Driven from the nursery to nursing home

Don Colburn, The Oregonian, 8/7/06 (original source )

When Angela Moe's out-of-town cousins visited recently, it didn't take long for their kids to ask, "Where's Teegan?"

"I get that question all the time," Moe says.

Moe explains that Teegan, her 4-year-old daughter, now lives at the Center for Medically Fragile Children at Providence Child Center. The next question, almost invariably, is whether Teegan will be there forever.

"It's a complicated question -- and answer," Moe says.

Teegan is one of 83 children who live in Oregon nursing homes. Their average age is 12, but their developmental age usually is measured in months.

They are at the center of an impassioned debate about whether growing up in a nursing home is ever appropriate for a child. Entangled in that question is another: whether federal Medicaid rules and Oregon's lack of support for at-home care force some families to choose institutional care for their severely disabled kids.

Young survivors

The nursing-home children range in age from infancy to 20 years. Some have genetic disorders. Some are extreme "preemies." Many have severe cerebral palsy. Some were in a car crash or nearly drowned or nearly strangled.

"Some, we just don't know," says Pat Budo, administrator of the Providence center, the only residential nursing home in the Northwest exclusively for children.

None can walk or use a standard wheelchair. Few talk. Most "eat" through a feeding tube that carries liquid nutrition directly to their stomachs through a hole in their sides. None is toilet-trained.

The population of such children is growing. Medical advances -- from drugs to infection control to feeding tubes -- have boosted survival rates from congenital disorders, trauma, and multiple and premature births. Some children at the Providence center weighed less than 1 pound when they were born.

"Ten years ago, these children wouldn't have survived," Budo says.

Four nursing homes in Oregon accept children. The Providence center in Northeast Portland holds 58. The 25 other children are scattered among three primarily adult homes: Marquis Care at Mount Tabor in Southeast Portland, Rest Harbor Rehabilitation & Extended Care in Gresham and South Hills Rehabilitation Center in Eugene.

What puts children into nursing homes is a combination of severe disability, overwhelmed families and quirky Medicaid rules.

Medicaid is the federal-state insurance program for low-income people. If states want coverage -- and federal matching money -- to go to people outside those income limits, they must apply for a waiver from federal Medicaid rules.

Oregon has two Medicaid waivers for children. One, for severe behavioral disorders such as autism, covers 140 children. The other, for "medically fragile" kids who cannot breathe without a ventilator, covers 80 children.

But Oregon's "medically fragile" waiver does not cover children who can breathe on their own, as these 83 can.

If insurance runs out, "The family faces the choice of impoverishing themselves to become eligible for Medicaid," says James Toews, assistant director of the Department of Human Services, in charge of Seniors and People With Disabilities.

"That's how kids end up in nursing homes."

"A family of one"

The financial rub for families is that the child's Medicaid eligibility depends on the parents' income. Even modest income disqualifies most families.

But a child who moves to a nursing home automatically becomes eligible for Medicaid. In effect, a child placed in a nursing home becomes a "family of one."

Under pressure from families and their advocates, the state is considering drafting a new Medicaid waiver that would base coverage of severely disabled children on their medical need, not on their parents' income.

"The goal is to keep that kid in the family home as long as we can, because it's cheaper and the children belong there," says Kathryn Weit, a policy analyst with the Oregon Council on Developmental Disabilities.

"I don't think there's any kid who needs to be in a (nursing) facility for more than a brief period of time," says Weit, whose 26-year-old autistic son lived at home until he was a teenager and moved to a group home.

Legislators take a stand

The Legislature last year directed the Oregon Department of Human Services to address gaps in home-based care for disabled children, and the state convened a work group to investigate.

"Children should not grow up living in nursing homes," the group concluded in a June report.

But Oregon's lack of in-home support to families with severely disabled children creates a conflict of interest between the family and the child, the report found. That leads some families to seek the most intensive and expensive form of care -- in a nursing home. The child's level of disability alone "rarely determines the need for services," the work group said.

"These are not families who have failed their kids," says Rep. Sara Gelser, D-Corvallis, a work group member. "It's our system that has failed these families."

"Getting to that point"

Teegan Rose -- her last name comes from her grandmother's first -- was born 11 weeks prematurely by emergency Caesarean section, with her mother's blood pressure spiking.

When she first heard her daughter cry, Moe looked up through a postpartum haze and saw a blue-dark baby. The doctors whisked Teegan away to the neonatal intensive care unit to try to save her.

What seemed like mere "prematurity issues" turned much worse. Teegan had a rare chromosomal disorder and an oddly shaped heart with a blocked valve. She was too weak to breathe or suck.

She has had seven surgeries, including two on her heart. All along, her parents assumed that if Teegan could simply get past the next surgery, she would start to catch up with other kids her age.

At a checkup when Teegan was 2 years old, after a battery of tests, a developmental pediatrician told Moe, delicately, that there comes a time when, if things aren't happening -- for instance, if Teegan doesn't reach for something -- they probably never will. The doctor warned: "We're getting to that point."

Teegan's routine was anything but. She had seizures. She had a stroke. She had holes in her heart. She couldn't keep food down, couldn't gain weight. She would stop breathing while asleep until adrenaline jolted her awake. Sometimes she stayed awake as long as 24 hours, then slept most of the next day. She was constantly in and out of the hospital.

Last fall, Moe heard about the Providence center and the possibility of respite care. Her first reaction: "You want me to leave my child with someone for two weeks? I couldn't do that."

But she agreed to tour the place.

"I started crying and didn't stop until I left," she recalls. "It's hard to be in a world where you know you need help. . . . You're afraid of letting down, as if you were giving up or wimping out."

More breathing problems and what the doctors called "gag-and-retch episodes" sent Teegan back to the hospital last October for nearly a month. For the first time, Moe began to doubt she could take care of Teegan at home.

Teegan moved to the Providence center in November -- what her mom calls "a weird letting go."

The parents visit twice a week.

"There's always this dual feeling," Moe says. "These are Teegan's family, these are kids like her. . . . But also: This is the way it's going to be. She's not going to get better.

"And in some ways, she's better off there."

Money was part of the decision.

The cost of caring for such a child at home can be overwhelming. Diapers alone cost $300 a month. A lift to help the child in and out of a bathtub may cost $400. Feeding Teegan -- the tube, the $12 cans of formula, the bags and pump -- costs $2,000 a month. At one point, Teegan was on 12 prescription drugs; now she's on eight.

Moe and Teegan's father, Darrel Lee, only recently decided to live together permanently. They share the house he owns. His savings and modest income -- he was laid off as a software engineer but works small jobs from home -- disqualified the couple from Supplemental Security Income and the Oregon Health Plan, the state's version of Medicaid. Teegan lost her monthly federal disability benefit of $400 when her parents moved in together.

"Almost always, these families are forced into the unimaginable choice of releasing their children," says Rep. Gelser, whose 11-year-old son is developmentally disabled but able to walk. Lack of state-paid support forces some families to get so worn down, she says, that they hit a crisis and decide they can't support their child at home.

"Oregon has not had a good spectrum of support care for families with severely disabled children," says Budo, the Providence center administrator. She acknowledges that some children in the center would do well in a smaller setting but says her facility fills a critical need. There's always a waiting list.

"There is not a parent whose child is here who hasn't exhausted every source of support possible," she says. "Parents sort of reach the end of the line before they bring their children here."

Teegan's mom doesn't know how she could have done without the center. "There's a nurse there at 3 a.m. if she's having trouble, and that nurse is just as fresh as the nurse who's there at 3 p.m."

Teegan went home in February after three months at the Providence center. Two weeks later, she had more surgery to restructure her intestines and implant a second feeding tube. Meanwhile, another bed at the center came open.

On April 20, Teegan became a permanent resident there.

Her mother is still ambivalent.

"You can imagine," Moe says, "there is some sadness in me."

If state benefits for home care opened up or she and Lee came into a windfall, Teegan might come home. Or not.

"Right now, Teegan's best choice is to be there," says her mother. "Maybe that will change someday. I don't know."

Don Colburn: 503-294-5124; doncolburn@news.oregonian.com