A Childhood Lost Inside a Nursing Home

Oregonian Editorial, 8/12/06 (original source )

Of the many people in Oregon who get a raw deal on health care, kids stuck in nursing homes top the list

Many of the severely disabled children who live like orphans in Oregon's nursing homes will never know the difference between August and January. They'll never run through the sprinkler, never suck on a Popsicle, never play ball in a dry, grassy field.

But some of these children could live at home with their families, if federal Medicaid rules didn't favor nursing homes over at-home care. These children deserve a better chance to live at home and experience the seasons -- rather than get shipped to a nursing home and skip straight to winter.

Oregon has a small but growing population of children who are severely disabled, as The Oregonian's Don Colburn reported this week. Children who get in bad accidents, or who are born prematurely or with birth defects, are more likely to survive today than in the past because of medical advances.

This improved survival rate is a blessing. However, parents of severely disabled children often feel unmoored and alone once they leave the hospital and discover their limits: They're sent home with a child who needs round-the-clock nursing care, who may never get better, and whose needs may not be covered by private insurance.

That alone is enough to break these parents' hearts -- not to mention strain their relationships and jeopardize their jobs.

Then the parents turn to the government for help and discover certain perversions in the law. For example, a child living in a nursing home is automatically eligible for Medicaid, the federal-state health insurance plan for low-income people. A child living at home, however, can't get help from Medicaid unless the family qualifies as poor enough.

This creates several bad choices for parents: They can deliberately impoverish themselves to qualify for Medicaid. They can go broke over time, draining their life savings and shortchanging their other children to pay for a patchwork of in-home care. Or they can try to send their disabled child to a nursing home -- even if the child may not require that level of institutional care.

"It's an agonizing decision, and it's an ongoing one," said May Lee Fay, administrator for the Office of Developmental Disability Services in the Department of Human Services. "There's not a lot of good choices in Oregon for these families."

Oregon can begin to address this problem in two ways. First, state officials can get a federal waiver that would allow all severely disabled children living at home to get Medicaid coverage, regardless of family income. This waiver application process is already under way, but its approval is uncertain.

Second, Oregon lawmakers can keep these children in mind during the next legislative session, while they fund programs for respite care and other at-home assistance. These programs help keep families intact -- and they keep children out of nursing homes, foster care and other costly places of last resort.

Some children are too sick to live at home. For them, pediatric hospitals or nursing homes are the only realistic options. But no child should be stuck in an institution, away from his or her family, for financial reasons. Oregon can improve its shaky commitment to children's health, and rebuild its faltering health-care system, by helping these children who ask for so little and need so much.