Happy Father's Day from Medical Motherhood
This week: The future of disability rights, special education and family caregiving faces new challenges — while parents keep pushing for inclusion, support and dignity.
Disability parenthood is interesting because the “default parent” isn’t always fixed. Sometimes it shifts with the seasons of your child’s life.
In the early years, I was the default parent. My body made milk. My brain thrived on keeping track of a thousand moving parts: therapies, medications, appointments, developmental leaps, new challenges.
But now our children are teenagers, and I find myself watching that role quietly cross-fade to my husband.
He’s the one who can safely lift our wheelchair-using son. He’s the one whose mind is comforted, rather than exhausted, by routines that repeat day after day. While I excelled at adapting to constant change, he excels at steadfastness.
This Father’s Day, I’m thinking about all the dads who step into whatever role their children need, even when it’s hard, even when it’s invisible. The fathers whose strength is physical, emotional, practical, or simply showing up again and again.
I’m grateful for my children’s father. And I’m grateful for all the dads doing right by their disabled kids.
Happy Father’s Day, medical dads.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From CBS News: “States aren't required to provide community-based care for people with disabilities, new DOJ opinion claims”
The Justice Department released a new legal opinion Thursday that civil rights experts said represents a significant attack against people with mental, physical and intellectual disabilities who receive state-funded services.
The Office of Legal Counsel opinion said states are not actually required by law to integrate mentally disabled patients with their peers by providing community or home-based care, a finding experts say runs counter to long-standing legal precedent and would lead to greater rates of institutionalizing people with disabilities.[…]
• From WRAL News: “Families of kids with disabilities warn Education Department changes could break a flawed system”
[…]Under the changes announced Tuesday, the Department of Justice will take over civil rights enforcement in schools, and the Department of Health and Human Services will oversee special education. The moves help fulfill Trump’s campaign promise to dismantle the Education Department. Linda McMahon, the education secretary, pitched the changes as a way to get more help to families of kids with disabilities.
Advocates said special education doesn’t belong in a health department, which usually treats disabilities as conditions to manage, instead of differences in how children learn. The top Republican on the Senate education committee agreed, saying he’d pursue legislation to keep special education out of Health and Human Services.[…]
• From KFF Health News: “Final Rules for Medicaid Work Requirements Are Out. Here’s What You Need To Know.”
[…]Children and pregnant people, as well as individuals with disabilities who receive Social Security payments — all groups that already qualify for Medicaid — won’t be subject to the rules. Nor will people determined to be “medically frail,” or too sick to work.
People subject to the work rules are “crowding out” people in the Medicaid program who are “truly in need,” CMS Administrator Mehmet Oz claimed during a June 1 press call. “Work requirements are going to turn this around, we hope.”[…]
• From Spectrum News: “New York families plea for state help to care for medically fragile children”
A proposal that would financially assist parents caring for medically fragile children failed to pass the New York state Legislature this session.
It comes at a time when the state of New York like much of the nation is dealing with a nursing shortage.
“I cannot stress enough,” said Linda Molina, co-founder of the Voices for the Medically Fragile of New York. “This is not just for my family; it is for all the families that are behind us here.”[…]
• From Tennessee Lookout: “Congressman urges Gov. Bill Lee to revoke directive to report immigration status of sick kids”
Tennessee U.S. Rep. Steve Cohen on Wednesday urged Gov. Bill Lee to revoke a state directive that requires the reporting of approximately 400 sick or disabled children enrolled in a public health program to a state immigration enforcement division.
In a letter to Lee, Cohen called the directive “morally repulsive” and “inhumane.”
“As you wind down your term of Governor, consider your Christian background as you implement policies that will define your legacy,” wrote Cohen, a Democrat, citing Biblical passages. Lee, a Republican, is in the last year of his second term in office.[…]
• From 5 NBC DFW: “The private school choice boom leaves behind many kids in public school”
[…]Today, nine states have taxpayer-funded scholarships to help students with special needs attend private school or learn at home.
But leaving the public school system is risky for many of these students, and special education advocates have long warned against it. Private schools aren’t legally required to admit students with special needs. Contreras was surprised to learn private schools also aren’t obligated to offer services to help kids with disabilities, as public schools are.
Despite decades of research on school choice, academic scholarship hasn’t kept pace with states targeting vouchers to students with disabilities. How those students are faring academically in traditional private schools is unknown.[…]
• From Fox SA (Texas): “San Antonio mother fights to restore her disabled son’s cancelled Social Security checks”
“I will fight until I have no fight in me left whatsoever,” [medical mom La Marlo Kwaja] declared. “I will never give up on that young man. I will never give up on Michael Blake never in life.”
The Problem Solver reached out to the Social Security Administration to get answers.
We wanted to know why the SSI checks that were already approved were cut off, and why paternity was questioned after she’d already received years of Child Support.
Because of privacy concerns, we never got an explanation.
• From People: “Wheelchair User and Ballet Teacher Says Learning to Pirouette Can Be 'as Emotional as It is Terrifying' for Disabled Dancers (Exclusive)”
[…]“The collaboration with The Royal Ballet School, alongside the fact that our sessions sold out within minutes, really highlights both the demand for inclusive, professional-level dance and how eager disabled dancers are to be welcomed into these spaces,” she says.
For years, she says she has heard from dancers who were rejected from traditional ballet classes despite wanting the same opportunities to learn and improve as their peers.
“What we see in moments like this is how much joy, freedom and artistry can emerge when those barriers are removed and dancers are genuinely given the opportunity to participate,” she says.
• From The Washington Post (Opinion): “After my sister died, I came to understand what suffering is for”
[…]Suffering is part of life. But suffering has to be connected to some purpose, or else it is just a way of showing pride in how much you can endure. Families with a disabled child are often encouraged to embrace the challenges they face but given no idea of what the suffering is for.
[…]Thinking about heaven helped me make sense of my family’s experience and the purpose of the sacrifices we made for my sister.[…]
Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.
Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.
Not ready for a subscription but like what you read here? You can also buy me a coffee.
Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.