“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we've been waiting for. We are the change that we seek.” — Former President Barack Obama

A medical mama’s desk full of medical bills and family photos. Photo by Dawn Schoppe

A years-long effort to identify just how messed up our health care system is for kids with extra health care needs — and what to do about it — culminated this summer.

Called the Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs, the multi-part series was published in June in Pediatrics, the journal for the American Academy of Pediatrics.

The Biden Administration’s Maternal and Child Health Bureau spearheaded the effort to categorize and address the challenges faced by the kids they call “Children and Youth with Special Health Care Needs (CYSHCN).”

What did they find? If you, like me, are a parent of such children, it will not come as a surprise. But perhaps it will feel like a validation.

One in five American children have “special health care needs” — a population that any child can join in a split second. (Disabled children are considered a subset of CYSHCN.) Nearly 86 percent of American families of CYSHCN reported that they are not getting care in a well-functioning system. The problem is even worse for children in social minorities and it got worse during the COVID-19 pandemic. But, the authors note, there is hope.

“The COVID-19 pandemic highlighted the fragility of sectors serving CYSHCN and families,” reads the introduction, “yet also demonstrated how quickly large health systems, public health agencies, and payment structures can pivot to meet the needs of children and families.”

The Blueprint breaks down the vision to address these problems into four focus areas: health equity; family and child well-being and quality of life; access to services; and financing of services.

I had the good fortune to connect with one of the authors of the piece on health equity. Dr. Alison Martin works here in Portland, Oregon, at the Oregon Health and Science University’s Title V program: the Oregon Center for Children and Youth with Special Health Care Needs (OCCYSHN).

I asked her what the big deal was about the Blueprint.

“What’s really new about it is that institutions that reflect dominate culture (the Maternal Child Health Bureau and the American Academy of Pediatrics) are coming forward and saying equity has to be attended to,” Martin said. “They are calling out racism and ableism.”

Martin got involved after collecting stories and data from local communities of color, who reported interpersonal as well as institutional racism when interacting with the health care system.

The article she co-wrote, Health Equity for Children and Youth with Special Health Care Needs: A Vision for the Future, includes some of the most poignant stories in the entire supplement. Check out this passage about a mom’s experience with a home health nurse:

Nurse Sara (not her real name) is young and remarkably tall. I take a step back, slightly straining my neck to meet her gaze. She looks just beyond me though, her focus instead a calculated scan of the house. She’s new here—to our home as a potential caregiver, as well as to the nursing profession. Children like ours, the ones with complex medical histories, need lots of orientation. They’re tricky. The best way to make accurate assessments is to respect and learn from the lived experience of the people who have been the constants in their wildly unpredictable lives. Our home is nurse Sara’s first job. Here I am, attempting to go over essential parts of Josh’s medical history, the nuances of his behaviors that must inform his most basic assessments and care—and nurse Sara is not at all interested. “Listen,” she says, with the commanding and familiar air of putting me in my place, “I’m the nurse here, and you’re just the mom.” I call the agency to express concern; this sort of attitude among home care nurses almost always ends in an unplanned hospitalization. The agency defends nurse Sara’s indiscretion. Interruption in care and reimbursement dollars is sometimes a far greater evil than the skewed dynamic of being disrespected and diminished in one’s own home. “She’s from a small town, and she’s not used to people like you,” the coordinator says. “Like us? Suburbanites?” “Um, no.” “Military families?” “Black people. She’s just not used to being around Black people. It makes her uncomfortable.” They ask that I be patient, teach her, allow her to allay any fears. But I am emotionally exhausted after years of various versions of the same scenarios. This is my house. My safe place. Nurse Sara is not invited back. – D.H.

A number of researchers worked on the health equity piece of the Blueprint, including Dr. Amy Houtrow, a pediatrician, educator and advocate at the University of Pittsburgh School of Medicine and herself someone with childhood-onset disability.

On the podcast version of Pediatrics, Dr. Houtrow said the Blueprint’s goal is to get pediatricians to start thinking not only about how they can better address family needs in their clinics but also at state and federal levels.

“I think we’re often taught that doctors should stay out of politics, but we have to be in it because we have to be in it for the policy,” she said. Dr. Houtrow said some of the ways the Blueprint’s findings could be incorporated into policies are by expanding Medicaid access and advocating for other things that CYSHCN need.

“Even though it can feel like a monstrosity of a health care system, there are things that we can do to help families of children and youth with special health care needs navigate and get the services that they need,” Dr. Houtrow said on the podcast, noting the intersections on this population of the education and social services sectors. “The more that we can do to advocate — one by one — for the patients we care for and for children in general, that is our path forward to help children be as healthy as possible, to live full lives, to live in their communities and develop themselves into the adults that they want to be when they grow up.”

Cara Coleman, the lead author of another section of the Blueprint, wrote a layperson-friendly summary of the Blueprint on the AAP’s Family Connections blog. Coleman advises families to read the supplement and even print out and highlight portions that match your experience to take to healthcare and school team members. The Blueprint can also be a lens for action in advisory committees, councils and boards, she said.

The ultimate goal? Systems that actually work for the benefit of the child, instead of whatever the heck it is that they are doing now.

“We really need to hold true in our hearts that every child — regardless of their circumstances — has a fair and just opportunity to be as healthy as possible,” Dr. Houtrow said. “And it doesn’t matter the color of their skin. It should not matter whether they have disabilities or not — we should all be working towards that.”

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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 Expanding Offerings For Kids With Severe Needs”

Federal Medicaid officials are issuing new guidance aimed at making it easier for children with complex medical conditions like severe autism and cerebral palsy to access the care they need, even if that means crossing state lines.
Under a new optional program, states can receive a temporary bump in federal Medicaid funding to create a “health home” benefit.
The offering, established by Congress in 2019, is designed to address the needs of children with significant health issues who require specialized care that often necessitates traveling out of state, according to the Centers for Medicare and Medicaid Services.
In a 15-page letter sent last week to state Medicaid directors, CMS is now detailing how states can partake in the new program, which will begin Oct. 1.
“Every child deserves the care and support they need to stay healthy and thrive. This new Medicaid health home benefit will give states new options and financial incentive to improve care for children with complex medical conditions,” said Secretary of Health and Human Services Xavier Becerra.

• From CNN: “Raising her autistic son taught this mom hard lessons that she's used to help thousands of underserved Chicago-area families”

In the spring of 1989, Debra Vines found her 18-month-old son, Jason, staring ahead blankly in his crib, as if he was in another world. Alarmed, she and her husband rushed him to the hospital.
After visiting several doctors, they eventually got a diagnosis: autism.
[…]As Jason got older, Vines had to contend with his frequent tantrums and occasionally violent behavior that children with autism may exhibit. Her family moved from Chicago to Maywood, a small, predominantly Black suburb, hoping there would be more services, but the assistance lagged far behind that of more wealthy communities. Vines says she was desperate for support.
"My whole life revolved around finding services for Jason. To be able to get any type of assistance I had to take a train, plane, bus, and a magic carpet to get there," she said. "Multiple cocktails of medication, changing doctors, changing hospitals. And most of it I did alone because my husband worked nights. I felt totally helpless."
[…] "I made a vow that I wouldn't want any parent to have to experience what I've been through," she said.
In 2007, Vines and her late husband, James Harlan, created The Answer Inc., a nonprofit that supports families in underserved communities who've been impacted by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.
"Families are always asking questions, and we want to provide the answers," she said. "I would say 95% of everything that we provide is a blueprint of what I was missing as a parent."
Many of those who Vines supports are from Black and Brown communities -- a demographic known to face hurdles in the diagnosis and treatment of autism. The CDC reports that Black and Hispanic children are less likely to be identified with the condition, and researchers at Boston University found that Black children are five times less likely to receive early intervention services than white children -- due in part to racial bias and cultural stigma.
Vines is working to change that. Once children have been diagnosed, she helps connect families with the information and services they need, especially within the school system. Her organization also provides parent support groups, a 24-hour helpline, and a host of activities for individuals impacted by autism.

• From BusinessWire: “Feinstein Institutes Awarded $5.6M to Study Future Planning, Pediatric Caregiver Well-Being”

“A caregiver for a person with an intellectual or developmental disability is faced with daily challenges, including planning for the future,” said [co-principal investigator] Dr. [Sophia] Jan. “With this generous award from PCORI, we hope to ease that by identifying new methods of care planning that will give them peace of mind.”
Once enrolled, the family caregivers will be assigned to one of two groups. The first will have access to a novel online planning tool and regular care coordination with their state or county disability services provider. The other group will receive regular care coordination with their state or county disability services provider and will be asked to review online modules unrelated to future planning. The research team will compare changes in family caregiver burden and well-being for 18 months.
“It is important that researchers and clinicians continue to investigate new ways to better improve the quality of life and care for people with intellectual and developmental disabilities,” said Charles L. Schleien, MD, senior vice president and chair of pediatric services at Northwell Health and professor in the Institute of Molecular Medicine at the Feinstein Institutes.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

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National 'Blueprint' aims to combat systemic…