Supporters of Medicaid cuts say they won’t impact children. Some Colorado parents don’t believe it. ...Middle East

On the day he went to Washington, Malakai Norick, 12 years old, neatly tucked a dark blue shirt into black pants.

He carried a blue folder with information to hand out. His sneakers squeaked across marble floors between lawmakers’ offices.

Why Malakai had come to the nation’s literal halls of power with his parents was simple: He wanted to be seen and heard by the people who will vote on the future of Medicaid, a program that is among the reasons why he is alive today.

“They had a saying for him in China that was essentially ‘the baby that should die but doesn’t,’” said Tim Norick, Malakai’s father. Tim and his wife, Kara, adopted Malakai from an orphanage when he was 2½. The family, which includes five other children, lives in Littleton.

Malakai was born with a rare syndrome called Opitz G/BBB, which affects the development of the body’s structures and organs along the midline, from the eyes and mouth on down. This has meant numerous surgeries for Malakai, as well as other treatments, including one hormone therapy that alone costs upward of $10,000 per month.

The family has insurance through Tim’s job, but it doesn’t cover everything. And so Medicaid, which provides supplemental insurance, is both their safety net and their lifeline. During one period when they were accidentally dropped from Medicaid coverage due to an administrative mistake, Malakai’s care quickly ran up hundreds of thousands of dollars in bills.

“For so long, we’ve been like, ‘Oh, thank God we have Medicaid,’” Kara said. (The family was able to get those bills retroactively covered.)

“Kids are inevitably going to be impacted.”

Supporters of the giant tax and spending bill currently working its way through Congress — also known as the One Big Beautiful Bill Act — say that shouldn’t change. Malakai is among the more than 50,000 Coloradans who are covered due to disabilities, and advocates for the bill say their benefits won’t be impacted.

“If you’re like one of my kiddos and you’re medically complex, if you’re a pregnant woman, if you’re kids, none of this stuff applies to you in terms of work requirements or any of the reforms in Medicaid,” U.S. Rep. Gabe Evans, a Republican who represents a district that takes in slices of Adams, Weld and Larimer counties, said at a news conference in May. “In fact, it benefits you by preserving these resources.”

(Citing concerns for his child’s privacy, Evans has declined to elaborate on his son’s medical complexities, and Evans’ office declined to say whether he is covered by Medicaid.)

But many Colorado families with kids covered by Medicaid — and those who advocate for them — are worried that’s not what would happen.

They point to language in recent proposals that would reduce funding going to hospitals in Colorado, especially those that treat a high number of Medicaid patients. They mention rules that would require certain Medicaid recipients to have their eligibility checked twice as often, or that limit retroactive coverage of medical bills, and worry that they could be swept up into that by accident or design.

Because many parents of disabled children on Medicaid in Colorado are able to receive both Medicaid coverage for themselves and employment as a caretaker for their child, they worry that dramatic changes to the program could upend the delicate system they have built.

Zach Zaslow, Children’s Hospital Colorado’s vice president of community health and advocacy, said the fear is that a deep cut to Medicaid — no matter which chunk of the program it cuts into — would require the governor and state lawmakers to take across-the-board action to balance the program’s budget while trying to maintain coverage for as many people as possible. That could mean, for instance, cuts to how much medical providers are paid for services, which could then trickle down to what the parent-caretakers are paid.

“That will absolutely impact kids’ access to care, even if the forcing function is because of work requirements or other changes that are targeted at adults,” Zaslow said. “Kids are inevitably going to be impacted.”

Which is why Malakai and his parents, working with Children’s Hospital Colorado and the Children’s Hospital Association, wanted to meet members of Congress or their staff face-to-face.

“It’s become such a numbers game,” Kara said of the debate in Congress over Medicaid and other provisions of the bill. “If we had a message, it would be, ‘Please don’t lose touch.’”

A delicate balance

Rachael MacPhee ticked through the medical needs of her son Jonnie as if she was recalling a recipe from memory.

“He sees a very specialized genetic cardiologist and neurology,” she said. “He wears glasses; we see ophthalmology. He’s catheter dependent. He has a special surgical port that we use for catheterizations and see urology and nephrology for his kidney disease.”

Jonnie is 8, just graduated from second grade and is in what MacPhee describes as “his mullet phase.” He loves riding his bike, building with Legos and, being 8, butt jokes. This summer, he is determined to learn how to rock climb.

“We see pulmonology because he’s always at high risk of pulmonary challenges,” MacPhee continued. “We have oxygen at home for when we need it. He’s starting to have mobility issues because his joints are very loose. So we’re in the rehab clinic and the pain clinic.”

When he was 3 months old, Jonnie was hospitalized with a lung infection and struggled to get better. More hospital visits followed, including his first heart surgery at 6 months old, until, finally, a diagnosis. Jonnie has a genetic disease so rare that it doesn’t even have an elegant name or acronym: Multisystemic Smooth Muscle Dysfunction Syndrome or MSMDS. It impacts the function of all of his body’s smooth muscles — muscles that make organs and blood vessels work. Maybe 60 people worldwide have been diagnosed with it.

“We see the palliative care clinic,” MacPhee finished her list, “because this is a life-shortening and long-term illness.”

Jonnie qualifies for Medicaid coverage because of his many health conditions. But, because coordinating his care, plus tending to Jonnie’s daily needs, is more than a full-time job, MacPhee is also among the parents in Colorado who receive payment from Medicaid via a home health care company for being her child’s caretaker. It’s not a lot of money, but it’s enough to provide a tiny cushion of comfort for MacPhee, a single mom from Arvada who parents two children in addition to Jonnie with her ex-husband.

Even in the best of circumstances, it can all feel precarious: The interlocking treatments provided by a long list of specialists, and the employment that depends upon funding for a special Medicaid benefit. The unknown of when Jonnie might need to go back to the hospital again for another major surgery or illness, and the uncertainty of what services will be available to Jonnie when, so long as he can receive the care he needs, he becomes an adult.

MacPhee said watching as members of Congress debate changes and funding cuts to Medicaid has been terrifying.

“I definitely carry a lot of daily anxiety right now,” she said.

But she has also been spending more time trying to educate people about Medicaid and who it covers. She talks about how there are already so many forms, interviews and administrative procedures that Jonnie’s annual renewal typically takes three months. She explains how all the pieces of it fit together. And what it would mean to her family if the pieces fell apart.

“I just wish that I could impress upon people, it’s not just a gift of money, it’s the gift of time,” she said. “It’s the gift of margin. It’s the gift of getting to experience life with my kid, who I know won’t be here for forever. I have to live with that reality every day. But I get to play Uno with him, instead of being on the phone with billing.”

“A life or death situation”

Like MacPhee, Jackie Kopelan, who lives in Longmont, believes members of Congress likely won’t vote to directly cut Medicaid for kids like her daughter.

“If anybody is going to be saved, it is going to be the children,” she said.

But, also like MacPhee, that hasn’t convinced Kopelan that children won’t possibly be affected by the changes to Medicaid proposed at the federal level.

Kopelan’s daughter Rafaella — she goes by Rafi — was born in New York City. While still in the hospital after birth, Rafi was diagnosed with a condition called epidermolysis bullosa in which the skin is so fragile, it blisters and tears when touched. The condition also causes numerous other health challenges.

Rafi needs specialized bandages — wrapped with Kopelan’s specialized care and knowledge — that can cost up to $100,000 per month. But, in New York at the time, Kopelan and her husband’s private insurance wouldn’t cover enough of them. Nor would Medicaid.

“We realized that we had to move,” she said. “We needed to be on Medicaid, and there were five states that would work for our family because for durable equipment we needed 100% paid out for her bandages.”

That decision underscores how complex the Medicaid landscape can be for families.

Though every state’s Medicaid program provides some kind of coverage for children with special health needs, exactly what that coverage is varies from state to state. Some states, for instance, don’t have programs that provide payment for parent-caregivers. Waitlists for coverage can exist, more so in some states than others.

And many of the specific programs covered are ultimately optional, meaning states in healthy budget years may cover benefits that families come to rely on, only for those benefits to be cut during lean years. For instance, in 2022 Colorado lawmakers approved Medicaid coverage for equine therapy, after families had advocated it for years. This year, that benefit was among those that lawmakers debated ending in order to balance the budget.

To Kopelan, this complexity shows how members of Congress can’t possibly anticipate all the consequences of large-scale Medicaid cuts.

“People who are making decisions are so far removed from the people that are actually going to be affected by it,” she said.

Rafi is 17 now, a teenager barreling toward adulthood. Her dream is to be a preschool teacher, and this summer she is interning at an elementary school to gain experience. She and her parents are looking at colleges, planning the next steps of her life.

In one sense, Kopelan knows well how strong Rafi is.

One day, Rafi told her mom she wanted to start doing “get ready with me” videos on TikTok, where users of the social media site post clips of their hair and makeup routines. Kopelan was taken aback, afraid people might bully her over her appearance. 

“I told her that, you know, people can be cruel online,” Jackie said. “And she said, ‘That’s OK. I’ve got thick skin.’”

Her channel, which she no longer updates as frequently, now has over 600,000 followers. One video in which she explained her disability received more than 9 million views.

But, in another sense, Kopelan also knows how fragile Rafi’s support structure can be.

Rafi will turn 18 later this year. A year after that, when she’s 19, she will have to transition into an adult Medicaid coverage program, and what will that mean? What requirements will she have to meet? What services will be covered? What cuts will have been made?

“It is really a life-or-death situation for us, and we’re not the only families who feel that way,” Kopelan said.

“It’s scary,” she said later. “It’s just really scary. We don’t know how this is going to unfold.”

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