These kids need feeding tubes and breathing machines. Their health care funding may be at risk.

June 30--The momentum in Congress to repeal the Affordable Care Act next week has expanded into a comprehensive national health care overhaul that is likely to sweep up patients who have nothing to do with Obamacare.

Among those who could be deprived of medical services are nearly 2,400 "medically fragile" children in North Carolina whose ventilators, oxygen tanks, feeding tubes, catheters and round-the-clock nurses are covered by a little-known Medicaid program available to middle-class families with private health insurance.

The program pays for services that private insurance doesn't cover, allowing parents to work and the children to attend school.

The special program for these sickest of children, called the Community Alternatives Program for Children, or CAP/C, is not identified for cuts in the Senate health care proposal, and it's not likely the program would be eliminated. Both of North Carolina's Republican senators say they support the program.

But Medicaid cuts account for the largest federal spending reductions in the Senate's ACA repeal plan. The bill would cut Medicaid spending by 26 percent by 2026 and by 35 percent by 2036, according to a analysis by the nonpartisan Congressional Budget Office.

Parents and program advocates say that if Congress agrees to aggressively rein in Medicaid spending, state health officials and state lawmakers will be forced to make painful medical decisions that could result in cuts to funding and services for "medically fragile" children. Caring for one seriously ill child in the program costs an average of $80,000 a year in North Carolina, compared to $4,700 for a typical Medicaid beneficiary in the state. That could make the program an easy target for cost reductions, parents fear, because the amount of money required to treat one "medically fragile" child can be used to provide health care for 17 kids on Medicaid.

"Our kids aren't cheap," said Jenny Hobbs, a Pfafftown mom near Winston-Salem who works as an HR manager. Three of her four children are "medically fragile."

Madison, 7, Meredith, 12, and Michael, 14, all have mitochondrial disease, a progressive disorder that can cause muscle weakness and pain; seizures, vision loss and hearing loss, learning disabilities and organ failure, among other complications. The condition has no cure. Last year, Madison was also diagnosed with melanoma. All three use feeding tubes for medications and supplemental feedings. Meredith and Michael need ventilators to help them breathe, while Madison requires an oxygen tank. All three of the children have their own designated private duty nurse who accompanies them to school and cares for them overnight.

Hobbs estimates that the combined cost of their nursing care alone is more than $600,000 a year.

She said nursing hours could be one of the first services curtailed if funding for the nation's Medicaid program is reduced.

"If Medicaid dollars decrease, tough decisions are going to have to be made," she says.

Cuts up to the state

In North Carolina, the federal government reimburses the state for two-thirds of its $13.5 billion Medicaid budget, creating a multibillion-dollar liability that state taxpayers must cover. Medicaid spending in North Carolina grew 18 percent in five years -- from $10.5 billion in fiscal year 2011 to $12.4 billion in fiscal year 2016. The Senate health care bill proposes to end Medicaid's open-ended funding and cap Medicaid expenses each year.

Sen. Richard Burr's spokeswoman Rebecca Glover said Burr is a longtime supporter of children with disabilities and "doesn't support cuts to this program." She added that the Senate health care bill requires states to submit information on the number of medically fragile children served by Medicaid to improve services.

Dave Richard, director of the N.C. Division of Medical Assistance, which runs Community Alternatives, said the program already includes a requirement to submit information on patient enrollment.

Richard worries that cuts to Medicaid will cause hard choices. "You run the risk that will ultimately pit programs against one another in terms of where not to spend or where to spend less," he said. "If you put artificial caps on a state's ability to draw down federal money for Medicaid, it certainly would impact our ability to expand our slots if we were bumping up against those caps."

The office of Sen. Thom Tillis said that Medicaid spending needs to be brought under control, but singled out the Community Alternatives program for praise.

"We must protect and provide for the most vulnerable in our state, which includes medically fragile children who require specialized care," the Tillis statement said. "The safety net needs to be there for them."

Established here in 1992, the Community Alternatives program is one of a number of Medicaid programs that are exempt from Medicaid's poverty qualifications, and some of these programs already lack state funds to provide services for all who want them.

Community Alternatives, with a budget of $98 million in North Carolina, has 2,369 enrolled and a capacity to accept 4,000 children. Under Medicaid rules, the program has to spend less on caring for the children at home than it would cost to have them institutionalized in nursing homes, hospitals or other facilities. A number of children enrolled have so many health complications that they don't live to see their 18th birthday, Richard noted.

He said children with debilitating conditions are much better off at home with their families than in institutions, and the cost is significantly cheaper -- about $50,000 cheaper per child in North Carolina's program. In the less demanding medical cases, the private duty nurses aren't required on nights and weekends when parents are home to care for their children.

Last year, however, the Division of Medical Assistance became concerned about program costs and proposed reducing in-home nursing hours and cutting other services in Community Alternatives. Faced with potential reductions, the parents rallied and not only saved the program but persuaded the agency to expand it. Among the changes were expanding slots from 2,300 to 4,000 children, and raising the average maximum cost per child from $89,000 to $129,000, when the Division re-calculated the annual cost of institutional care.

Dealing with the needs

That experience alerted the parents that Community Alternatives is not inviolable and will require organizational acumen to prevent budget cuts.

Hobbs was among the parents who founded Advocates for Medically Fragile Kids, a group that counts more than 2,600 members on Facebook and is now working to save the program from congressional cuts in the ACA repeal effort. The parents have created a book featuring pictures and stories of their children, which they have distributed to lawmakers at the General Assembly in Raleigh and Congress in Washington. In March, Hobbs was in Washington to talk to several legislative aides from North Carolina's delegation.

As part of her Washington lobbying trip, Hobbs wrote a letter in March to Burr, thanking his office for intervening in 2010 to help her family and two other families qualify for Medicaid waivers that allowed them to enroll in Community Alternatives. Hobbs, a Republican, also urged Burr to consider the implications of repealing the Affordable Care Act, which banned insurers from rejecting people with pre-existing conditions and ended insurers' practice of capping the amount they paid for medical services.

"If the pre-existing conditions clause is eliminated, my children are a huge liability to any insurance company now and I fear how they would ever quality for private insurance on their own as adults," Hobbs wrote. "If the lifetime maximum is lifted, I guarantee they have already exceeded any liftime max or quickly would if it was reset."

Hobbs works part-time from home and her husband, Ernie, travels half the week for his medical sales job. Because the family has health insurance through Ernie Hobbs' employer, their insurance policy handles much of the childrens' basic medical expenses, including medicines and hospitalizations. For that reason, Medicaid pays the family's premiums of $300 a month. In the first five months of this year, the Hobbs' insurer, UnitedHealthcare, has paid more than $230,000 in medical costs for the three children, Jenny Hobbs said. If the family didn't have the private insurance policy, Medicaid would have had to pay the full cost.

The primary cost to Medicaid is for private duty nurses, modifications to homes and cars, and insurance deductibles. For the average North Carolina family in the Community Alternatives program, Medicaid pays $80,000 a year.

The Hobbs' main out-of-pocket health expense for Madison, Meredith and Michael is between $800 and $1,000 a month for over-the-counter vitamins and supplements, which are recommended by their doctors to slow the advabce of the degenerative disorder.

Without the Medicaid funding, especially to pay for the nurses, Jenny Hobbs said the family would be forced to choose between sending the children away to an institution or keeping them home and going bankrupt.

"I would choose bankruptcy," she said. "An institution is certainly not an environment for a child to be in. They would have a horrible quality of life and they would have an earlier death."

Lori Palen could also be forced to make adjustments if Community Alternatives payments to families are cut.

Palen, a development psychologist, and husband Wes Yellin, a chemical engineer, have a 5-year-old son in the program. Tommy weighs 30 pounds and has the intellectual development of a 2-year old, Palen said. Tommy has a rare genetic disorder that can cause heart problems, intellectual disabilities, physical disfigurements and carries a high risk of cancer. He has had four operations since he was born, including spinal cord surgery. He is awaiting a fifth operation to treat glaucoma, which can lead to blindness.

Tommy requires a feeding tube, oxygen tanks, speech therapy and seven medications.

"Daycare is not going to take him with oxygen and a feeding tube," Palen said.

Palen said she has lost count of how many days Tommy has been hospitalized. Last year he almost died from a lung infection and spent weeks in the hospital, she said.

The Cary family spends nothing on Tommy's medical care because of the Health Insurance Premium Payment Program within the state Division of Medical Assistance, which pays for Tommy's health insurance premiums through Blue Cross and Blue Shield. Medicaid picks up Tommy's nurse and other costs, such as his oxygen machine, Palen said.

When he sleeps overnight, Tommy is hooked up to a feeding pump that supplies the child with formula and water. Despite his severe impairments, Tommy's condition does not require overnight nursing care.

The couple has taken advantage of their nursing allotment, called respite care, to make an overnight trip to New Bern and to travel to San Francisco for five days without their son. Beyond that, the family rarely travels because of the logistical headaches involved in hauling combustible oxygen tanks, a feeding pump, electrical chargers and other items.

Their home-care nurse comes five days a week during the day and accompanies Tommy to pre-school. This fall the nurse will accompany Tommy to kindergarten.

"The nursing allowed us to get back to life," Palen said. "It allows me and my husband to be out of the house at the same time."

John Murawski: 919-829-8932, @johnmurawski

___

(c)2017 The News & Observer (Raleigh, N.C.)

Visit The News & Observer (Raleigh, N.C.) at www.newsobserver.com

Distributed by Tribune Content Agency, LLC.