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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.
Get full access to Medical Motherhood at www.medicalmotherhood.com/subscribe -
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.
Get full access to Medical Motherhood at www.medicalmotherhood.com/subscribe -
Saknas det avsnitt?
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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.
Get full access to Medical Motherhood at www.medicalmotherhood.com/subscribe -
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.
Get full access to Medical Motherhood at www.medicalmotherhood.com/subscribe -
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!
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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.
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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.
Get full access to Medical Motherhood at www.medicalmotherhood.com/subscribe -
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.
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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.
Get full access to Medical Motherhood at www.medicalmotherhood.com/subscribe -
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!
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Whew, it has been a long dry spell since you’ve been able to see my freelance work, dear readers. That doesn’t mean I haven’t been working on stories for months, but somehow everything is coming out in August!
PDX Parent has published the first part of a two-part series on the State of Special Education in Portland. Right now you can read the whole piece on pages 14-17 of the digital version of their print edition. A link to the web story is coming soon.
EDIT (8/19/23): Here it is! https://pdxparent.com/unmet-needs-the-state-of-special-education-in-portland/
Here’s an excerpt:
At first, Neil Haigh was not that alarmed. This was early January and the Southwest Portland dad had gotten a call from school that his daughter Mattea’s feeding tube had come out, so could he please come fix it?
Mattea, a 10-year-old with blue eyes and golden hair, is nonspeaking and needs a range of medical supports, such as her gastronomy tube or “g-tube” that attaches like an earring in the wall of her stomach to provide her nutrition.
Haigh replaced the g-tube, and suggested that the Markham Elementary School staff receive additional training. But a staffer tipped him off that it wasn’t necessarily an adult who was responsible for the g-tube situation and when he got Mattea home, he noticed bruising on her arms.
“It felt like a bit of a cover-up and that’s when I got more involved,” Haigh says.
After weeks and hiring a legal team, the family finally got a copy of the incident report.
“[A student, name redacted] pulled out another student's ‘mickey button’ which is part of their feeding apparatus,” reads the report. “The button was under the student's clothing. Removing this button in this way takes significant force and it is painful to have it ripped out of the stomach.”
Mattea’s parents were shocked. Haigh started organizing with other classroom parents and discovered that the incident was just the “tip of the iceberg.” Kids were getting hurt, other parents alleged. Even worse, the classroom was struggling with a two-year-long string of teachers and support staff who had quit or left without returning, often citing a lack of support and safety.
“What happened to Mattea was awful, but it was a result of years and years of malpractice,” Haigh says. “We have no beef with (the child who removed Mattea’s g-tube). That kiddo is just a kiddo who has a lot of needs and wasn’t being adequately supported.”
There are 6,916 different experiences of special education in Oregon’s largest school district because, at last count, there are 6,916 special education students in Portland Public Schools (PPS). Guided by Individual Education Programs or IEPs — a team-designed plan for each disabled student’s particular needs — special education can be as simple as providing extra time to finish a test or as challenging as providing a one-to-one adult who can constantly, consistently, and instantly set expectations, react to changing conditions and buffer explosive behavior.
By some metrics, PPS’ special education department is doing well. The vast majority of special education students are integrated into the general education environment at least 40% of the time, with 81.3% integrated 80% or more of their day. The graduation rate for special education students sits at 82.4%, which is higher than the state target.
“PPS can stand up and be proud that that's true,” says PPS Student Support Services Chief Jey Buno, of these statistics. “Because that's not the same case everywhere else.”
Nevertheless, many people PDX Parent talked to for this series described a crisis in the district: safety risks to children and staff, overwhelming caseloads and a lack of action at the top. […]
Read the full story for free at PDXParent.com: Unmet Needs: The State of Special Ed in Portland Pages 14-17
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Psychology Today: “Supermoms of Children With Disabilities”
[…]Since [her son’s autism] diagnosis, Cara’s days had been consumed with doctors, therapists and school authorities in charge of educational supports for Ray. Not surprisingly, she looked exhausted. “It’s a war,” she said grimly. “It’s a battle to get Ray the services he needs.”
I left the conversation with a sense of unease and anxiety about Cara and other mothers like her. After all, wars always incur costs, not only in dollars and cents but in human suffering and loss. I worry about the costs of the struggles Cara is going through, not only to her but also to her family, community and society at large.
We need to envision and create a system in which the care and support of persons with disabilities do not pit families against the bureaucracies and institutions that are supposed to be helping them.
The parents of children with ASD have exceptionally high levels of stress and mental and physical health issues. The work of advocacy, of negotiating for appropriate care and services for children, is a focal point of pressure. Along with the daily tasks of life, of making sure the rent is paid and food is on the table, the parents of children with disabilities are in a battle of advocacy—of navigating a dense and maze-like set of medical and educational institutions in order to access and coordinate appropriate services for their child.
[…]The Supermom/Good Advocate Mother is a myth that can inspire and empower mothers who are negotiating services for their child. At the same time, the myth fosters unrealistic expectations. If mothers in general are susceptible to guilt, the mothers of children with disabilities are especially prone to feeling like they are not advocating effectively enough for their child and that they are not measuring up to the ideal. The myth also sets the groundwork for blaming mothers for the unsatisfying progress of their child.
[…]The families of children with disabilities have played and continue to play a critical role in disability rights movements and initiatives. Their contributions include the development of such organizations as Special Education Parent Advisory Councils (SEPAC) and Parent Training and Information Centers that are charged with helping the families of children with special needs. These are important sources of support.
Still, when I think of Cara, I know there is more that needs to be done to support mothers like her.
Bottom line, parenting a child with disabilities shouldn’t feel like a war.
• From WTOP News (Virginia): “Va. families file complaint with AG alleging disabled students’ rights were violated”
Families of children with disabilities have filed a complaint with the Virginia attorney general’s office, calling for an investigation into state education authorities and the Fairfax County School Board for allegedly violating the rights of students with disabilities.
In the complaint filed last week, the families say the Virginia Department of Education “oversees a systemically defective educational system” that is “designed to obstruct, delay and ultimately prevent families with disabled children from receiving and vindicating their educational rights.”
[…]Trevor Chaplick, one of the parents who filed the lawsuit, said [Virginia Attorney General Jason] Miyares’ office should investigate “these many violations of students rights over the years, including the hearing officer system, in which the statistics that we’ve broken through a FOIA investigation are just scandalous. We’re just two families trying to correct and reform the system.”
The complaint filed with Miyares’ office asks the attorney general to investigate the school system under the Virginia Human Right Act [….]
[…A]ccording to the complaint, in Northern Virginia, over 80% of hearing officers have never ruled in favor of a disabled child in the last decade. Chaplick calls the discrepancy a scandal and violation of disabled [students’] parents’ civil and federal rights.
Parents, Chaplick said, “have no idea that they’re wasting their money on lawyers and experts that statistically, they have no chance, that the parent prevailing rate is less than 2% in Virginia.”[…]
The U.S. Department of Education has separately initiated several investigations into whether Virginia school systems have complied with the IDEA, and in June, Virginia’s compliance level changed from “Meets Requirements” to “Needs Assistance.” That’s expected to result in more oversight from the federal agency.
A Virginia Department of Education spokesman didn’t respond to a message seeking comment on the complaint. […]
• From Disability Scoop: “Feds Extend Lifeline To Disability Service Providers”
Federal Medicaid officials say they will extend some flexibilities for home and community-based services that emerged during the pandemic in a bid to help the beleaguered disability services sector stay afloat.
In guidance issued this week, the Centers for Medicare and Medicaid Services said that states can continue relying on changes that were adopted during the COVID-19 pandemic while they work to officially incorporate them into their waiver programs.
[...]Previously, states were told that flexibilities provided under what’s known as Appendix K would expire by Nov. 11, six months after the end of the public health emergency. Now, however, CMS says that states can act to extend that deadline.
[…]States have used regulatory flexibilities offered during the pandemic to allow family members to be paid as caregivers, to introduce remote supports and to alter services and reimbursement to address staffing issues, among other things, advocates said.
The extra wiggle room in extending these changes has been long sought by disability service providers who have struggled mightily to attract and retain direct support professionals, among other challenges, in recent years. A survey last fall found that 66% of providers were concerned that vacancy and turnover rates would increase once regulatory flexibilities and COVID-19 relief funding come to an end.
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!
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• From the Miami Herald: “In blistering order, judge tells Florida to stop blocking effort to aid medically frail kids”
The battle of wills between Florida health administrators and a federal court judge intensified Tuesday as U.S. District Judge Donald M. Middlebrooks accused the state of obstructing his efforts to free medically fragile children from segregated institutions, where many have spent their entire lives.
Late last week, the Florida Agency for Health Care Administration asked Middlebrooks to stay an injunction he signed a week earlier requiring the state to reform its system of care for 2,750 children with medical complexities. The linchpin of Middlebrooks’ plan is a requirement that the state ensure such children receive at least 90% of the at-home nursing care prescribed by their doctors.
The injunction capped a two-week trial in May — and a 12-year litigation Middlebrooks repeatedly has castigated as shameful — over claims by the U.S. Justice Department that Florida is violating the Americans with Disabilities Act by steering severely disabled children into nursing homes. Virtually all of the youngsters, Middlebrooks wrote, could be safely cared for at home with sufficient help from the state.[…]
But Florida health regulators instead have left families with little choice but to leave their children in institutions by making it extremely difficult for parents to access adequate private-duty nursing, Middlebrooks wrote.
A total of 2,750 children in Florida require constant nursing care, Middlebrooks wrote, and parents have complained bitterly for years that low reimbursement rates under Medicaid, the state’s insurer of last resort for impoverished and disabled Floridians, have made in-home care difficult to access.
[…Florida health agency] lawyers said it would be “impossible” for the state to comply with Middlebrooks’ injunction. And doing so, the state said, would force health administrators to redirect scarce health dollars from other deserving groups.
“Beyond the shadow of a doubt, the state will violate the injunction through no fault of its own, and despite its best efforts, because the provision of 90% of [private-duty nursing] hours to 2,750 children in the midst of a nursing shortage is simply impossible.” the state argued.
[…]“These children deserve better, as do those whose taxes are already paying for these services,” Middlebrooks wrote of the medically complex children at the center of the current litigation. “I caution the state against foot-dragging in complying with the injunction. This issue is too important. And for the families involved, the stakes are too high.”
As to the argument that it lacks money to provide 90% of the nursing care doctors order, Middlebrooks reminded the state that it is already paying its managed-care organizations to deliver 100% of what doctors prescribe — a contractual requirement the state has never enforced. […]
• From Disability Scoop: “Ed Department Tells States To Step Up IDEA Compliance”
Citing a pattern of failures, federal education officials are issuing new guidance pressuring states to improve their oversight of special education programs.
The 45-page document released this week by the U.S. Department of Education outlines steps that states should take to enhance their monitoring of IDEA and ensure compliance in school districts and early intervention programs.
Specifically, it indicates that states should monitor every school district and early intervention program at least once every six years and states “may not ignore credible allegations about potential noncompliance” even if they come outside of the regular visit cycle. In cases where a program is not compliant, states must issue such a finding in a timely manner, generally within three months, and they must ensure that the issue is corrected for each individual child, the guidance states.
[…]The Education Department said that it issued the guidance in response to “multiple requests from a diverse group of stakeholders for updated and consolidated guidance interpreting the general supervision requirements of states” under IDEA.
The information comes less than a month after the Education Department released its annual IDEA determination letters. The federal agency is required to evaluate each state’s performance under the law annually. For the 2021-2022 school year, just 22 states met requirements for providing special education to students with disabilities ages 3 to 21.[…]
• From The Texas Tribune: ““Scared out of my mind”: A family scrambles after their disabled 3-year-old loses Medicaid”
“Parents of medically complex children can’t afford for emotion to take over,” [mom Jodi] Whites, of New Braunfels, said. “You get into the parking lot of the ER, you wipe your tears, you get your kid and you go. You can have your breakdowns once the doctors have seen them.”
But her daughter Amelia can’t see her doctors anymore. She can’t undergo scheduled brain tests because the Medicaid coverage that provided access to all her treatment — for her six congenital heart defects, her cerebral palsy and her autism — was revoked.
Amelia is one of half a million Texans booted from Medicaid — the federal health insurance program for low-income individuals — after three years of continuous coverage during the pandemic, when federal regulations prohibited moving anyone off of the rolls. Around 5 million Texans rely on Medicaid, which mainly provides health coverage for children, but some adults with disabilities and pregnant women can also receive benefits from it.
The state intended to remove people who are now ineligible, including children who turned 18, aging them out of qualifying, and women months out of their pregnancies. But many eligible Texans have also lost coverage for reasons including procedural errors like not sending in renewal applications on time, jeopardizing their ability to access consistent care.
But according to a letter addressed this week to the executive commissioner of the state agency that manages Medicaid for Texans, the Texas Health and Human Services Commission, approximately 80,000 eligible people have “lost coverage erroneously.” The letter, obtained by The Texas Tribune, was written by HHSC employees who did not name themselves, signing off only as “Concerned Texans and Dedicated Employees.”
[…]Jodi Whites said she had believed Amelia’s coverage would continue. She said she didn’t receive any communication from the state that her renewal application was denied until two weeks before she lost coverage.
“As soon as I saw that denial, I could not breathe. I could not think. I was scared out of my mind,” she said, “because I know what a loss of coverage for Amelia means.”
[…]Medicaid covered more than [nursing] services for Amelia. It also provided regular supplies for her gastrostomy tube and oxygen, which she needed when she couldn’t breathe. A company working with Medicaid removed the supplies for providing oxygen on Thursday from the Whites’ home.
For her gastrostomy tube, Amelia needs access to syringes, special pump bags and formula. Whites paid out of pocket for a set of syringes once, but it was too expensive, and since then she’s been outsourcing to Facebook to reach families of children with similar needs. Some parents from other states have shipped her their leftover supplies. Others have asked her to pick them up, leading Whites to drive hours to different parts of the state to keep Amelia going.
“We learn to take care of one another as medically complex parents because we can’t always depend on the state for services,” Whites said. “We take care of each other and our kids.”
[…]Amelia qualifies for a Medicaid waiver program that guarantees coverage, but she’s one of 6,012 people on a waiting list, her mother said.
[…]State Rep. John Bucy III, an Austin Democrat on the House Select Committee on Health Care Reform, said his office has heard the “unwinding” has not gone well for many bureaucratic reasons that should be fixable. He said the systems used to manage Medicaid eligibility should be modernized.
“There’s no other way to say it: We’re in a crisis,” Bucy said. “This is terrible for Texans. But we’re coming back and this should not wait for the next session for the Legislature to act. This has to be dealt with now.” […]
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!
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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. What do you want people to know about the #medicalmom life?
I’m running low on submissions, so if you send a picture it just might get featured! Remember: no kids’ faces. Focus on their equipment, your hands doing procedures or even your face!
Medical Motherhood’s news round up
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• From CBS News: “Nearly 1 in 10 U.S. children have been diagnosed with a developmental disability, CDC reports”
The share of American children who have ever been diagnosed with a developmental disability increased again in 2021, according to a new report from the Centers for Disease Control and Prevention, and now more than 1 in 10 boys have had an intellectual disability, autism spectrum disorder or another developmental delay.
Among kids ages 3 to 17 years old, 8.56% have ever been diagnosed with any developmental disability as of 2021, according to the latest results from the agency's ongoing National Health Interview Survey.
"We're interested in understanding the prevalence of these conditions in the population so that we can make sure we have adequate services available for families and children who need them," said Benjamin Zablotsky, a statistician for the CDC's National Center for Health Statistics and lead author of the new report.
[…]From 2019 to 2021, rates of intellectual disability or autism spectrum disorder did not increase by a statistically significant amount. The report found 1.65% of children had an intellectual disability and 3.05% had autism.
The only category that increased significantly was parents reporting having been told their child had an "other developmental delay" — a grouping that can include a range of other issues, like cerebral palsy or struggles forming words. That group increased from 5.08% of kids in 2019 to 6.06% in 2021.
"A lot of times developmental delays might be temporary diagnoses that evolve into something like autism, potentially, or intellectual disability. But also a lot of times children do age out of those," said Zablotsky.
Previous questions focusing on the specific prevalence of some less common conditions, like cerebral palsy, have been dropped from the survey effort.
"When we are deciding what questions to include in the survey, if you don't get enough of a sample back, meaning the prevalence is pretty low, you can't then look at any estimates in subgroups because they're unreliable, and our center does not want to release estimates we can't stand behind," said Zablotsky.
Rates of developmental disabilities remained significantly lower in girls, at 5.31%, compared to boys, at 10.76%.
Asian children were least likely to be diagnosed with any developmental disability, at 4.85% of kids in this group. There were no significant differences between Hispanic, Black and White children. […]
• From The Washington Post: “Florida kept disabled kids in institutions. A judge is sending them home.”
[…]In his decision, United States District Court Judge Donald M. Middlebrooks called the difficulties faced by children and parents “heart wrenching,” and wrote that “any family who wants to care for their child at home should be able to do so.”
Children with disabilities typically are eligible for Medicaid services, which can be provided in a home setting or an institution. The state makes decisions about who qualifies and is responsible for paying for the services.
The cost of home health care can be cheaper than institutionalized care, but Florida has increased funding for nursing facility services while reducing funding for home- and community-based services, court documents show.
“The tragedy is that the State of Florida has programs and dedicated resources that could help these families,” Middlebrooks wrote.
The ruling, prompted by a lawsuit filed by the Department of Justice in 2013, could have sweeping implications for thousands of people across the country who need these Medicaid services to live in their homes or communities, a group that includes adults with disabilities and older people, along with disabled children and their families.
Florida is just one of many states across the country where experts say children with disabilities are being unnecessarily institutionalized rather than supported in home settings. Recently, the department has said other states, including Alaska, Maine and Nevada, also are violating the ADA in this way. […]
“In many respects, this ruling is groundbreaking,” said Kristen Clarke, the assistant attorney general for the Civil Rights Division at the U.S. Department of Justice. “Our hope is that this ruling will stand as a model for other states across the country and make clear and explain their obligations under the law.”
[…Father of one of the institutionalized children Conlan] Armour said it wasn’t until he became a witness in the lawsuit that the nursing facility finally gave him training and approved Cayden to go home. In June, Cayden started living with his father, Newton and his 18-month old sister Devi in Miramar, Fla.
Since getting home, he has become more active and is smiling and attempting to talk more, Armour said. His father hopes that this ruling will help other families.
“Whether it’s my child or somebody else’s child, we want change,” Armour said.
[Disability advocates…] believe the ruling could pressure other states to invest more in home and community based services provided through Medicaid. In 2021, 656,000 people around the country were on waiting lists to simply determine whether they qualify for these services. But even after getting approved, many people say they still can’t get this type of at-home nursing care.
[…]Eve Harris, 57, of Plantation, said she was forced to institutionalize her 16-year old grandson, Jeffery Herrion, for whom she is the legal guardian, because home caregivers increasingly didn’t show up during the pandemic. Herrion, who is blind, has cerebral palsy and other complex medical issues requiring him to use a ventilator, wheelchair and feeding pump.
“On paper, we had nursing because it was approved, but we didn’t really have nursing because nobody came,” Harris said.
While living in three different institutions Jeffery suffered from deep bed sores, smelled like urine and feces, and was hospitalized for septic shock after developing a severe skin infection. When he was admitted, Jeffery was taking five medications and breathing on his own. When he finally returned home in April, he required 18 medications and was ventilator dependent, according to both Harris and the judge’s ruling.
Harris still can’t get reliable nursing care, so she left her job and recently quit nursing school to care for Jeffery. She hopes the ruling will help her keep him home.
“He deserves that right, to be with his family members,” she said. “He deserves the right to be loved.”
• From YES! Magazine (opinion): “Children With Complex Medical Needs Belong at Home”
Children belong at home with their families. For children with complex medical needs, this is still true.
I know, because my son was institutionalized in a pediatric subacute facility for most of the first year of his life.
[…]Institutionalization is orders of magnitude more expensive than home care and developmentally harmful for children. It also disrupts the lives of parents and siblings.
[…]In order to bring our son home from the subacute, my husband and I had to demonstrate competence in the medical parts of his care. That part was difficult by any objective measure, but was easy compared to the second requirement. The facility also required us to find home nursing coverage — their initial requirement was that we have 16 hours a day of coverage, including overnight coverage, seven days a week. That requirement was insurmountable, but I spun my wheels for months trying to meet their demand. To bring him home it was my job to find home nurses, a supplier for his breathing machines, a pharmacy that could fill compounded and specialty prescriptions, and figure out all of his insurance and Medi-Cal paperwork. Institutional care provided all those things automatically, home care required me to be the ringmaster of the whole circus.
[…]I can still hear the doctor’s stern intonation when she told us, “You can never fall asleep.” She was solving the problem that she perceived — kids die when their parents fall asleep. But the solution she was providing put the blame and responsibility on the people with the least amount of power in the situation. The assumption was that the system of home care wasn’t going to be functional, and the solution was for parents to simply never sleep.
[…]Spending time in acute care hospitals may be unavoidable for these children when they receive treatments that can’t happen anywhere else. But in many situations, we could do more to allow these children to stay at home, instead of being forced to live in institutions that provide medical care. Our children and families deserve better.
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!
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• From AP News: “Families worry over the future of Medicaid caregiver payments that were expanded during the pandemic”
Nathan Hill started receiving $12.75 an hour from a state Medicaid program to help care for his severely disabled son during the pandemic, money he said allowed his family to stop using food stamps.
The program was designed to provide a continuation of care and ease a home health worker shortage that grew worse after COVID-19 hit.
But now, with the COVID-19 public health emergency over, he worries that the extra income will disappear. Some states have already stopped payments while others have yet to make them permanent.
“The success of this during the pandemic was tremendous … for the first time we were able to pay our own way,” said the Meridian, Idaho, resident. “We’re not relying on charities to help us pay our rent and utilities.”
[…] States found that being flexible with caregiver payments helped keep residents served during the pandemic, said Kate McEvoy, executive director of the National Association of Medicaid Directors. She said surveys have shown, too, that people generally like receiving care from family members.
But she also noted that there are concerns both nationally and at a state level about the potential for fraud when paying family members as opposed to an agency that may be subject to more oversight. States also want to make sure that any family caregivers are trained properly and provide quality care.
[…] “You provide better services to someone you love and care about,” said [Holly] Carmichael, whose daughter was born with a rare congenital disease. “They’re part of your life versus a job.”
Carmichael’s [financial services] firm helps people do background checks on potential caregivers and then does payroll, tax withholdings and other paperwork once they are hired.
She said it makes no sense to end payments to family caregivers.
“We have a shortage of caregivers in our country,” Carmichael said. “We need to be pulling every lever we can.”
• From Valley News (New Hampshire): “Summer camps for children with special needs in short supply”
[…] It was a Tuesday morning earlier this summer at Camp Aspire, a free, one-of-a-kind summer camp for children ages 6 to 16 with special needs run by the Special Needs Support Center (SNSC), a White River Junction-based nonprofit organization that assists families in the Upper Valley [of New Hampshire]. The Special Needs Support Center is primarily funded by grants and donations.
Within a week of opening for registration in January, the 14 slots for each week of Camp Aspire filled up, said [Emma] Woloshin, who leads Camp Aspire as part of her role as youth program services coordinator at SNSC. This year, it runs for one week in June and two weeks in August. During July, many Camp Aspire participants attend summer school programs in their home districts.
“It is a huge issue in the community and how fast our camp filled up is a testament to the need,” Woloshin said in a May phone interview. “I wish there was more we could do. We’re definitely trying, but the need is so big.”
[Mom Annie] Hoen noted that [finding a camp for her disabled son] is a stark contrast from finding camp programs for her 11-year-old [abled-bodied] daughter.
“It’s sort of alarming how when you have a child who is disabled or has extra health care needs, how narrow the options are compared with what’s already really kind of a tricky situation, trying to find care for young school-aged kids,” she said.
[…]Ideally, parents said, there would be more programs like Camp Aspire and more funding to pay for one-on-one aides at traditional camp programs. There would also be more programs that work for children with mobility devices and transportation to help campers get where they need to go.
“I would just wish that there were enough camp opportunities that every child who wants to go to camp or every family that has a need for camp in the summer could be included,” Hoen said.
• From the American Academy of Pediatrics (news release): “AAP to Create National Center for System of Services for Children With Special Health Care Needs”
ITASCA, IL — The Health Resources and Services Administration’s Maternal and Child Health Bureau has awarded the American Academy of Pediatrics (AAP) a $7.5 million cooperative agreement to form a new national center for a system of services for children and youth with special health care needs (CYSHCN). The project [started] in July.
With the five-year cooperative agreement, the AAP will establish a National Center Consortium (NCC) with Boston University, Family Voices, and The National Alliance to Advance Adolescent Health. The goal of the collaboration is to provide better care for more children and youth with special health care needs by supporting the implementation of the MCHB Blueprint for Change: Guiding Principles for a System of Services for CYSHCN.
[…]The systemic barriers facing children and youth with special health care needs and their families are long-standing and underscore the need for new approaches to advance the system of services. The AAP and its partners are committed to transforming and improving the systems of services for CYSHCN and their families through the NCC and subsequent national center.
See Medical Motherhood’s story from last year on the Blueprint for Change:
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Being strong has its advantages! The other day, I was waiting for a long time in the loading dock of a feed store and finally got bored enough to simply load my own 60-pound bale of hay. When you have a 70-pound kid to lift almost everyday, it ain’t no thang. But safe lifting is key! I know I’m just one sudden movement away from a bad back…. What do you do to stay strong?
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 the Chattanooga Times Free Press (Tennessee): “Department of Children’s Services wrestles with solutions for housing children in state custody”
Three months after the [Tennessee] Department of Children's Services announced it had ended the practice of taking abused and neglected children to state offices overnight, solutions are proving difficult to sustain.
Several faith-based shelters have closed, and some children remain in hospitals for lack of other options.
[…] Children with acute and ongoing needs — those with tracheotomies, in wheelchairs, with developmental disabilities, with mental health needs waiting on a bed in a mental health treatment facility and those with behavioral problems that include violence — are among the most difficult to care for at any point they come into state custody.
DCS has worked with the state's Department of Intellectual and Developmental Disabilities to begin transferring children with high medical needs out of hospitals and into Tennessee Strong Homes, former small residential facilities that had previously housed people transitioning out of state-run institutions that closed down nearly a decade ago.
The children being moved to those facilities are medically fragile with chronic health conditions that may confine them to wheelchairs, require feeding or breathing tubes, may have vision, hearing or communication challenges and are often developmentally disabled, according to Dr. Deborah Lowen, Deputy Commissioner of Child Health for DCS.
The homes are a temporary way station until children can be reunified with families or enter foster care, with DCS footing the bill for room and board while TennCare, the state's Medicaid program, covers the cost of medical care.
Child advocates say they're concerned about moving children to facilities staffed by professional caregivers, instead of families.
"We know children do better in families and communities," said Michele Johnson, executive director of the Tennessee Justice Center, which advocates for children's access to safety net programs, including health care. "It's taking them away from parents and any sense of normalcy ... Who is advocating for these children to grow up in communities?"
In her work trying to connect families with TennCare, Johnson said she often hears about parents' struggles to get in-home services covered for severely ill or disabled children. Some families have been encouraged to turn their children over to DCS to get them the care they need, she said. […]
• From Chalkbeat Chicago: “What education bills did Illinois lawmakers pass? Student mental health help, book ban prohibition, Native American history”
Illinois lawmakers passed a number of education bills at the end of the legislative session that will directly impact what children learn in classrooms across the state and what services they can access.
Lawmakers dedicated more state funding to early childhood education, pushed for a plan to change how reading is taught, and passed policy aimed at increasing access to mental health services for students. The general assembly also approved a $50.6 billion budget for 2024 that touted an additional $570 million for K-12 education and more funding to help students pay for higher education. Gov. J.B. Pritzker signed the budget into law […June 7….]
[Among the bills passed were:]
Career and Technical Education and dual credit opportunities for students with disabilities: House Bill 3224 will require school districts to provide a student and parent with information about career and technical education opportunities and dual credit courses. If the student is enrolled in a dual credit course, it must be included as part of the student’s transition Individualized Education Program activities.
Task force on children’s mental health: Senate Bill 0724 will make it easier for families to access mental health services across several of the state departments, including the Illinois State Board of Education. This bill will create the Interagency Children’s Behavioral Health Services Act and require the state to establish a Children’s Behavioral Health Transformation Officer who will lead the state’s effort to work across state agencies to help families get services. This bill unanimously passed both chambers of the general assembly with bipartisan support.[…]
• From the Montreal Gazette (Canada): “Road tripping is a different kind of journey with a disabled child”
At the end of the first day, Liam Défossés spiked a fever. He and his family — dad Yan, mom Emmanuelle and big brother Malou — were driving to Florida from their home in Sorel.
Families who road trip know fevers and sniffles aren’t unusual when you mess up a child’s routine and add excitement and boredom. Most children get over it quickly. For 10-year-old Liam, a fever could be a matter of life or death.
[…] That means researching every hospital along the route and travelling with Liam’s hefty medical file, his food and specialized stroller. The adapted van is packed with 10 cubic feet of equipment, including a BiPAP machine, a suction machine and another that monitors his pulse and oxygen levels — doubled, because they always travel with backups.
They drove instead of flying because “society isn’t inclusive and doesn’t have many accommodations,” Défossés said. “My son is not a baby, he’s 5 feet tall. You can’t go in the plane with a wheelchair. This is equipment that can cost up to $15,000, and what if when you get off the plane, it’s broken? People have to wear diapers on planes because they don’t have anything to accommodate people who are in wheelchairs. Governments must work to push companies to do more and better.”
[…]Liam has his own ideas about flying. In the spa at home, he floats and can move more easily. The clear next frontier is space, where he knows he can fly. He wants to be the world’s first disabled astronaut.
“He’s the one who has a lot of guts,” Défossés said. “When we have a plan that’s a bit risky, he loves it. Every time we do something he’s not supposed to do, he says, ‘We’re going to make it!’ We follow him.”
[…]Nadine Allard says she sees families like Liam Défossés’s struggle every day, and is discouraged when she hears all the things they need to fight for. Her team in the complex care unit of the Montreal Children’s Hospital follows patients who are medically fragile and who have medical technology at home. They help families navigate the health and social services landscape, which is broken into many different departments and aid organizations.
[…}These programs aren’t adapted for children, she said.
“Everything needs to go in a box. Children don’t go in boxes.”
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!
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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 see 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 Washington Post: “Your child is neurodivergent. Should you tell everyone?
“I never would’ve wanted to be the kid who everyone knew is dyslexic or had ADHD. For our son, we are getting all the outside support we can, but socially we’ve been quiet about it,” said [dad Pavel] Tabutov, who is also neurodiverse. “We would never lead with, ‘Our son has disabilities!’”
After hearing from his friend, Tabutov phoned the hostess [of a recent party his son attended] with an apology. He never mentioned his son’s severe ADHD, yet the incident has caused him to think hard about his position. Neurodiversity has taken on a new value and acceptance — last year, for example, LinkedIn started to offer “dyslexic thinking” as a skill users could add to their profiles.
But talking about it openly can also be problematic, particularly because children need agency over their own lives. And so parents are caught in a particular dilemma: Do they disclose their child’s diagnosis with the hope of educating and enlightening other people; do they wait for their children to decide what to disclose and when; do they keep quiet and continue to navigate sometimes difficult situations?
[…]“In my research, I’ve found that people with neurodivergence are successful when they carefully pick and choose. They decide who it’s safe to tell and who it isn’t,” said Alecia M. Santuzzi, a professor of psychology at Northern Illinois University who studies disabilities in the workplace. It’s called “reputation management” and Santuzzi acknowledges that “you can end up spending energy deciding who to tell, who not to tell and sometimes worrying about it.”
Despite this, experts say the reputation management model can be a healthy option for parents of neurodiverse kids. You want to ensure your child is proud of who they are and embraces their neurodiversity. But you also want to leave room for your child at some point to take over and decide for themselves whom they tell, [special education researcher Joy] Banks says.
[…]Banks says that if we look at the history of disability rights, especially the Individuals with Disability in Education Act (IDEA), it was signed into law only because parents began to protest. “There is still a need for social progress in the area of disability. There’s still a need for equal access and equitable access to resources and services. Parent advocacy can be powerful.”
As for Tabutov, he’s had a change of heart. “I’ve been thinking it over a lot. I don’t want other parents and kids to feel alone in this. My goal is to talk more about our struggles with disability. Not as an excuse, but for the sake of spreading awareness,” he says. “I also want people to recognize all the amazing abilities our son has. He’s smart, he’s capable, and he’s extremely creative. I think people will only be more tolerant and accepting if we’re open and honest.”
• From NEWS CENTER Maine: “Bill would pay Maine parents to care for their medically fragile kids”
The workforce crisis in Maine is taking a toll on families of children with the highest medical needs, who often step in to provide around-the-clock care themselves.
LD 346, which is awaiting a vote in both the Maine House and Senate, would pay parents to be their kids' caregivers.
Two bills sponsored by Rep. Jessica Fay, D-Raymond, and Sen. Joseph Baldacci, D-Bangor, considered by lawmakers this session, proposed extending MaineCare coverage to parent caregivers of sick children. Fay's bill, LD 346, was voted unanimously out of the Legislature's health and human services committee.
[…] With most of her son's care solely on her shoulders, Andrea, a social worker, is unable to work. Under Maine Care rules, the state's version of Medicaid, she also can't get paid to be James' caregiver, but that could change under a proposed bill.
"That would be such a huge relief if that compensation would be coming in," Andrea said.
The bill would extend MaineCare coverage to parent caregivers under Section 40, which covers home health services.
Nancy Cronin is the executive director of the Maine Developmental Disabilities Council.
Parents would have to apply to work through a home health care agency because you need a fiscal intermediary, which is a good thing, Cronin explained. Unlike children with behavioral health care needs, Cronin said there is currently no centralized referral system within Maine's Department of Health and Human Services where case managers can work with families of medically fragile kids, which could number more than 100 across the state, to find professional medical help.
[…]"It's going to be less of a burden for the taxpayers, and the home health industry will be getting more very skilled workers, so it feels like a win-win for everyone with children coming out on top," Andrea explained. […]
• From NJ Spotlight News: “Hospital system to leave NJ Medicaid network, could send special-needs kids scrambling for care”
South Jersey families with children who need highly specialized health care are worried about what will happen after a Delaware-based children’s hospital system with a growing presence here leaves New Jersey’s Medicaid network, a withdrawal that begins Aug. 1.
Nemours Children’s Health alerted New Jersey patients and doctors in late April that it will no longer accept new cases under the state’s Medicaid managed-care plans, which insure almost 97% of the 2.3 million residents in the state- and federally funded program, after that date. Nemours has roughly 11,000 New Jersey patients in managed care and will phase them out of their medical treatments through the end of November, according to hospital officials.
[…]“There are already people talking and feeling the desperation of, ‘I’m not going to be able to get the care my child needs in these already fractured systems,’” said Susan Coll-Guedes, a Galloway resident who has navigated the Medicaid system for years on behalf of her disabled son Alex, now 22. Options for this level of care are limited in New Jersey, she said, and the struggle to find appropriate care often involves travel to Philadelphia, Delaware or New York. Losing Nemours “really limits the lives of these children,” she said.
[…]On Sunday, Sarah Kalis launched a Change.org petition begging Nemours to reconsider its decision to cut care, which had gathered nearly 500 signatures by Wednesday evening. Kalis noted Nemours was founded with funding from Delaware industrialist Alfred I. du Pont, to care for crippled children, and said this decision goes against that mission. “New Jersey children will suffer. While Nemours has said they are committed to their continuation of care to New Jersey’s children, their actions are leaving established New Jersey patients out to dry without an appropriate solution,” she wrote in the petition.
[…]While Nemours said it is still open to discussion, [Pauline] Corso, [senior vice president and chief operating officer for Nemours facilities in the Delaware Valley] warned that families with special-needs children covered by Medicaid could face a challenging road ahead. Patients may need to “bypass our sites and may have to travel much, much further to receive the care and that care will probably be months away,” given delays caused by a growing shortage of physicians, especially those who accept Medicaid, which typically pays less than commercial insurance plans. “Some of these families, their children are seeing 12 to 13 specialists that are all coordinated within one health system, on one electronic medical record. Now they may have to go out and find 13 separate specialists.”
While discussions continue around Nemours’ place in New Jersey Medicaid, hospital leaders are backing legislation Corso said would serve as a starting point for a more holistic fix, and she urged parents to contact lawmakers to support the measure. A bill introduced in recent weeks would set rates for out-of-state children’s specialty hospitals at 125% of the Medicaid rate in their “home” state, which is generally higher than the payment structure in New Jersey. […]
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.
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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. This one feels like an allegory for waste in the system. Have you experienced this bizarre packaging phenomenon? Comment below or write us back!
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Fox 12 News (Oregon): “Parents of disabled children rally in Salem for caregiver funding bill”
On Thursday, parents of disabled children across the state gathered at the State Capitol in Salem to urge lawmakers to advance policies and funding for parents to be paid caregivers to their extremely disabled children.
“It is more than just a bill to us,” said Calli Ross. “This is truly life or death for our kids.”
It comes after hearing that Senate Bill 91, which would have made permanent a temporary program allowing parents to be paid caregivers to their disabled children permanent, would not be advancing this legislative session. Now, they are asking lawmakers to add the funding and policies to the end of session reconciliation bill along with a budget note to allow ODHS to move forward with applying for the waiver needed to establish a permanent program. […]
The temporary program started during the pandemic due to a shortage of caregivers across the country and to curb the spread of COVID-19 to vulnerable children. Several states have since made the program permanent. Ross and others say it’s been life changing for them and their kids.
[…]“We are begging legislators to listen,” said Ross. “This is way more than just politics to us. This is our children’s lives. We need something put in this session so we can resume this program before children fall off the cliff. We don’t have much time to continue on without support and right now that Oregon doesn’t want disabled children in the state. I’d like to see that change.”
Full disclosure: Calli and I work on this issue together and my kids and I were at this public demonstration.
• From WUSF Public Media (Florida): “Kids with disabilities housed in Florida nursing homes could return to families”
Children with complex disabilities who for years have been housed in nursing homes in South Florida could be able to return to live with their families as a result of a civil rights lawsuit.
The suit, filed by the Justice Department against Florida health regulators a decade ago, finally went to trial last month. It argues that the practice of institutionalizing medically fragile children in homes for the elderly violates the Americans with Disabilities Act, and seeks to push the state to create conditions which it argues would allow for families to be able to look after them at home.
[…]The trial raised concerns about Florida’s lack of private-duty nursing. That leaves many parents without an option to provide adequate in-home care, forcing them to keep their kids institutionalized.
“In one of the court files a family finally was able to get their kid out of a nursing home and the day that he was leaving, they had a goodbye party. The family got out of the home into the parking lot and they got a call saying the nurse quit before they even got the kid home,” [Carol Marbin Miller, an investigative reporter at the Miami Herald] said.
“And that is the biggest problem these families face — [it] is getting money for and then accessing in-home nursing care.”
• From The 74: “Due Process, Undue Delays: Families Trapped in NYC’s Decades-Long Special Ed Bottleneck”
[…]Special education is notoriously fraught in many school systems, but the magnitude of the problem in the nation’s largest district, New York City, boggles. The department is supposed to educate nearly a quarter of a million children with disabilities — a population that in 2019 was larger than the entire student body of all but seven U.S. school districts. In 2020-21, nearly 21% of New York City’s roughly 1 million schoolchildren received special education services, compared to a national average of 15%.
By all accounts, the Department of Education every year fails to meet even basic obligations to tens of thousands of children with disabilities. Stretching back two decades, numerous lawsuits and state audits have flagged the same problems over and over. Just this week, it was reported that 9,800 children — or close to 37% of NYC preschoolers with disabilities — did not receive all of their required services, and in March, it was revealed that 64% of bilingual special education students did not.
Because very little has changed, parents are forced — typically after years of neglect — to seek out everything from specialized instruction to intensive therapies on their own. They and their service providers are entitled to reimbursement.
[…]The “next steps” identified by the special master hint at how far from resolution those basic problems may be. The department, its report to the court suggests, should form a steering committee and appoint people to oversee “the areas of people, process and technology.”
Two pages of acronyms for various parts of the DOE bureaucracy precede 75 recommendations ranging from figuring out how to put accounts payable online so outside service providers can get paid to streamlining onerous civil service rules that complicate hiring enough people to handle the payments.
The document is in fact so complicated that Advocates for Children, which represents the plaintiffs in the 20-year-old case, translated those recommendations it agrees with into plain English and put them onto a simple chart along with suggested timelines for implementation.
The judge must now decide which recommendations to adopt, and how to hold the department accountable for progress. There is no deadline for that decision. […]
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.
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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?
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 74: “They Stood Up to NYC Schools for Their Disabled Child. Then Child Protective Services Arrived”
When their 7-year-old son, Tristan, who is autistic and nonverbal, arrived home from school with bruises and a lump on his head, Bronx parents Luis and Michelle Diaz began to worry.
They asked the school to look into the 2021 incident and requested a new paraeducator for their child. The classroom aide hadn’t mentioned the injury, despite messaging them throughout the day, the parents said, erasing their trust in her.
But the family’s search for answers and solutions brought them head-on into a problem they hadn’t anticipated: The school pointed the finger back at the Diaz parents, alleging neglect and inadequate supervision of their child. Soon, a caseworker with the Administration for Children’s Sevices, known as ACS, the New York City agency responsible for investigating suspected child abuse, showed up at their door.
“We were just trying to advocate for our son and find out what happened like any parent would,” Michelle Diaz said. “This is where the retaliation started.”
The school’s response reveals a startling pattern: Across the nation’s largest district, parents of students with disabilities who speak up on behalf of their children say they are being charged with allegations of child abuse or neglect — a tactic advocates say schools use to intimidate parents and coerce them into dropping their concerns.
Though it’s not clear how many reports may be retaliatory, New York City educators have made more than 3,500 calls alleging suspected abuse or neglect of children with disabilities over the past two school years, according to data obtained by The 74 through public records requests. Each one triggers an intrusive process that, at its most dire, can lead to the removal of a child from parents’ custody. Yet caseworkers found evidence of parental wrongdoing in only 16% of cases, and fewer still go on to withstand judges’ scrutiny.
In more than a dozen interviews, parents, advocates and researchers recounted what they described as a common practice of threats leveraged against families of some of the most vulnerable students in the city’s school system.
“Those are intimidation tactics that they do to parents,” said Rima Izquierdo, a Bronx parent leader who supports families of special needs children across the borough.
“This is a trend. … All the stories sound the same.”
Neither the Department of Education nor ACS responded to parents’ claims of retaliation when asked in an email. DOE spokesperson Nicole Brownstein expressed her agency’s commitment to “the safety and wellbeing of our students.”
[…] In 2022, the federal Office of Civil Rights received 1,708 retaliation complaints from families of students with disabilities. Numerous parent blogs describe anecdotal cases where schools have used child protective services reports or truancy charges to punish families advocating for their special education children. And the American Bar Association published a 2019 brief on the legal rights of parents of special education students who find themselves facing these allegations.
Previous reporting has revealed cases where schools weaponize the threat of calling child protective services against parents who aggravate educators or administrators. But families of special education students say they are at particular risk for the unlawful treatment.
It’s “a very common occurrence,” said Anna Arons, a New York University law professor, that when families have “substantial back-and-forth with the school about the appropriate services for their child” it can result in educators calling the state child abuse hotline.
School staff are one of several professions legally obligated to report suspected child abuse and neglect. But in New York City and nationwide, educators make a higher share of unsubstantiated calls than any other mandatory reporter category — meaning families often become needlessly ensnared in a process they describe as invasive and traumatic.
[…]An ACS spokesperson said in an email that the agency is working with educators and school leadership to reduce the number of families coming into unnecessary contact with the child welfare system, training educators to instead connect struggling families with resources like food or rent support. The agency runs several community centers across the city that offer free resources to families, such as clothing, food and diapers.
“We will continue to work with stakeholders, like NYC Public Schools, to help reduce unnecessary reports so that we can better focus our child protection resources on those who really need it,” the spokesperson said. […]
• From KFF Health News via Clinical Advisor: “As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage in 2023”
More than 600,000 Americans have lost Medicaid coverage since pandemic protections ended on April 1, 2023. A KFF Health News analysis of state data shows the vast majority were removed from state rolls for not completing paperwork.
Under normal circumstances, states review their Medicaid enrollment lists regularly to ensure every recipient qualifies for coverage. But because of a nationwide pause in those reviews during the pandemic, the health insurance program for low-income and disabled Americans kept people covered even if they no longer qualified.
Now, in what’s known as the Medicaid unwinding, states are combing through rolls and deciding who stays and who goes. People who are no longer eligible or don’t complete paperwork in time will be dropped.
[…]Tens of thousands of children are losing coverage, as researchers have warned, even though some may still qualify for Medicaid or CHIP. In its first month of reviews, South Dakota ended coverage for 10% of all Medicaid and CHIP enrollees in the state. More than half of them were children. In Arkansas, about 40% were children.
Many parents don’t know that limits on household income are significantly higher for children than adults. Parents should fill out renewal forms even if they don’t qualify themselves, said Joan Alker, executive director of the Georgetown University Center for Children and Families.
New Hampshire has moved most families with children to the end of the review process. Lipman said his biggest worry is that a child will end up uninsured. Florida also planned to push children with serious health conditions and other vulnerable groups to the end of the review line. But according to Miriam Harmatz, advocacy director and founder of the Florida Health Justice Project, state officials sent cancellation letters to several clients with disabled children who probably still qualify. She’s helping those families appeal. […]
• From The Guardian: “Australia’s kinship carers desperate for support as numbers of children in out-of-home care grow”
[…] Kinship and foster carers are facing increasing financial pressures amid the cost of living crisis and only marginal rises in government allowances. Advocates say the exit rates mean more children are placed in institutional care homes, considered a last resort.
Since 2019, Jane has cared full-time for her two grandchildren, aged eight and four, after she spent two decades as a foster carer. Her grandchildren are the 64th and 65th children she has opened her home to.
“I wanted to give children a better chance than the one I’d had. I wanted to give them a safe haven,” she says.
Jane says despite begging for monetary support from the Victorian government, she was only provided with one single bed, despite caring for two children. She says support to nurture the children’s First Nations culture was limited to a pencil case printed with Indigenous artwork.
Compared to her time as a foster carer, Jane says being a kinship carer is akin to being “the poor cousins” of the protection system.
[…] The CEO of Victoria’s foster care association, Samantha Hauge, says current funding is inadequate and put carers in an impossible situation.
“Either they pay for services out of their own pocket (with the hope that they might be reimbursed at some stage in the future) or let the children go without,” she says.
The association praised the state’s budget providing a one-off $650 supplementary payment for each child for all foster and kinship carer households, but says there is no funding to increase the care allowance.
Kinship Carers Victoria says the budget initiatives would not allow carers to “lift themselves out of poverty.” […]
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.
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I’ve been enjoying seeing your pictures portraying your experiences with medical motherhood. Some are hard and heartbreaking, while others are funny or beautiful, but all of them show the fierce love and devotion you have for your kids. Send in your photos to [email protected].
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Disability Scoop: “Medicaid, Disability Programs Could Face Cuts In Debt Ceiling Negotiations”
The future of Medicaid and other programs critical to people with disabilities are on the line amid a Washington standoff over the nation’s debt ceiling, advocates say.
President Joe Biden and leaders in Congress are working to reach a deal to avert a first-ever government default. Without an agreement, Treasury Secretary Janet Yellen has warned that the U.S. could hit what’s known as the debt ceiling as soon as June 1.
Last month, the Republican-led U.S. House of Representatives passed a bill to raise the country’s debt limit — the amount of money that the government is permitted to borrow. The bill included work requirements for Medicaid beneficiaries and significant cuts to domestic spending, which would affect everything from education to employment, housing and other programs for people with disabilities.
The measure was seen as a nonstarter for Democrats, who control the Senate, but disability advocates say the bill shows what’s at risk in the negotiations to avert a fiscal crisis.
“Given the consequences to the economy, there is enormous pressure to reach an agreement that can pass the House and the Senate,” said David Goldfarb, director of policy at The Arc of the United States. “In addition to Medicaid cuts, I am very concerned about caps to discretionary spending which will hurt people with disabilities. Caps to discretionary spending could mean less funding for accessible housing, less funding for special education, a worsening Social Security Administration customer service crisis, and so much more.”
Advocates have been particularly alarmed by Republican efforts to impose work requirements on many Medicaid beneficiaries. Even with exemptions for people with disabilities and their parents and caregivers, they say that additional red tape would make it likely that individuals will lose coverage, which could include access to home and community-based services. […]
• From KCCI (8) in Iowa: “'These kids need a voice': Parents worry about budget cuts to agencies helping special needs kids”
[…]Iowa has nine [Area Education Agencies or] AEAs that provide special education services to public and private school students across the state. The agencies also help families who have infants and toddlers with special needs.
State lawmakers agreed months ago to increase public education funding by 3%, which will boost how much state aid school districts and AEAs get for each student enrolled in public school.
Despite that increase, Republican lawmakers also agreed to reduce state funding to the agencies by nearly $30 million next year. They made that change while finalizing the state budget during the last week of the session.
It is the largest of ongoing budget cuts that AEAs have faced for decades.
Lawmakers are required each year to cut AEA funding by roughly $7.5 million. Jon Sheldahl, Chief Administrator for the Heartland Area Education Agency, says lawmakers have also approved an additional $15 million cut for the past several years.
But Sheldahl says agencies were shocked when Republican lawmakers approved a $22 million budget cut this year instead.
"We were fully expecting a $15 million cut at the end of this session. We get one every year," Sheldahl said. "But we weren't expecting the extra $5 million [cut]...We're getting less than we budgeted for, and we're getting less-- to budget for staff going forward."
[…]Sheldahl says students who get direct services, including speech, physical or occupational therapy, could get them less often.
"It'll impact our ability to add the staff that we need to keep up with the growing population," Sheldahl said. "It will decrease the frequency with which many students receive services, how often [and] for how long."
Parents of children with special needs worry about what a future with fewer services would look like. […]
• From the Associated Press via The Hill: “Double amputee Everest climber pledges to work for benefit of people with disabilities”
The first double above-the-knee amputee to climb Mount Everest returned from the mountain on Tuesday pledging to dedicate the rest of his life to helping people with disabilities.
Hari Budha Magar, a former Gurkha soldier who lives in Britain, reached the peak of the world's highest mountain last week.
“My main aim for the rest of my lifetime is going to be working to bring awareness about disability,” Magar said on his return to Kathmandu, Nepal's capital.
As a soldier in a Gurkha regiment in the British army, Magar lost both his legs in Afghanistan when he accidently stepped on an improvised explosive device in 2010.
[…]“If a double above-knee amputee can climb Everest, you can climb whatever mountain you face, as long as you are disciplined, work hard and put everything into it,” he said.
Magar was born in a remote mountain village in Nepal and later was recruited by the British army as a Gurkha. He now lives with his family in Canterbury, England. […]
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Welcome to the first edition of our new format (announced May 7)! This issue features The 19th’s reporting on the significant impact of caregiving costs on women’s lifetime earnings — a Department of Labor report that does not include care for adults with disabilities, but is interesting nonetheless. We also take a look at a piece from The New Yorker on parents’ ongoing struggle for a “free appropriate public education” for students with disabilities. Finally, NorthJersey.com has a piece on legislation to require a safety plan for students whose disabilities make it difficult to “run, hide or fight” during a mass shooting or other evacuation event.
As an aside: Thank you so much for still being a subscriber. I’m kind of amazed that you all stuck around! I would love to feature your photos in upcoming editions, so please feel free to reply to this email with one or two so we can continue to show the world what medical parenthood is really like. 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 The 19th: “Caregiving costs women nearly $300,000 in lost pay over their lifetimes, Department of Labor finds”
The cost of caregiving on women’s lifetime earnings now has a number: $295,000.
A new report released Thursday by the Department of Labor projects how caregiving for children and parents affects women over the course of their careers, eating into their retirement savings and costing them wages and promotions.
The research projected the lifetime employment costs brought on by unpaid family care for women born between 1981 and 1985, now entering their early 40s, who have already taken on care for their children and will likely care for their parents, parents-in-law and spouses. The estimate is adjusted for inflation and is in 2021 dollars.
[…]The numbers are still very likely an undercount, the Women’s Bureau said. Because of limitations in the data, the research excludes care for adults with disabilities and caregiving costs unrelated to employment, such as the cost of day care and the emotional impact of caregiving.
Of the $295,000 figure, 80 percent is attributed to lost earnings due to caregiving and 20 percent is lost retirement income as a result of lower wages. The majority of the loss in wages comes from caring for children. Care for other adults totals only 15 percent of the costs, researchers found, because women are less likely to reduce their employment to provide it.
[…]The impacts are particularly outsized for Latinas, who are more likely to have more children and work in low-paying jobs with very limited flexibility, the report found. Less pay also means there are few child care options — the average annual cost of child care in the United States is nearly $11,000, which is out of reach for many Latinas. Without access to care, Latinas see their lifetime earnings slashed by 19 percent, the most of any racial group. That figure is 8 percent for Black mothers, 15 percent for White mothers and 14 percent for other groups [….]
• From The New Yorker: “The Parents Who Fight the City for a ‘Free Appropriate Public Education’”
[…]New York City’s public-school system has roughly a million students; about a hundred and eighty-one thousand of them have I.E.P.s, and there are thousands of Carter cases pending at any time. […Carter cases refer to lawsuits in which the family sues a public school district for tuition to a private school that can meet their child’s educational needs…] Because federal law requires that I.E.P.s be reviewed annually, families typically must file due-process complaints for tuition reimbursement every school year, which puts additional strain on the system. If, say, a mother prevails in arguing that her autistic first grader is appropriately placed at a private elementary school, she may still have to retain an attorney, front tuition fees, and await an impartial hearing for second, third, fourth, and fifth grade.
Lately, the number of New York City’s Carter cases has soared. Last fiscal year, the [Department of Education or] D.O.E. spent nine hundred and eighteen million dollars related to due-process claims, which, in inflation-adjusted dollars, was more than double what it spent in 2015 and more than four times what it spent in 2010. (Roughly one in every forty dollars that the D.O.E. spends is related to due-process claims.) The increase was driven by the coronavirus pandemic and the prolonged school shutdowns that followed—many special-education students regressed while in isolation and could not meaningfully access support services through a Zoom screen. Meanwhile, the crisis of covid-19-driven teacher burnout, which caused high rates of turnover and attrition, hit the special-education field hardest.
[…]During her stint as a cosplay attorney, and in her years of teaching, Emily told me that she has seen many violations of federal education standards that had nothing to do with lack of competence or good intentions but, rather, a lack of resources. The principals, psychologists, teachers, and social workers who were tasked with conceiving an I.E.P. did not have the funding, the training, the classroom space, or the credentialled colleagues to put the document into action. But those limitations are not a mitigating factor under I.D.E.A. “It is against the law to restrict your offerings based on what you have available in your school building—but, realistically, a lot of schools do that,” Emily said.
Many—perhaps most—due-process claims circle around this fiscal void. Rebecca Shore, of Advocates for Children, told me, “It shouldn’t be a matter of, ‘Well, we have no providers, so we can’t provide this service.’ It should be, ‘There are no providers—what are the reasons for that, and how do we come up with a solution?’ ” She went on, “The D.O.E. needs to take whatever steps are necessary to make these into jobs that people actually want to do.” In 2021, a salaried paraprofessional who shadowed a child with physical or behavioral challenges in school, for example, made between twenty-eight and forty-four thousand dollars per year. When support services such as speech or occupational therapy are not available at school, the D.O.E. offers vouchers that parents can use for approved private providers, but most therapists don’t accept them, owing to the low rates of compensation and long delays in receiving the money. “So one very simple solution is for the D.O.E. to pay more and pay quicker,” Shore said.
[…]“One of the most frustrating things is that when people talk about inclusive education, they don’t mean kids like Travis,” [Travis’ father] Dan told me at the playground, as we followed the kids toward the basketball courts. At one point, the family was deep into the application process at a private school where, Dan said, “all over their Web site is ‘inclusive, all kids.’ They said, ‘We would love to be part of Travis’s story.’ And then they see the I.E.P. and they learn all the details, and they’re, like, ‘Well, actually, we’re not set up to deal with a kid like this.’ ” The options, Dan said, “are either very lockdown-prison-feeling-type things, or a place where you’re taking a real risk, because the school will not deal with aggressive behavior.”[…]
• From NorthJersey.com: “Left behind in school evacuations, students with disabilities demand more protection in NJ”
With mass shootings on the rise nationwide, local school officials are confronting a unique challenge for one of their most vulnerable populations: how to ensure the safety of students with disabilities.
In New Jersey, that has prompted new legislation ordering districts to take the needs of students into account, amid tales of children left at the top of staircases or told to hide on their own.
Willingboro's Kevin Nunez, whose cerebral palsy necessitates a wheelchair, is 35. But he still remembers the fear of waiting by himself two decades ago while his fellow Bridgewater-Raritan Regional High School students evacuated without him during shooter drills.
“When I was in school, my evacuation plan was to wheel myself into the ladies’ bathroom, pull into the handicapped stall, which was the only place big enough for my power wheelchair, and turn around with my back to the door," Nunez, the vice chairman of the state's Council on Developmental Disabilities, recalled in an interview.
"They told me that if a shooter came in, the bullets would have to go through the metal door and my wheelchair before they hit me. I was told to wait there, alone, in the dark."
[…]the New Jersey Council on Developmental Disabilities adopted a white paper outlining emergency preparedness concerns that came out of a summit it hosted in 2017. Educators, school administrators, advocates and emergency personnel came together to discuss how to develop more inclusive emergency plans.
The council recommended that students with disabilities participate in emergency plans and drills tailored to their needs. Parents, educators and first responders should collaborate with disability advocates, and the plans should be evaluated regularly. Training should include all school staff across disciplines.
A bill in Trenton, S2057, would require districts to amend emergency plans to include students with disabilities in monthly fire and security drills. It would also mandate staff training on accommodating disabilities. A law enforcement officer would have to be present for at least one drill per school year to assess the procedures.
The legislation would also require emergency planning for individual students with disabilities to be documented in their health care plans, 504 plans and Individualized Education Plans.
The bill has passed the state Assembly and is scheduled for a vote in the state Senate on May 22, according to the office of state Sen. Shirley Turner, who co-sponsored the legislation with fellow Democratic state Sen. Linda Greenstein. […]
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!
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