James McLelland sits at the kitchen counter, a pile of plastic dinosaur bones spread in front of him, and chooses a saber tooth tiger – missing a tooth – to dip in a gooey substance.
It’s messy, but a good activity to keep James, 6, busy while his mother, Jenny McLelland of Clovis, talks about the Senate health care bill that she worries could upend a system that helps keep her son alive.
James has a rare form of dwarfism that is identified by three multisyllable medical words. The genetic disorder – brachtelephalangic chondodysplasia punctata – affected the growth of cartilage in his airways.
At birth James needed help to breathe. He spent the first month of life in the neonatal intensive care unit at Lucile Packard Children’s Hospital Stanford. He spent another eight months in a special pediatric skilled nursing facility for babies and children in the Bay Area. A third of babies born with James’ condition die before their first birthday.
James still depends on a tracheostomy (a hole in his throat) to make it possible for him to breathe during the day. He relies on a ventilator at night because he tends to stop breathing when he’s in deep sleep. He has to be tube fed five times a day (he’s being taught how to eat solid food), and he must follow a strict regimen of respiratory care to stay out of the hospital and to be at home with his parents and 7-year-old sister, Josephine.
Every middle-class family is one medical issue away from bankruptcy.
Jennifer McLelland, Clovis mother of James, a medically fragile child
But in many ways, James is a typical little boy. He is obsessed with Transformers, and has built dozens from kits; Optimus Prime is a favorite at the moment. He fights as much as he plays with his sister, and he has to be coaxed to do his homework.
As James chatters to himself at the kitchen counter, his mother says he’s a miracle. He’s beaten the odds: “He definitely has a lot of things wrong with him, but he’s upright and talking and going to school.”
But it costs a lot to keep James healthy.
His care is paid for by private insurance, Medi-Cal and by California Children’s Services, a state program for children and youths with severe medical conditions.
It’s unclear what revisions Republican senators could propose this week or next to the Better Care Reconciliation Act, but the McLellands say the bill that has been introduced would threaten Medi-Cal as well as private insurance coverage for James and children like him. Supporters of the bill disagree, saying it would not deny care to medically vulnerable children and other medically needy people.
Private insurance not enough
The McLellands are a middle-class family. Justin McLelland, 39, is a Lemoore High School PE teacher and his wife is a former Fresno police officer who retired after an on-the-job shoulder injury.
The family’s private insurance pays for the majority of James’ medical expenses – but not all. Most families with a child with a severe medical conditions end up seeking help from Medi-Cal and from California Children’s Services for medical expenses not covered by their insurance.
“Every middle-class family is one medical issue away from bankruptcy,” Jennifer McLelland, 36, says. “And the Affordable Care Act has made it possible for our lives to continue to function with a disabled, medically fragile child.”
Medi-Cal, the California version of Medicaid, is jointly funded by the federal and state government and provides services to adults and children with low incomes, as well as for adults and children with disabilities. In the central San Joaquin Valley, it is the insurance plan for nearly 50 percent of the population.
The proposed Senate bill to repeal and replace the Affordable Care Act would change the federal government’s financing formula for Medi-Cal. Under the Better Care Reconciliation Act, a cap would be put on the amount of money the federal government would contribute to Medi-Cal. Currently, the federal government pays a share of the costs incurred to the program with no per capita limit.
According to an analysis by the California Department of Health Services released last month, the proposal in the Senate would cost the state $3 billion in 2020, with an annual cost growing to $30.3 billion by 2027. And the total cost from 2020 through 2027 would be $114.6 billion.
But there is support for restructuring Medicaid funding.
Jason Pye, vice president of legislative affairs for the conservative Washington-D.C.-based group FreedomWorks, Inc., says the Senate bill’s modernization of Medicaid “is one of the policy proposals we like best about the bill. Indeed, it’s a dramatic improvement over existing law because it changes Medicaid from being an open-ended government program.”
The proposal is a necessary change to ensure the sustainability of Medicaid, Pye says.
Jennifer McLelland says medical care for children with multiple medical problems is so expensive that Medi-Cal often is the only option.
A special Medi-Cal waiver allows middle-class families to get Medi-Cal to keep medically fragile children out of institutions.
Private insurance paid for only 100 days of the eight months of nursing home care that James needed when he was discharged from the intensive-care unit a month after his birth. The care cost about $1,000 a day, she says.
She brought James home when he was 9 months old, and Medi-Cal paid for in-home nursing. Without the support, the nursing home would not have released James to her care, she says. “Only Medicaid pays for actual round-the-clock home nursing for disabled kids.”
The McLellands don’t have an in-home nurse at the moment, and they aren’t getting a lot of sleep. They’re up sometimes eight to 10 times a night to check on James and to respond to alarms on the ventilator and on a pulse monitor.
“We’re getting by because I’m tough and I power through all of this,” Jennifer McLelland says. “And I’m a stay-at-home mom. We’re figuring it out, but it’s certainly not a good idea, and most families like ours cannot survive.”
It’s been difficult to find nurses because Medi-Cal doesn’t pay them enough to compete with what private industry offers, Jennifer McLelland says. If federal funds to Medi-Cal were to be cut, it could reduce pay further, she says.
James helps with his care
Besides the nighttime vigil the McLellands keep over James, they also have to suction mucus from the tube in his windpipe and replace it. Now that he is older and can cough up mucus, he needs to be suctioned only a few times a day. When he was a baby, he had to be suctioned up to 80 times a day.
James agrees to sit for a recent tube replacement. His reward: 20 marshmallows.
He’s old enough to help his mother, and he pulls the tube out. Examining residue on the plastic, he points to the tip and says, “it’s clogged all the way over there.”
James’ speech is remarkably clear because of a special valve that fits on the end of the tube in his throat, and because he has had hearing aids since he was 2 years old and began to speak.
California Children’s Services pays for the hearing aids. His latest pair cost $8,000. Private insurance paid $700 and the state program picked up the rest.
The state has not analyzed the fiscal effect of the proposed Senate bill on California Children’s Services. But it assists approximately 189,000 children and youths statewide and about 70 percent are also eligible for Medi-Cal.
The idea that we could keep paying for our health insurance and that he would lose it because of lifetime limits is terrifying and unfair.
Jennifer McLelland, Clovis mother of James, a medically fragile child
But Medi-Cal and California Children’s Services are not James’ primary insurer. The lion’s share of his medical care is paid by the private insurance the family has through the Lemoore Union High School District.
The McLellands’ say the Blue Cross plan pays for most of the day-to-day costs, including prescriptions, doctor visits and hospitalizations. And it provides the expensive equipment – the ventilator – and a vibrating vest that James wears twice a day to unclog mucus in his lungs.
The vest cost about $18,000, Jennifer McLelland says.
Pinning James down for a 30-minute vibration session isn’t easy. The 40-inch tall boy is in near-perpetual motion. He protests on an evening last week when his dad tells him to put on the vest. “I don’t want to shake.”
A loud hum signals the vest has been turned on. James’ entire body jiggles. He plays with Transformers, lifts a shaky hand to take a bite of a Nutella sandwich and sips a protein drink through a straw. It took practice, Jennifer McLelland says, but he’s able to drink and eat while being shaken.
The vibrating vest is crucial to keep James’ lungs clear, but the McLellands say the cost of such medical equipment can add up quickly, and they are worried that the Senate bill would create a pathway for insurance companies to impose limits on lifetime and annual benefits, practices that were abolished under the Affordable Care Act..
The McLellands say a $1 million lifetime limit may sound like a high threshold to reach, but it’s not for a child such as James. He blasted through that limit within a couple of months of birth.
And costs for his care remain steep. When James is healthy, it costs about $4,000 a month. If he’s sick, the amount can jump to more than $15,000 a month, Jennifer McLelland says. If James is hospitalized in intensive care, the cost can be more than $3,500 a day.
“We’re scared,” she says. “The idea that we could keep paying for our health insurance and that he would lose it because of lifetime limits is terrifying and unfair.”
Effects not clear-cut
There’s debate on just what effect the Senate bill would have on lifetime benefits. The bill would allow states to use waivers to change the essential benefits that insurers must provide, such as hospitalizations, pregnancy, childbirth and mental health services. Some believe that would open the door for insurance companies to go across state lines and choose a different state’s weaker essential benefits and lead to insurers imposing lifetime and annual limits.
Victor L. Gunderson, a Fresno employee benefits consultant at Der Mauouel Insurance Group, says it’s unlikely insurance companies based in one state would adopt another state’s weaker essential benefits package. He doubts employers would change policies to include lifetime limits. And he is convinced that California, which embraced the Affordable Care Act, would not allow it. “In California, I would not be concerned.”
But Anthony Wright, executive director of Health Access California, disagrees. California did not have protections against lifetime limits before the Affordable Care Act, he says. “Of course we would fight this. We would not want to go down this path, but there would be immense pressure to do this,” he says. “Policymakers will have precious few options of how to bring down premiums.”
Even now, with the availability of private insurance, Medi-Cal and California Children’s Services, the McLellands estimate they spend $11,000 a year out-of-pocket for drugs and supplies.
“Our lives work because we have employer-sponsored health insurance with James. Any health care bill that brings back lifetime limits will destroy our lives,” Justin McLelland says.
Jennifer McLelland says they are fortunate to have a middle-class income that allows them to afford insurance, and for her to stay at home with James. But they pay monthly insurance premiums, she says.
She finds it hard to understand but says: “There are people who believe if you have a disabled child, you should just be poor.”
The McLellands have felt compelled to speak out for families who are raising children with severe medical conditions. They have attended protests against the House and Senate health care bills and Jennifer McLelland wrote an opinion column that appeared in The Bee in May.
Justin McLelland says talking about the health care bills is not always pleasant conversation, “but I don’t have the opportunity to just turn that off,” he says. “That would be awesome not to have to worry about my kid for every single day, for every single thing.”
For the past three years, James has been extraordinarily healthy. He has not been admitted once to the hospital for pneumonia. But that can change in a day if his lungs fill up with fluid, Jennifer McLelland says.
“We’ve just been very lucky.”.
James looks up from the plastic dinosaurs dripping with goop. He has overhead his mother, and responds.
“Yeah, very lucky.”