that dignity to the parents of those with intellectual disabilities.

Ann Masch, Markham

• From The New York Times: “Claudia Goldin’s Nobel-Winning Research Shows ‘Why Women Won’”

Claudia Goldin, who won the Nobel Prize in economics on [Oct. 9], has documented the journey of American women from, in her words, holding jobs to pursuing careers — working not just to support themselves, but because work is a fundamental aspect of their identity and satisfaction.

[…]Yet, her research demonstrates, women still lag behind men in various ways — in their pay, their work force participation and the share who reach the top of professions.

That’s no fault of their own, her recent work has shown. It’s because of the way work is structured. American jobs disproportionately reward long hours. The most glaring gender gaps would diminish, she has argued, if employees had more control over where and when their work got done.

[…J]ust as women who were children in the 1940s underestimated their career potential, the current cohort of working-age women may have overestimated it.

Men’s and women’s careers and pay are basically the same when they start working, but they change when children arrive. Her research shows a small dip in the share of women working in their late 30s and early 40s. Mothers are less likely than before to quit after their first baby, but slightly more likely to temporarily do so later, after “they try as hard as they can” not to, she has said.

[…]Closing these remaining gender gaps would require flexibility in where and when work gets done, her research explains. She has said in the past that such a change would require a fundamental remaking of the American workplace, “taking the whole thing down.” But more recently, she has expressed hope that the pandemic may have made that reality more feasible for white-collar workers.

“I suppose I am ever optimistic that this will lead to some reasonably good things,” she said.

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

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 smarter than us, as senators, in choosing the school that’s best for their child,” Creighton added.[…]

• From CalMatters: “Newsom’s veto lets California counties continue taking foster kids’ money”

Gov. Gavin Newsom has vetoed a bill preventing California counties from taking benefits, such as Social Security checks, from orphaned or disabled children in their custody, to pay for their foster care. 

The veto disappointed children’s advocates who have pushed for California to instead save those benefits for children to access when they’re adults. 

It also defies a nationwide trend. Increasingly, states led by Republicans and Democrats are stopping their child welfare agencies from the decades-old practice of essentially reimbursing themselves for providing foster care by cashing in certain children’s Social Security checks. 

Recently Arizona, New Mexico and Oregon have halted the practice, which came under increased scrutiny in 2021 after NPR and The Marshall Project published an investigation. This summer the federal government encouraged states to help children save their benefits instead, or find loved ones who could receive the payments on their behalf. 

[…]But in a veto letter issued Sunday, Newsom wrote that the measure to stop the practice, AB 1512, would have cost too much, in a year he and lawmakers have to close a more than $30 billion budget shortfall.

[…]“Governor Newsom let down thousands of hopeful, disabled and orphaned foster youth by vetoing AB 1512,” [Amy Harfeld, national policy director of the Children’s Advocacy Institute at the University of San Diego,] wrote. “Budget challenges or not, picking the pockets of California’s most vulnerable foster youth to fund their care is morally and fiscally indefensible.”

[…]The state contends child welfare agencies are spending the benefits appropriately — on the children’s care — just as if they were the children’s parents. 

[…State Assembly leader and bill author Isaac] Bryan, a former foster child, described the potential costs to the state as negligible. The entire state’s overall child welfare system costs nearly $5 billion a year. 

He said he will push for state money to be included in next year’s budget to halt the practice.[…]

• From Disability Scoop: “Feds Aim To Ease Shortage Of Special Educators”

[…]The U.S. Department of Education said it is awarding over $35 million to bolster the workforce of special education teachers and administrators, related services providers, those at early intervention programs and university faculty preparing these specialists.

A significant portion of the grants will be used for scholarships and other efforts to help students cover the cost of completing programs to prepare them for jobs serving children with disabilities, officials said.

[…]“Investing in the preparation and professional development of a strong, diverse workforce to serve children with disabilities is critical, not only to the well-being of individuals with disabilities, but to improve outcomes for all children,” said Glenna Wright-Gallo, assistant secretary for the Education Department’s Office of Special Education and Rehabilitative Services.

[…A]s of the start of this school year, data shows that 42 states and Washington, D.C. had a shortage of special educators.

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

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 structural level? What does that look like?" 

[…]Another important aspect of supporting parental mental health involves addressing the isolation so common among parents of disabled children. "Finding parent communities who deeply understand your situation can be validating and help you reconnect to your inner wisdom," Dr. Oswald says. "Talking with others who don’t get your parenting challenges and who give unsolicited advice or judge you can lead you to question your parenting and disconnect from your inner wisdom. Finding a supportive community can help you feel validated, appreciated, and inspired. Finding a community where you can express your worries and speak about those things that feel shameful can release you from the shame cycle."[…]

• From 10News (Tennessee): “TN expands system providing early intervention services for young children with disabilities”

Tennessee is expanding the services available for young children with disabilities to those who are an additional year old.

According to a release, the federal government approved the state to start offering eligible families the choice to continue receiving services from the Tennessee Early Intervention System until the start of the school year following their child's fifth birthday. It's the full age range allowed for early intervention services in Part C of the Individuals with Disabilities Education Act.

TEIS is voluntary and offers therapy, as well as other services, to infants and young children with developmental delays or disabilities. It's free to families and in the fiscal year 2023, it provided services to around 17,990 children.[…]

• From We Are Iowa: “Iowa promises services to kids with severe mental and behavioral needs after lawsuit cites failures”

Iowa’s health agency will take steps to develop home and community-based services for children with severe mental and behavioral needs as part of an initial agreement with civil rights groups that filed a class action lawsuit.

The lawsuit was filed in January on behalf of three children. It alleges that Iowa has for decades failed to meet its legal obligations to Medicaid-eligible children who should have access to individualized and coordinated care plans, in-home therapy and emergency services.

The complaint includes children who have been institutionalized for services that they were previously recommended to receive — and say they were entitled to receive, given the Medicaid Act — in their communities or homes.

"There was a desperate need to build a statewide children’s health system with an effective array of services," said Catherine Johnson, executive director of Disability Rights Iowa. “The complaint that we’ve filed alleges that these services are not available in anywhere in Iowa. They just don’t exist.”

[…]Johnson is optimistic about the work over the coming months, but she added that “time is of the essence” for these children and families.

“They would like to have these services — well, they would have liked them years ago,” she said. “There is certainly an urgency to providing these services.”

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

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 their federal counterparts this week to find out whether Oregon had indeed dumped children from Medicaid. 

State data shows that nearly 59,000 people have lost coverage since the state started the “redetermination” process, with people getting booted at the end of the month. A data dashboard that breaks those numbers down by demographics does not include information about those 19 or younger.

Heartquist said it was premature to say what the health authority would do if children had been wrongly disenrolled.

“We will not know this until we know if there is an affected population and how large it is,” she said in a statement. […]

• From the Big Issue (U.K.): “Councils wasting millions in taxpayer cash fighting families of disabled kids – and losing”

[…Regional governments in the United Kingdom] wasted £60 million in a year on unsuccessful court disputes with parents and carers seeking support for children and young people with special educational needs and disabilities.

The money spent in 2021-2022 would have funded 10,000 places in mainstream schools for children with additional needs.

[…]A massive 96% of cases were won by families.

These figures come just days after freedom of information requests from the Big Issue revealed that the government spends tens of millions each year fighting disabled and ill people who are appealing a benefits decision – only to have the majority of those overturned in favour of the claimant.

Even those who believe benefits are over-generous have to stop and think why taxpayers’ money is spent fighting losing battles.

It is both immoral and fiscally irresponsible to expect parents who have often given up work to support their disabled children and who might be providing 24-hour waking care, to go up against council-employed barristers to make their case.

[…]England’s most senior social worker, Dame Christine Lenehan, said this week: “If you had to design a [special education] system from scratch you would have to be on mind-altering drugs to come up with what we have now.” It can take years for a child’s diagnosis, once diagnosed parents are frequently left with a leaflet explaining the condition but no suggestion of where to find help. Traumatised parents are suddenly on a completely different path than the one they imagined.

[…]This is where parents deploy the language of the battlefield to describe their scrap for services. Everything is a fight. Parents already worn down by caring are expected to plead for everything that most non-disabled families take for granted – a decent school and teaching and support that allows them to flourish.

[…]Something has to give. Government has to take the needs of our children seriously, local authorities must be properly funded and their staff trained to make the best decisions for the people at the heart of this dysfunctional system – disabled children.

• From CNN: “Hundreds of young people with disabilities are learning at a new university founded by CNN Hero of the Year Jeison Aristizábal”

When Jeison Aristizábal became the CNN Hero of the Year in 2016 – the first from Latin America – he shared a powerful message for young people with disabilities and their families.

“I want to tell you that, yes, you can. You can dream and you can achieve your dreams,” he said.

Growing up with cerebral palsy in one of the poorest areas of Cali, Colombia, Aristizábal pushed himself to defy society’s expectations. He has dedicated his life to bringing therapy, education, and support to other young people with disabilities in his community so they can realize their potential.

[…]This year, he and his foundation realized yet another big dream: Building a university. Inspired by a group of older students from the program, the organization began construction two years ago.

“Today we have the first university for young people with disabilities in Latin America,” he said.

Now in its first year, with 300 students enrolled, the university offers a range of classes, including computer programming, 3D technology, graphic design, and languages. Students can also learn skills in culinary arts, carpentry, music, and tailoring.

“It has all the equipment so that people with disabilities can study in an accessible way,” Aristizábal said. “We have ocular technology, for example. Those who can’t move their hands or feet are operating computers with their eyes.”

Aristizábal says the focus is not only to help students attain their college education but to prepare them for employment so they can join the workforce, become providers in their families, and contribute to a variety of fields.

“The foundation is changing the concept of the word ‘disability,’ understanding that they can, that they’re capable,” he said.[…]

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

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," [mom Sharlene] Smith said of the challenges her 12-year-old daughter Sydney, diagnosed with autism and ADHD, has faced. "It's a very demeaning feeling."

[…]Records show Sydney faced 14 days of out-of-school suspension last school year. A required review concluded Sydney's disability caused her aggressive behavior. The school district, with support from Sydney's doctor, eventually sent her home for the rest of the year.

[…]Sydney's experience is representative of a larger problem. Kids with disabilities who look like her are disproportionately disciplined.

[…]The National Education Association has also made this a priority, noting years of systemic racism and unconscious bias. President Becky Pringle said the group is pushing for policies focused on restorative practices that, instead of penalizing students, aim to address the root cause of their misbehavior.

[…]"I'm literally every single solitary day in a fight for her life," Smith said. "When she does this, even at 15 and she does this at Carowinds [Amusement Park], you're going to lock her up. That's what happens to our kids."[…]

• From Mondaq (France): “France: Paid Bereavement Leave Extended, Among Other Changes”

[A] New law in France strengthens job-protected parental leave and expands paid leave to care for a child with a serious health condition or for bereavement purposes.

[…]If a child is diagnosed with a chronic disease or becomes disabled, parents are entitled to five workdays of employer-paid leave (previously two workdays) when the diagnosis or determination of disability occurs.

[…]On request, parents of sick or disabled dependent children are entitled to request to work remotely. Employers may only refuse such requests (in writing) based on objective business reasons.

[…]In the event individuals are entitled to state-paid family allowances in relation to caring for a sick or disabled child (l'allocation journalière de présence parentale), the allowances may now be payable before the state medical assessment is finalized.[…]

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

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 Marshall Project found this practice was the rule across the country. The investigation led to calls for reform. Now, 15 states and cities have taken steps to preserve the money of foster youth. Several other state legislatures are considering similar laws.

And last month, the U.S. Department of Health and Human Services and the Social Security Administration sent a letter to state and local child welfare agencies to encourage these changes.

The NPR/Marshall Project investigation found that in at least 49 states and the District of Columbia,when young people go into foster care child, welfare agencies routinely look for which ones come with Social Security checks. Or, if the children are eligible, agencies sign them up for benefits. Then state agencies cash those checks — usually without telling the child or their family, the investigation found.

States claim the money as reimbursement for the costs of foster care. But governments already have an obligation to pay the costs of foster care under state and federal laws. The result is that only impoverished kids, who receive Social Security benefits because they're orphans or because they're disabled or their parents are disabled, get a bill for their own foster care.

[…]Some child welfare advocates say the letter from Washington is a good first step, but they're disappointed that it didn't do more.

"The administration missed a leadership opportunity," says Amy Harfeld of the Children's Advocacy Institute, "to clarify once and for all that it is never in a child's best interest for their money and assets to be used by a public agency without their notice for the agency's own gain."

Harfeld says change is coming "from across the political spectrum," most recently in Arizona, Oregon and New Mexico, and in major cities, including New York, Philadelphia and Washington, D.C.[…]

• From the U.S. Department of Education (press release): “U.S. Department of Education Awards Nearly $199 Million to Improve Career Opportunities for Students with Disabilities Through Partnerships”

The U.S. Department of Education’s Rehabilitation Services Administration (RSA) announced today it will fund 20 model demonstration projects focused on improving economic self-sufficiency for children and youth with disabilities by creating systemic approaches to enhance post-school outcomes.

The nearly $199 million in funding for the Pathways to Partnerships innovative model demonstration project supports collaborative partnerships between state vocational rehabilitation agencies, state and local educational agencies, and federally funded centers for independent living to help individuals with disabilities seamlessly transition to life after high school, preparing them for independent living, competitive integrated employment and community integration. Pathways to Partnerships is the largest discretionary grant ever administered by RSA.

[The five-year grants will go to 20 different states — ranging from Colorado’s $14 million grant to Maine’s $7 million one. None of the West Coast states were selected.]

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

Three months… or maybe five years! I remember when my kids got into kindergarten and I thought I would get a break. Boy, was I wrong! As you may remember from this episode, in-person school is not a good fit for my kids and I’m still their school support staff for online school. But I’m sending fervent wishes for all of you parents who can send your kids off that your child’s school days are safe, healthy, and RELIABLE breaks from care!

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.

It’s been an exciting week! Oregon Public Broadcasting’s Dave Miller interviewed me on Tuesday about the NPR story I co-reported on Medicaid dollars in schools. Oregon residents in particular may want to take listen as we zeroed in on some of the changes their new state plan amendment makes possible. You can listen to the Think Out Loud episode here: Medicaid makes changes to make it easier for schools to bill for services to students with disabilities

I’ve heard it is already making the rounds in both school and nursing circles — and parents are using the information to advocate for better services. Check it out to learn more about how Medicaid wants to make it easier for schools to get reimbursed for all sorts of healthcare delivered in school.

Also this week:

If you’re a Pacific Northwest resident or planning a trip here soon, check out my itinerary for an accessible tour of the Central Oregon Coast on Travel Oregon. For three days you and your kiddos could check out the massive dunescape on an accessible buggy, get hands-on with some sea creatures at the Charleston Marine Life Center or tuck in to some grub at The Boat Fish & Chips — a real boat turned into a restaurant! The article is completely packed with more options than you probably even want to do in a single journey — but showcases how much the travel industry is changing to be accommodating and inclusive, even in rugged rural areas. (Special thanks to my dad and erstwhile travel writer step-mom who lived in that area and helped me verify the options!)

If you’re more of a spatial or visual person, be sure to check the itinerary’s Google map for all the spots that we featured. If you end up at any of those attractions, drop me a line! I’d love to see where your travels take you.

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 Des Moines Register (Iowa): “Shortage of youth mental health services in Iowa reaches crisis; families are in despair”

In Iowa and across the country, demand for programs and services for some children with mental, behavioral and intellectual disabilities has reached a crisis point, triggering a high-stakes lawsuit against the state and pleas by advocacy groups and providers for action.

Almost three years after the isolation and anxiety of the COVID-19 pandemic began to exacerbate mental health issues for children, wait lists for psychiatric medical institutions for youth, also called PMICs, have reached new highs.

Worker shortages have hamstrung care providers, and some programs are shuttering for lack of financial support. Providers say children have become more suicidal and violent, placing additional pressure on their programs and their employees.

"Definitely we are seeing a level of higher acuity post-pandemic … unlike any of us have seen in our careers," Kelly Garcia, director of Iowa's Department of Health and Human Services, told Watchdog. "This is something we're struggling with as a nation."

Programming also is missing for children placed in the state's care after being removed from their homes because of alleged neglect or abuse. Congress took dramatic steps in 2018 with passage of the Families First Preservation Services Actto shift federal child welfare money away from long-term congregate care settings for kids.

[…]From the state's 2019 fiscal year through its 2023 fiscal year, the number of group home beds for youth in the child welfare system tumbled by nearly half, to 357 from over 660. Shelter beds dropped by 55% and now number just 107 statewide, according to data obtained under Iowa’s open records law from Iowa's DHHS.

The number of licensed foster care homes available to temporarily house abused and neglected children across the state also hit a low point, dropping 20% since 2019 to 1,635.

[…Jane Day, a Des Moines mother, says she needs more help for her daughter.]

“She’s going to kill herself or be killed. That’s my constant fear,” Day said. “It’s been exhausting. Mentally and physically exhausting. I function at work, but our home life is completely chaotic. The worrying ― and just trying to make sure she gets what she needs ― is constant.”

Her daughter, who asked not to be identified because of her mental health struggles, said she experienced a constant lack of available programs while growing up, a situation made worse by the way people judge young people with depression, anxiousness, a desire to isolate and other challenges.

"It feels like people just want to push us away," she said. "It feels like they don’t understand what we go through. When we try to get the help we need, we can’t get the help we need. It’s more like people don’t care."

• From ABC 7 (New York): “Mom saves fussy baby's life after taking child to 3rd hospital despite 2 others insisting all was OK”

The mother of a 5-month-old girl knew something was wrong with her baby despite what some doctors were telling her.

Faustina Cavero said she could see the glow was gone from her baby girl's face.

"I'm like 'Oh my god.' I know something is wrong with my baby, her eyes are rolling back,'" Cavero said.

Out of nowhere, Faustina says her 5-month-old daughter Aaliyah's face turned pale serious and then she began to spasm.

"She was just crying and fussy, and I'm like 'Mom she's making these moves, but I don't know what's wrong with her,'" Cavero said.

The mother of four had never seen something like this, so she took her to a hospital where she says she was quickly dismissed.

"They had told me I was under stress because I didn't get no sleep," Cavero said.

So she got a second opinion.

"I told them I took her to this hospital and they told me I was under stress," Cavero said.

Discouraged and scared, Faustina took Aaliyah home, but the spasms didn't stop.

Faustina trusted her gut and decided to seek a third opinion at Mount Sinai on Manhattan's Upper East Side.

"when I went in there, showed her the video, and that's when she said she's getting admitted," Cavero said.

Aaliyah was admitted on that day, and a team of doctors quickly got to work.

[…]Aaliyah was treated for infantile spasms and continues to receive care and monitoring at Mount Sinai.

Fast forward about a year and a half later and Aaliyah is thriving and will soon celebrate her second birthday.

A grateful Faustina hopes her story serves as a message and a warning for every parent.

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

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.

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

I had a long commute in high school. Since she worked near my school, my mom would drive me the 30 or so minutes every morning, but I would have to take a 2-hour bus ride home. We could never agree on the music. She wanted to listen to Oldies or Classic Rock, but I wanted to listen to Alternative or Pop.

There was one thing we finally agreed on: National Public Radio.

I had known I wanted to be a writer since the age of 6. But after a couple of years of listening to NPR with my mom on my way to school, that was when I decided to be a journalist.

So it is with great pleasure and absolutely no attempt at playing it cool that I announce that I officially have a byline on NPR!!! I only wish my mom were still alive to see it.

I even recorded two radio thingies — one was a 50-second spot that people have told me actually played on Oregon Public Broadcasting, but I have yet to hear. The other was a 3-minute interview with Leila Fadel for the Up First podcast, but that unfortunately got bumped for breaking news.

This story and its reach would not have been possible without my friend and Medical Motherhood subscriber Emily Harris. (For those who aren’t huge public radio nerds like me, she is kind of a big deal! Now at Axios Portland, Emily hosted Think Out Loud on OPB for several years, then covered the Middle East for NPR and until recently reported in-depth pieces for Reveal.) She recognizes all of the underreported stories in this medical motherhood space and has been a huge supporter of getting them out in the world.

And that has truly been the best part about this NPR story: seeing and hearing how much it has resonated with the audience.

It was not an easy story to report. Much like the Special Needs World web of bureaucracy that ensnares parents of disabled children, even basic questions took an exceedingly long time and several rounds of back and forth to answer. Several reporting routes were simply dead ends. But, in the end — and with the able help of NPR Editor Nicole Cohen, and our patient sources — we managed to put together a report that shows the logistics, emotion and complexity in offering Medicaid funding for school-based services.

Still haven’t read it? You are in luck! NPR is giving me special permission to read the entire web story for my podcast listeners. Just scroll up and push play.

If you prefer a written version, head to this link:

Schools could be getting millions more from Medicaid. Why aren't they?

I also highly recommend listening to Emily’s 7-minute story. Just click the blue play button above the adorable picture of medical mama Jenny Eckart Hoyt and her daughter Winnie. You can also read her more Oregon-centric version on Axios.

I plan to continue expanding on this coverage. If you like that idea, your subscriptions allow me to prioritize that work.

The U.S. Department of Education is proposing a controversial idea to skip the parental consent requirement for Medicaid services in schools. Proponents say it will streamline the process and get kids access without additional paperwork for busy parents. But others worry it’s a way for the government to overstep in a child’s health decisions. In any event, it is already a hot controversy in the special education space. Follow along by subscribing to Medical Motherhood and asking your friends to subscribe as well:

Medical Motherhood’s news round up

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

• From Spectrum News (New York): “Two-thirds of schools are not fully accessible to those with physical disabilities, report finds”

[…]A new report from Advocates for Children found that two-thirds of the city’s public schools are not fully accessible to people with physical disabilities.

There are more than 1,400 school buildings in [New York City], some of them housing multiple schools.

This school year:

• Only 34% of those school buildings are fully accessible

• Nearly 20% are partially accessible

• Almost 5% are not fully accessible, but are in the pipeline for improvements

• And 41% of buildings are fully or functionally inaccessible.

AFC uses the term functionally inaccessible for buildings a wheelchair user may be able to enter, but which doesn’t offer any classrooms on the first floor, meaning they’re not an educational option for those students.

A partially accessible school has classrooms a child can access, but they may be cut off from huge parts of the building.

“You might be able to get in the door, but there might be whole areas of the building that are totally off limits. So you can’t get into the science lab. You can’t take that class or you can’t participate in certain clubs. You aren’t a full member of the school community,” [Sarah Part, senior policy analyst at Advocates for Children,] said.

While the numbers are stark, they represent an improvement from 2018 — when AFC found just 19.5% of schools fully accessible. That, along with a 2015 investigation from then-U.S. Attorney Preet Bharara, spurred the city to invest $750 million in its capital plan to make improvements. […]

• From Home Health Care News: “Home-Based Care Providers Break Down ‘Unintended Consequences’ Of CMS’ Proposed Medicaid Rule”

A proposed rule from the U.S. Centers for Medicare & Medicaid Services (CMS) – which would require at least 80% of Medicaid reimbursement for home- and community-based services go toward worker compensation – received over 2,100 submissions during its public comment period.

Many of the comments included gratitude and appreciation for CMS regarding its efforts to enhance the HCBS workforce. But concerns persist over how the rule would affect HCBS providers across the country.

[…]Like many of his colleagues across the industry, [Addus HomeCare Corporation Executive Vice President Darby] Anderson wrote and reiterated what others have told Home Health Care News when the proposed rule came out: that implementing a standard minimum percentage threshold without studying the potential impacts of the 80% rule will likely result in unintended consequences.

Those consequences could include smaller providers going out of business and larger providers leaving certain markets, thus reducing access to care.

[…]More clarity on what CMS ultimately plans to do should come in the third or fourth quarter of this year.

• From The Oklahoma City Sentinel: “Accessible Smart Home technology available for Oklahomans with disabilities”

OKLAHOMA CITY — Oklahoma Human Services, in collaboration with ABLE Techand Bethany Children’s Health Center, have opened two Smart Home demonstration sites to showcase remote support and enabling technologies for families on the Developmental Disabilities Services (DDS) waitlist, as well as families already on DDS waiver services.

A Smart home allows individuals to control appliances, thermostats, lights, and other devices remotely using a smartphone or tablet connected to the internet.

[…]The home also features assistive technologies, such as wheelchair ramps, a roll-in shower and widened doorways to increase accessibility and safety.

[…]The Smart Home features enabling technologies designed for remotely controlling appliances, dispensing medications and detecting seizures, the result being increased safety and convenience for the user. From video doorbells to induction stovetops and grab bars, these technologies empower individuals with disabilities to navigate their daily routines with greater confidence.

In addition, the Smart Home offers remote support options, as well, highlighting how the increased independence afforded by these technologies allows for individuals to be supported by off-site staff rather than in-home care. […]

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

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. 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?

Psst. I’m very excited for Morning Edition this Thursday on NPR, as well as their Up First podcast. I can’t reveal too much yet, but there will be links in the next edition of Medical Motherhood! Be sure to tune in if you want to hear the results of this long-time-coming investigation.

Also, a couple of weeks ago, I told you that my feature in PDX Parent was out in the August edition of the magazine. You can now read the full piece online at this link. I’ve gotten a lot of positive feedback on the piece and hope it has impact as we move into the new school year. The second part in the series will be out in November and will focus on legislative changes in Oregon.

Medical Motherhood’s news round up

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

• From Arizona’s Family (News): “Arizona parents of disabled children ask for changes in proposed caregiver program”

In 2020, Arizona allowed parents of children enrolled Department of Developmental Disability (DDD) and Arizona Long Term Care System (ALTCS) to be certified and trained direct care workers (DCW) for their children.

The program, Caregiver Benefits for Parents, reimburses parents for providing care to help with the current shortage of providers. Currently, it’s set to end in September. However, the Arizona Health Care Cost Containment System (AHCCCS) has proposed to keep the program permanent but with some changes [such as a 40-hour work week].

[…Arizona mom Brandi] Coon said she’s learned a lot about what her son’s needs are. So when AHCCCS introduced this program, she knew her son would always be in good hands. “We’re really able to customize what that child needs and know that child the best to facilitate their care and their daily needs and daily activities of living,” Coon said.

Right now, 16,880 total children are living at home and receiving home and community-based services [in Arizona]. Of those, 3,469 are being served by parents as paid caregivers.[…]

• From Oregon Public Broadcasting: “Centralia School District sued after kindergartner was repeatedly isolated”

For a kindergartner with autism in Centralia, [Wash.,] a padded isolation room became a regular sight. Teachers locked him there, sometimes for nearly an hour, when they felt he disrupted class.

But school staff allegedly failed for months to tell his mother that they had been stowing him away while he was at school, according to a new complaint filed in Lewis County Superior Court.

Ashlee Fitch said she found out by accident.

[…]Fitch didn’t receive any information for months, the complaint alleges. The district reportedly mailed paperwork to an outdated address — an address that Fitch had corrected to the district on three separate occasions.

The complaint also noted that teachers had multiple in-person conversations with Fitch and never discussed restraining or isolating her son. On Dec. 10, for example, she met with the district to discuss his individualized education plan and yet “had absolutely no idea G.F. was being restrained or isolated at school.”

[…]When a staffer made an off-handed remark on Jan. 24 about Fitch’s son and the isolation room, she was “shocked and confused.”

“When she inquired for more information, she was finally informed that the district had been locking G.F. in the isolation room almost daily for the last couple months,” the complaint said.

Fitch then wrote to school officials that she was “pissed.”

“This is ABSOLUTELY RIDICULOUS to not give a 5-year-old recess and lock him up like a crazy person in a psych ward,” Fitch wrote in an email.

School staff continued to put Fitch’s son in the isolation room the next month. The practices continued when they moved to another school in the district.

In August 2022, the district transferred Fitch’s son to a school specialized for children with behavioral issues. The complaint reported that he has not had an issue since.

Dr. Lion Enns, a behavioral health specialist based in Bellevue, wrote in a report that G.F. underwent “immeasurable harm” from his treatment while attending Centralia School District. He diagnosed Fitch with post-traumatic stress disorder, attention-deficit/hyperactivity disorder and autism.[…]

• From USA Today: “Sex ed for people with disabilities is almost non-existent. Here's why that needs to change.”

[…]As sex education loses funding and becomes more restricted in scope and access, individuals with disabilities are often left out of even the most basic programs. Only five states mandate inclusive sex education for people with disabilities, and two of those are optional, while 36 states don't mention sex education for special needs at all. This lack of inclusion leaves individuals with disabilities to rely on parents and media for information, which is often incomplete, inaccurate or absent altogether.

[…]Here are the biggest things to understand:

• People with disabilities are just like the rest of us when it comes to sex: Most people with disabilities are not asexual nor are they hypersexual with uncontrollable urges. Limiting their experiences minimizes their potential for self-exploration and sexual wellbeing.

• Consent is as important as ever: Disempowering individuals with disabilities to assert their needs and desires makes them vulnerable to sexual assault and unhealthy relationships.

• For many, infantilization never ends: Guardians and support networks often treat people with disabilities as perpetual children, avoiding discussions about sex and relationships. This leaves them without a safe space to learn and explore their sexuality.

[…]These barriers to sexuality have serious consequences. Children with disabilities are four times more likely to experience sexual assault than their peers, increasing to seven times more likely as adults.  Between 40% to 70% of girls with disabilities and up to 30% of boys experience sexual assault before the age of 18.  Women with disabilities are more than twice as likely to contract sexually transmitted diseases than their peers. Loneliness and mental distress are much more prevalent among adults with disabilities due to social isolation and stigma around dating and relationships.

[…]Promoting sexual equality for people with disabilities is essential for their overall wellbeing and happiness. By breaking down barriers and having open conversations, we can create a more inclusive and supportive society for everyone.

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