Advocates say the shortages are real and severe. For families of those affected, it means life changes. A Pa. official called problems "sporadic."
http://inq.philly.com/content/inquirer/2001/08/11/local_news/SCARE11.htm
Saturday, August 11, 2001
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
owiggins@phillynews.com
By Ovetta Wiggins
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