Nursing Shortage Hampers Home Care for Disabled

There’s a green garland strung between two IV poles, a lighted angel and some taped-up Christmas cards. But there is no Christmas cheer in Sara Granda’s room at the rehabilitation hospital.

All she wants for Christmas is to be home with her family.

But because her home health care agency has dropped her, citing a shortage of nurses, that’s the one wish that can’t be granted. Instead, Granda, 20, who was paralyzed in a car accident the summer after her high school graduation, may soon end up in a nursing home among primarily elderly people.

Granda is among the ranks of disabled, elderly and recovering hospital patients feeling the impact of a nationwide nursing shortage in a very personal way.

In California, the demand for nurses outstrips the supply by 8% to 10% because of factors including retirements and dwindling nursing school enrollment. According to the Dartmouth Atlas of Health Care, California ranks second to last in the United States in its ratio of nurses to population.

As trained nurses see their employment options multiplying, lower-paying home health care often is not their first choice.

Although there is no way to quantify how many patients seeking independent living arrangements have been affected, advocates say stories like Granda’s spotlight a disturbing trend.

“This is a child who should be home with her family; a child who has gone through an incredible, awful trauma,” said Pat McGinnis, who directs a nursing home reform group based in San Francisco. “I see tragedy every day of my life, but this breaks my heart.”

Just a few months ago, Granda’s wish to be home at Christmas seemed perfectly reasonable. This time last year, she had moved back to her family’s house in the Central Valley town of Davis. A combination of public and private insurance paid for the round-the-clock nursing care she needs because she is hooked to a ventilator.

Granda was able, with assistance, to bake cookies, Christmas shop at the mall, complete her community college finals, go to church services and entertain friends at home.

But unable to find another nursing agency to take her daughter on after the cancellation, her mother, Beverly Granda, was forced to have Sara temporarily transferred to the Santa Clara Valley Medical Center’s rehabilitation center Nov. 8. She turned 20 there. She celebrated Thanksgiving there. She dropped her two community college classes. Days turned into weeks and still no solution appeared.

“Oh my gosh, my whole life’s at home!” she said. “My family, my friends, my school, any activity, any mental stimulation.”

Hospitals report that they are keeping patients longer because they can’t arrange home nurses. Home health agencies report long waiting lists. And sad stories are popping up all over the state.

In Los Angeles, a disabled man remains in a nursing home after his mother who helped care for him died and his home health agency of five years was unable to find a nurse to take her place. In Berkeley, a disabled advocate with multiple sclerosis is days away from losing his part-time nurse, an integral part of the home health system he has patched together.

“That fills the gaps and I can’t get along without it,” Blane Beckwith said. “It’s a real crisis situation.”

Granda’s story is particularly poignant. She was a happy and popular 17-year-old when her accident happened in the summer of 1997. She had just finished classes at Davis High, attended two senior proms in a red satin dress and was preparing to head off to Cal Poly San Luis Obispo to study international business.

As she and her older brother returned from having her tires fixed, Granda lost control of her car, causing it to flip three times. Her brother sustained cuts and scrapes. She remembers waking up days later in the hospital and knowing something was terribly wrong.

Her spinal cord had been crushed in two places. She spent months in a hospital recuperating and learning to live with her disability, then months more as the sole teenager in a Sacramento nursing home while her mother tried to arrange home health care with private nurses.

Home health agency representatives say that for the past couple of years they’ve found it tougher and tougher to compete with the better benefits and signing bonuses offered by hospitals.

At the same time, demand for home nursing is rising along with an aging population, advanced medical technology that allows patients to leave the hospital sooner and recent state legislation freeing up government nursing home payments for home care by nurses and home health aides.

Nor is there an end in sight to the problem. A recent study by UC Irvine estimates that by 2002 demand for home health nurses will increase by 41% for vocational nurses and 11% for registered nurses.

“I feel I’ve almost been penalized for establishing broad rights to home health care,” said Marilyn Holle, senior attorney with Protection and Advocacy in Los Angeles, a law firm specializing in disabled rights.

Patients say that the shortage has created a providers’ market, in which companies can pick and choose their cases. That leads to discrimination, they fear, against those whose care is more complex, who are more demanding and who rely on state Medi-Cal, which even after a recent raise typically pays less than private insurance.

Though Sara Granda’s agency has declined to talk to the media, citing patient confidentiality, in a Sept. 17 letter about canceling her services, the agency’s administrator cites both the nursing shortage and nurses’ reports that Granda was “demanding, manipulative and unappreciative.”

Several concerned state legislators say that they may introduce bills next month aimed at alleviating the problem by requiring a longer cancellation notice (to 60 days, up from the current 30), taking some pressure off the nursing industry by speeding up implementation of a new law that allows some less severely disabled Medi-Cal recipients to opt for home health aides instead of nurses and even creating rules against patient abandonment similar to those that govern hospitals.

The latter is the most popular among disabled advocates but the least likely to pass legal muster, according to attorneys and government officials alike.

“What we can’t do is compel a nursing agency to go in and provide the care,” said Marie Vann, chief of the state’s in-home program. Vann estimated that she faces a nursing shortfall of about 20% in the small state programs she runs.

Doing so, says the state’s top home health care lobbyist, would further tax an already stressed industry, which in California has shrunk from 1,440 to 880 agencies in the past few years.

Even if you could force them to take on hard-to-staff cases “if there wasn’t a nurse to staff the case, then what have you done to the patient’s safety?” asked Kerry Rodriguez Messer, policy director of the California Assn. for Health Services at Home.

What’s more, none of the legislative changes will occur in time to help Sara Granda.

On Tuesday, Beverly Granda received a letter informing her that preparations are being made to discharge Sara from the rehabilitation hospital, probably to a nursing home. That is the fate Sara fears most.

“Been there. Done that,” she said, rolling her eyes.

So Beverly Granda is appealing to other nursing agencies, seeking legal advice from advocacy organizations and even, since she is a registered nurse, investigating the possibility of starting her own home health firm.

But, she worries, “it’s going to take a miracle to get her home.”