Medically Fragile Kids Could Lose Under Utah’s Medicaid Overhaul (UT)
June 15, 2011
Families everywhere are feeling the pinch of rising food prices. But imagine if your monthly grocery bill was $2,950.
That’s how much it costs to tube-feed Jacob Hansen, an 11-year-old with cerebral palsy and cystic fibrosis — not including the $1,400 for the drugs he needs each month to digest the vitamin-rich formula.
“And that’s just the beginning,” said Jacob’s mom, Jodi Hansen, who worries about the extra costs that Utah’s Medicaid reform plan will impose on some parents of medically fragile kids.
The state-federal program isn’t just for the poor. It’s the health safety net for 4,600 medically needy children in Utah who, advocates say, can least afford to be guinea pigs for the state’s cost-cutting experiment.
Some come from middle-income families who meet the program’s poverty limits by “spending down” their incomes, or paying portions of their medical bills. Others, like the Hansens, use Medicaid as supplemental coverage to fill gaps in their private health policies, which widen each year as insurers pass soaring costs onto consumers by gutting benefits and hiking premiums and co-payments.
Now Utah proposes bringing some of those same cost-containment tools to bear on Medicaid.
“It’s one more thing that you have to worry about, one more thing you have to fight,” said Hansen.
The 43-year-old working mother of two was among a handful of parents protesting the changes at public hearings last week. Some concerns were born from confusion over the vaguely worded reform blueprint, which the Utah Department of Health will fine-tune before submitting it for federal approval on July 1.
Hansen, of Eagle Mountain, was relieved to later learn that Jacob is among a select few who won’t incur extra charges. But she fears for other families “who have it worse than we do.”
The blueprint calls for realigning provider incentives by moving Medicaid patients into managed care networks. They would be paid a set amount per-patient and would have to absorb any losses.
The goal is to encourage providers to keep patients healthy and out of the hospital, instead of just giving more tests and treatments, said the plan’s architect, Sen. Dan Liljenquist, R-Bountiful. “We’re telling providers: You’ve got to be creative. Here’s how much money the state has. We expect you to provide care with the same or better outcomes, but at a lower cost.”
But if anticipated savings don’t materialize, Utah proposes to ration care by cutting services. Also, providers would be free to charge patients $40 deductibles and co-payments ranging from $15 for inappropriate use of emergency rooms to $220 for hospital stays.
The charges are supposed to encourage patients to take responsibility for their health, but advocates fear they will cause some to forgo needed care. And since seniors and the disabled in nursing homes are excluded from the reforms, children and young families will bear the brunt of those cuts and costs, they say.
“That seems unfair. We need to remember that these families could be choosing a much more expensive way to care for their children [in institutions],” said Kris Fawson, of the Legislative Coalition for People With Disabilities.
Advocates want patient safeguards and quality measures strengthened to ensure providers don’t skimp on care. Some are calling to exclude medically fragile kids altogether.
“At lea st consider setting up some kind of payment plan,” said Tina Persels at Utah Family Voices, a support network for parents of chronically ill and disabled kids. Her son Adam, born premature and brain injured with cerebral palsy, exceeded the $1 million lifetime cap on the family’s health policy in nine months.
Parents say they don’t expect a free ride, but they wonder how the type of managed care that Utah envisions would work for children who see more specialists than primary care doctors.
Christine Evans of Tooele says her daughter Camryn, 11, has had more than 50 surgeries, half of them to position shunts that keep her brain from swelling.
“Our private insurance doesn’t cover everything. At more than $10,000 a pop the costs are inconceivable,” said Evans of the operations. “It’s not my favorite thing to whip out the Medicaid card. But it’s such a huge blessing. It’s one less thing we have to worry about.”
Under Utah’s reform, out-of-pocket expenses would never exceed 5 percent of a family’s gross household income. But that’s little comfort to Hansen, for whom the mere prospect of shouldering more is a deal breaker.
When she’s not working at a “very flexible part-time job,” she’s feeding, dressing and dosing Jacob, changing his diaper or hooking him up to a special vest that jiggles his upper body to loosen mucus in his lungs.
Last flu season sent Jacob to the hospital three times to be treated for pneumonia. He’s scheduled to have two hip surgeries in a few months.
Her husband, Mark, works for a small business, which offers health coverage, but lives in fear of being let go due to his family’s medical costs. The pressure also gets to Hansen’s oldest son, 13-year-old Brendon.
“He’s been really sweet about helping his brother,” said Hansen. “But when he was 5 he said, ‘Mom what am I going to do if you and dad die? How am I going to work and go to school and t ake care of Jacob?’ ”
It helps, said Hansen, “to keep things as normal as possible,” which means investing spare income on wheelchair lifts, ramps and other improvements to keep Jacob as mobile and self-sufficient as possible.
Insurance doesn’t cover all of it, such as the $26,000 in physical therapy they had to charge to credit cards in 2003. The unpaid bill has hurt their credit. But it was worth it, said Hansen.
“Jacob now is able to drive a power chair, play video games and type on the computer. You do what you have to do. For us, these treatments aren’t optional.”