REUTERS: With no deal on children's health plan, U.S. states scramble for Plan B

NEW YORK/WASHINGTON (Reuters) - For Nancy Minoui of Portland, Oregon, and Crystal Lett of Dublin, Ohio, Congress’ failure to fund the Children’s Health Insurance Program is not some distant tale of political wrangling.

For Minoui, it’s about how to provide care for her daughter, Marion Burgess, born last Valentine’s Day with a hole in her heart. For Lett it’s about providing care for her 6-year-old son, Noble, who was born with a complex genetic disorder.

They are among thousands of parents across the country scrambling to look after low-income children whose medical care is funded by a traditionally bipartisan program, known as CHIP, that is now facing a shutdown after Congressional Republicans tied its fate to other legislative battles.

U.S. states, which administer the program but rely on federal funds, and healthcare providers are now preparing for the shutdown they had desperately hoped to avoid.

Virginia began on Tuesday sending notices to tens of thousands of families that the 20-year-old program would close by Jan. 31 without new federal funding. Connecticut is due to mail similar notices this week.

More than a dozen states, including New York and Utah, are poised to send warning notices to families by the end of this month.

Some hospitals and medical providers are encouraging patients to schedule additional doctor appointments and refill prescriptions before the deadline. Others, like the Texas Children’s Hospital, are identifying families with the most seriously ill children, including cancer patients and transplant recipients, to help obtain alternate coverage.

CHIP provides health benefits to almost 9 million children whose families earn too much to be eligible for Medicaid but cannot afford private insurance, and has enjoyed bipartisan support since it was enacted in 1997.

But this year, funding for the program expired on Sept. 30. Congressional Republicans have tied its fate to other legislative battles, including attempts to repeal Obamacare and a newer effort to overhaul the U.S. tax system.

Lawmakers had hoped to pass a five-year CHIP funding extension before they adjourned for the year. But aides in the House of Representatives and the Senate say they may not get to it until early 2018.

In the meantime, states have been spending down whatever was left of their CHIP funds, and some have received temporary relief from a $3 billion reserve.

Minnesota became the first state to run out of money altogether in November, and is keeping the program afloat from its own budget, projecting a $178 million deficit if Congress does not act next year.

Oregon expects to run out of federal money before the end of 2017, while Colorado was the first to begin notifying families of a Jan. 31 cutoff in late November.

A third of states expect to exhaust funds by the end of January, and an additional 21 expect to run out by the end of March, according to the Kaiser Family Foundation. More than 1.2 million children are expected to lose health benefits if funding is not restored in 2018.

“We are spending a ridiculous amount of time and energy trying to kick Congress in the seat of their pants to get this done,” Oregon Governor Kate Brown, a Democrat, said in an interview.


Hospitals have convened emergency meetings to see how they can salvage care for seriously ill patients, and determine their own financial hit from covering more uninsured children, according to interviews with nearly a dozen hospital officials.

“No child should be the pawn of politics,” said Dr. Judy Aschner, physician-in-chief of Children’s Hospital at Montefiore in New York City. “We provide all levels of care to children and their families, regardless of ability to pay, and will continue to do so whatever the outcome for CHIP.”

Denver Health Medical Center sent letters last week to 9,500 patients, encouraging them to schedule exams and refill prescriptions before the deadline. Dr. Meg Tomcho, a pediatrician affiliated with the hospital, plans to work additional shifts and write prescriptions for three months rather than one to accommodate families.

Jill Pidcock of Glenwood Springs, Colorado, scheduled early appointments for her two sons. She and her husband dropped their health insurance a few years ago, and CHIP has made a huge difference, particularly for her 14-year-old, who has autism.

Minoui, of Portland, Oregon, said her 10-month-old daughter may need heart surgery in the coming months.

“It’s hard enough when your child is sick and you’re waiting to see if they can get well, let alone waiting to see if you’re going to be covered,” Minoui said.

State officials have debated when to notify families, hoping that Congress would come through and spare them anxiety. Some must meet state laws requiring 30-day or 60-day advance notice of the program’s shutdown.

Lett, of Dublin, Ohio doesn’t know how she will afford care for her son, Noble, who, because of his complex genetic disorder Prader-Willi Syndrome, requires daily growth hormone injections, numerous doctor visits and multiple therapy sessions each week.

Lett works two part-time jobs in order to have flexibility for his many appointments.

“We’re holding onto the hope that they will do the right thing by our family and everybody else’s family,” she said.

DISPATCH LETTER: Letter: CHIP benefits are worth protecting

The emotional, mental, and physical toll of taking care of a child with medical needs is daunting for any parent - but the financial obligation is a challenge most middle-income families in Ohio are unable to bare. When my son, Noble, was born with a rare genetic disorder, my husband and I both worked in the non-profit world, and we quickly learned that our employer plans covered very little of the things we would need to ensure our son had adequate medical care.

Enter CHIP benefits.

Our family qualified for The Children’s Health Insurance Program (CHIP) three years ago due to the inability of our private insurance plans to address our son’s complex medical needs. CHIP benefits provide a way to receive a public health insurance plan for families who may not meet the income eligibility requirements for Medicaid, but who could also not afford or would be underinsured using a private insurance plan.

For example: without CHIP, the out-of-pocket costs for one year of our son’s therapy services (only 12 of which are covered under our employer plan), would be approximately $84,240 in 2017. That does not include our $700 monthly premium, $10,000 deductible, or $12,000 out-of-pocket maximum. CHIP benefits have allowed our son to receive the best medical care any child could ask for, without financially crippling our family. Noble attends private therapy every week and has decreased the number of specialists he sees from 13 to 4. He has had no inpatient hospital stays and continues to be healthy despite having a genetic disorder. Congress is currently facing an urgent deadline to extend CHIP as the September 30 funding expiration quickly approaches. Almost nine million children - and nearly 210,000 Ohio children - receiving coverage through CHIP are depending on Congress to take action to reauthorize the program.

However, CHIP funding has been on the docket with Congress having spent their time on the Graham-Cassidy bill. An ACA repeal bill that would have guaranteed deep cuts to Medicaid funding and ultimately ended with children losing access to health care. Senate Republican leadership announced that they will not be voting on the Graham-Cassidy proposal, but the deadline to extend CHIP funding still looms. As a society, we cannot short-change our children when the health insurance market becomes volatile. Children expect and deserve protection, regardless of their health, but especially when their health is in question.

Renewing CHIP benefits is a way we, as adults, can continue to offer that protection. It is worth it in every way to see our children thrive.

Crystal Lett

NATIONWIDE CHILDREN'S: Lett Family Travels to Capitol Hill to Advocate for Children’s Health Care Funding

As Congress continues working on legislation that could impact the health care of all Americans, the Lett family is delivering an important and timely message on Capitol Hill.

Nationwide Children’s Hospital patient, Noble Lett, 6, and his family will join other pediatric patients and families from around the country to meet with their members of Congress and share their personal health experiences, including discussing the importance of federal funding for children’s health care as part of the 2017 Children’s Hospital Association’s Family Advocacy Day, taking place July 12-13 in Washington, D.C.

At three days of age Noble was diagnosed with Prader-Willi Syndrome (PWS), a complex, multi-systemic genetic disorder with characteristic clinical features caused by a defect in chromosome 15. At a young age, Noble’s diagnosis required immediate treatment and preventative care from a multidisciplinary team of neonatologists, gastroenterologists, geneticists, otolaryngologists, urologists, endocrinologists and ophthalmologists. Noble also regularly attends physical therapy, occupational therapy and speech therapy as part of his early intervention treatment.

Because of the early diagnosis and prompt multidisciplinary care, Noble, a typical curious soon-to-be first grader, has been able to meet most of his developmental milestones. Just as remarkable, Noble has not been hospitalized since birth, a rarity for someone with PWS. 

Noble’s mother, Crystal, credits much of his success to having access to healthcare insurance coverage. Although Noble’s visits to Nationwide Children’s have thankfully decreased during the past three years, the costs of Noble’s current therapies, which include daily growth hormone injections and more than 150 physical, occupational and speech therapy sessions are eased thanks in large part to federally-funded healthcare programs like Medicaid and the Children’s Health Insurance Program (CHIP). Noble is one of more than 30 million children receiving access to pediatric services through these funding programs.

Because of government assistance medical programs for children, 95 percent of U.S. children have health insurance, including Noble. Without this much-needed funding, the Lett family would have been underinsured, responsible for high monthly premiums and out-of-pocket expenses and forced to make difficult medical decisions because of the cost of care at the time of Noble’s diagnosis.

“Thanks to Medicaid and CHIP benefits, Noble has been fortunate enough to receive quality health care that has significantly improved his life,” said Crystal Lett, Noble’s mother. 

“Ensuring that all children have access to screenings, preventative care and pediatric specialists is a national bipartisan issue of the utmost importance,” said Steve Allen, MD, Chief Executive Officer, Nationwide Children’s Hospital. “Medicaid and the CHIP program allow for children like Noble to readily access the care they need when they are young which in turn enables them to grow into healthy adults.” 

DISPATCH: Dublin 6-year-old weighs in on DC’s health care battle

WASHINGTON — Lobbyists for the health care bill are everywhere on Capitol Hill these days.

On Wednesday, one of the littlest lobbyists — 6-year-old Noble Lett of Dublin — had his say.

Noble, a first-grader at Olde Sawmill Elementary School, was born with Prader–Willi Syndrome, a genetic disorder that can cause a host of medical and developmental issues. But because he was diagnosed on his third day of life, and because the family has been able to have continual access to care at Nationwide Children’s Hospital, he looks to live a fairly typical 6–year-old’s life.

Including one that includes impatience with grownups and their boring conversations.

After meeting with representatives for Sen. Rob Portman, R–Ohio, with Sen. Sherrod Brown, D–Ohio, and with Rep. Bill Johnson, R–Marietta, Noble had had it. Visibly tired, he was ready to go back to the hotel.

No one, after all, said that hanging out with lawmakers was easy.

It was a typical reaction for a kid whose beginnings were anything but.

When Noble was born, he wouldn’t eat. Even though he was carried full term, doctors became concerned when he wouldn’t take a bottle. They ran blood tests to determine he had a genetic disorder that could cause problems ranging from speech delays to physical delays.

Thanks to the federal Children’s Health Insurance Program, his mother said, the family is able to afford the $26,000 to $30,000 in additional costs his therapy requires each year. That price tag is in addition to basic insurance costs.

In Ohio, the state administers Children’s Health Insurance and Medicaid together. Because of this, Crystal Lett, Noble’s mother, worries that a new health-care bill could cut benefits.

“If we didn’t have CHIP, I don’t know how we would meet his needs,” she said, using the acronym for the program, which is due to be reauthorized.

She said her employer-based insurance would cover 12 therapy visits a year. Noble needs around 150.

The coverage has also meant that Noble can avoid long term some of the problems his genetic condition causes; the therapy, she said, is preventative.

Crystal Lett said she’s also worried about proposals to allow states to accept block grants for Medicaid.

A bill that passed the House in May capped Medicaid funding, which covers some 30 million children. She worries that as the state tries to deal with the new law, Children’s Health Insurance will be lumped together Medicaid. There are, she said, too many unknowns.

“For us, it’s the difference between being middle class or not, keeping our house or not,” she said.

REWIRE: Ohio Parents Working Multiple Jobs Still Can’t Afford Care Without CHIP

On September 30, funding expires for the Children’s Health Insurance Program(CHIP), and Congress must decide whether and how much to continue supporting the program. This budget decision has added weight this year because of the GOP-controlled government’s proposals to slash federal spending on public programs, including Medicaid. Signed into law as part of the Balanced Budget Act of 1997, CHIP allowed millions of children without health insurance to gain coverage thanks to income requirements assisting families earning above the eligibility range for Medicaid.

Funding cuts or delays would leave the states that offer health care by combining CHIP and Medicaid and the states that operate CHIP separately struggling to provide well-child, well-baby, dental, and emergency services to millions of children. Appalachia is especially at risk; Ohio, North Carolina, Virginia, West Virginia, and Kentucky are states projected to exhaust CHIP funding by 2018.

Among those who would be directly affected by the budget cuts are the three young children of Crystal Lett from Columbus, Ohio, including her 6-year-old son, Noble, who was born with a rare genetic disorder called Prader-Willi syndrome (PWS). PWS “results in low muscle tone, global developmental delays, and an insatiable appetite,” Lett explained to Rewire. Treatment requires occupational, speech, and physical therapies along with daily injections of Human Growth Hormone. “Even with a clean bill of health thus far,” Lett said, “the costs associated with his care are massive.”

Both and Lett and her husband work and have always worked—Lett currently works two jobs—but rely on CHIP “due to the failure of health insurance companies to provide adequate benefits to working families that address both simple and complex medical conditions,” Lett explained. “We pay an exorbitant amount of money to these companies and yet still are not able to access and afford the care that we need.”

Lett said, before CHIP: “if you add[ed] up the cost of our premiums, out-of-pocket maximum, and not-covered therapies, we were spending approximately $53,000 a year on health care—and quite honestly, that estimate is wildly conservative. That price is not sustainable for a young, middle class, family with young kids—even with dual income.”

That’s especially true southeast of Columbus in Athens, the poorest county in Ohio. In a state with 88 counties, Athens County had the 16th highest percentage of children covered by Medicaid and CHIP; 40 percent of Athens County children received coverage from 2011 to 2015.

Athens is small and rural, tucked away in the Appalachian foothills, with brick streets, hiking paths, and a state university: Ohio University. But the county faces a range of problems, among them: unemployment, underemployment, and low-paying, low-benefit jobs. Many jobs operate seasonally, with some of the town shutting down in the summertime, when the university students leave.

Melissa Wales, executive director of United Campus Ministry and Athens resident since 1998, said her region needs CHIP because “most jobs are part-time, service positions without health insurance.” There simply isn’t enough work—and the jobs that exist don’t come with benefits such as employer-sponsored health insurance.

Lett said, “I think one of the things that has been propagated ad nauseam about Medicaid or CHIP recipients is that the people receiving the benefits are not working or are lazy …. This is just not the case. Many families relying on CHIP do so because they have a child with an illness or medical complication that results in increased health care costs. These families work extremely hard, and on top of that, are dealing with the pressure of providing for a loved one who is ill. Laziness is not a factor in these family’s lives—they are just trying to survive.”

Families in Athens have a hard time accessing care, let alone affording it, Wales said. “Lack of transportation in our mostly rural area, centralization of health clinics and hospitals . are all barriers for children and families in our region.”

Combined with lack of affordable care in places like Athens, there is urgent need. Wales also spoke to the high rates of diabetes and cancer in her community, and the difficulty of finding fresh, healthy food. The cost of transportation to health-care providers—sometime a great distance away—adds to parents’ worries, as does the fear that they may not be able to pay for treatment for their children, especially for chronic conditions.

Before CHIP, the Lett family paid “almost $1,000 a month in health insurance premiums. On top of that, our deductible was $12,500 and our out-of-pocket maximum for the year was $15,000. We would hit our our-of-pocket max before the year was even half over.”

Noble, Lett’s son, is doing well now, thanks to regular therapies and medication, treatment the family couldn’t afford without CHIP.

CHIP provides health care for 9 million children nationwide and in conjunction with Medicaid provides coverage for more than half of families of color.

Lett said: “If Congress were to discontinue funding for CHIP, many families, like ours, would find themselves making choices between selling their homes or providing their children with the therapy/medical services they need in order to thrive. That is not a choice any parent should ever have to make.”