More MS news articles for Aug 2001

For the disabled, a lack of at-home care

Advocates say the shortages are real and severe. For families of those affected, it means life changes. A Pa. official called problems "sporadic."

Saturday, August 11, 2001
By Ovetta Wiggins

Lori Smith doesn't like the conflicting messages she says the state is sending her and other working parents of disabled children.

On the one hand, the state encourages families to keep their loved ones at home. But on the other, she says, it doesn't provide them with the support they need to do that.

For nearly a year, Smith's 10-year-old son, Zachary Goebel, didn't receive the home health-care service the state was supposed to give him. The agency contracted to furnish the care said it couldn't send an aide to Smith's Coatesville home because there just wasn't one available.

Doctors said Zachary needed 42 hours of care a week. But between September and the end of July, the agency could only provide about 40 hours of coverage each month.

"It's played havoc with my family," Smith said.

Nationally, parents of the disabled and children of the elderly are complaining about the availability of home health-care workers. The shortage in Pennsylvania and New Jersey has left many families struggling to provide the care their loved ones need.

"We get these calls all the time," said Joe Scullin, director of social services for United Cerebral Palsy in the Philadelphia region. "It's not unusual to get the calls for this about a shortage of employees. I just got two today. It has become a very real issue."

While shortages have been reported in recent years, advocates say the problem seems to be worsening.

An aide would show up at Smith's home one day. But two days later, she'd get a call saying there was no one to cover the shift.

Advocates for the disabled say the scenario sounds familiar.

"It's people not showing up, lateness and last-minute cancellations that make it difficult for folks to carry on a normal life," said Michael Campbell, the managing attorney for the Pennsylvania Health Law Project in Philadelphia.

Smith, a corporate estimator, eventually cut her hours at work, dashing home at 2 p.m. to care for her son, who is unable to talk. For him, a good day is when he has only a couple of seizures - when his body stiffens, his heart races, and his breathing becomes heavy. Sometimes he'll have almost 100 seizures a day.

When Zachary was a month old, doctors found he had tuberous sclerosis, a genetic disorder that causes benign tumors to form on his organs. Growths have formed on his eyes. Some have appeared on his kidneys. Last year, a surgeon removed a tumor about the size of a quarter from his brain.

The way the support services are supposed to work is this: A disabled child, such as Zachary, would receive the type and amount of in-home care that a doctor says is "medically necessary." Smith is suing the state because she says it has failed to furnish the care it is obligated by Medicaid to provide.

Zachary receives his care through Medicaid because he has an illness that classifies him as disabled under federal guidelines.

"All I want is for them to provide me with the service that is supposed to be in my home," Smith said, noting that Zachary's doctors consider the care medically necessary. "I can't believe that they can't find one person."

Smith wrote Gov. Ridge. She wrote Keystone Mercy Health Plan, the Medicaid HMO contracted with the state to provide the service.

Earlier this month, aides began showing up on a consistent basis. She figures her recent lawsuit against the state Department of Public Welfare had something to do with it.

"DPW has promised to have someone in my home through September," she said. "But what happens then? And what about all the other people who are having the same problem? I know I'm not the only one."

State officials in Pennsylvania, however, say there is not a widespread problem of agencies' being unable to provide care to consumers. Keystone Mercy Health Plan refused to comment.

"We've had sporadic situations," said Suzanne Love, director of policy for the Medicaid program in the Public Welfare Department. "Everybody is dealing with the issue of making sure there's an adequate nursing supply. We do hear from the home health agencies about some of the competition they're facing."

CeCe Lentini, a spokeswoman for the New Jersey Department of Human Services, said New Jersey was aware that agencies were having problems with recruiting. Part of the problem, she said, was the salary. Home health-care aides typically make about $8 an hour.

"We're trying to do some constructive things to help," Lentini said. "The legislature included a $1-an-hour pay raise to personal-care assistants."

Smith said if efforts to recruit more workers were not effective, parents should have other choices. She has suggested the state allow her to receive reimbursement her for providing the care the state's contractors cannot give.

"I see this opportunity as a perfect resolution to the ongoing problems of staffing shortages I have had to deal with," Smith wrote in a letter last year to Keystone.

The idea has not been received well because it goes against Medicaid rules, which bar parents from being reimbursed. In Smith's case, Pennsylvania would allow a relative to receive reimbursement for caring for Zachary, but Smith doesn't have any family members nearby who can do it.

"I know this might not work for everyone, but I just think that we should have options," she said. "It has always been an option for us to put him on a waiting list for a residential home. But I think we should have a choice."

Ovetta Wiggins' e-mail address is