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Copyright 2003 Multimedia Publishing of North Carolina
All Rights Reserved
The Asheville Citizen-Times
March 2, 2003 Sunday Final Edition
SECTION: BUSINESS; Pg. 1D
LENGTH: 1801 words
HEADLINE: A cap on CAP?; New rules threaten already tight supply of
long-term
caregivers
BYLINE: Leslie Boyd, STAFF WRITER
BODY:
A cap on CAP?
New rules threaten already tight supply of long-term caregivers
T
The words "technical amendment" seem innocuous enough, but for Patti
Ulirsch of Arden, those two words could make it even harder to find people to help
care for her son, Nicholas, 11.
Nicholas has cerebral palsy and several learning disabilities, including
attention deficit hyperactivity disorder. He's in a wheelchair, but he's what
Ulirsch describes as "really high-intensity."
"He has a way of going through workers," she said. "He takes so much
energy people tend to burn out."
As it is, Nicholas gets eight hours a day of help under the Community
Alternatives Program for Persons with Mental Retardation/Developmental
Disabilities.
But under this new technical amendment to the state's program, that time
could be cut to two hours a day of "habilitation," where he and his CAP
worker work toward goals, and six hours of respite care, which is custodial in
nature.
Although the same worker could perform both functions, the pay for
respite care is lower -- $8.50 an hour as opposed to $10.50 for habilitation -- and
the paperwork would increase because the two services have different
record-keeping requirements.
"What they did was put a whole broad range of services under
'habilitation' and said no one needs more than eight hours a day, and since kids are in school six hours a day, that means they only get two more hours after school,"
Ulirsch said. "If I have to find someone who's willing to work six hours a day at
lower pay, I don't know how much more difficult it will be to find people willing
to do the job."
Nicholas' CAP worker, Chris Spoerer, doesn't know what will happen when
the new rule takes effect, which could happen as soon as May 1. He gets no
benefits, and the hour he spends driving to and from the family's home is his own
time.
"Do I want to drive an hour to work two hours? I don't know," he said.
Currently, some 2,000 families are waiting for a place in the Community
Alternatives Program for Persons with Mental Retardation/Developmental
Disabilities, which pays for services that help people with disabilities live
outside of institutions. Yet staffing agencies have trouble finding
direct-support staff for the 5,200 families who already have CAP.
The state Division of Mental Health, Developmental Disabilities and
Substance Abuse Services acknowledges families may have trouble converting to the new rule.
Providers aren't likely to pay direct-care workers the same money for habilitation and personal care because what they receive from the state varies.
The state pays $22.23 per hour for habilitation and $13.92 per hour for personal
care.
Reasons behind change
The reason for the rule change is that no one should have to work 12 hours a
day, said Lisa Haire, acting branch head for operations and regional support
with the division.
"Habilitation is work," she said. "The definition is therapy, working toward
goals. Working toward goals 12 hours a day is a lot to ask of anyone."
Money was also a factor in the decision, she said. The state's average
per-person costs are rising 7 percent to 11 percent per year.
"We're aware some providers may walk away because of this, and we're trying
to address that," she said. "Representatives from the division, the Division of
Medical Assistance will sit down with providers to see how we can work this out
with them so consumers aren't adversely affected."
Spoerer and others wonder whether the state is trying to get more for less.
"If I spend two hours working on goals, does anybody really think I'll just
switch to respite care for four hours when I know he needs more?" he said.
"If I have to take a pay cut for those other four hours, will I cut back on my
work? Of course not ... I can go out and find another job but Nick can't go out
and find another Chris."
Even for families lucky enough to have long-term workers, the fear of having
to find another worker looms.
Staffing shortage
Kristy Komara of Hendersonville has found a CAP worker who is reliable and
has been with her 10-year-old daughter, Ashley, for three years.
But the worker may be moving soon, and Komara dreads trying to find another
one, especially under the new rule.
"I know the problems in the system," she said. "We went for months without a
case manager last year. Then we got one, but I never got to meet that one. We
got another, and I got to meet her before she quit a week later. I've had to
learn to play the system myself because I can't count on having someone there
who can do it for me."
Staffers also have to understand an increasingly complex system of paperwork
and red tape.
Every time Ashley, who has cerebral palsy, needs new adaptive equipment, her
mother steels herself for a six-month ordeal. Ashley, 10 uses a wheelchair and
needs a special seat for the bathtub, among other things.
Ashley has CAP, but getting her what she needs can still be a battle, her
mother said. Paperwork must be filled out in excruciatingly precise detail or
requests are rejected and the process has to start over.
"I can see if I was asking for a cow for the back yard so I could feed her
organic milk, but what I'm asking for is reasonable and appropriate," she said.
Officials acknowledge difficulties in staffing, especially in filling the
jobs at the lower skill -- and pay -- levels, such as personal care workers.
"This is not an easy job," said Lawrence Thompson, area director of Blue
Ridge Center. "You have some people with pretty serious behavioral problems, for
instance, and you're not paying people a lot more than they would make at a
fast-food restaurant."
If the state Legislature were to decide to fund CAP fully and eliminate the
waiting list, said Thompson, finding the people to do the work "would be a
bear."
Challenging issue
"This is a whole giant issue," said Holly Riddle, director of the N.C. Council on Developmental Disabilities in Raleigh. "And it's not just direct-support workers. It's probably the most challenging issue this field is facing."
Indeed, say advocates, finding psychologists, psychiatrists, medical doctors
and dentists is difficult, if not impossible. Part of the reason is the low
reimbursement rates from Medicaid -- in many cases, the government doesn't pay
enough to cover the cost of care.
And it's an issue nationally, said Gary Smith of the Human Services Research
Institute in Oregon, a nationally recognized expert in the field.
"If waiting lists were completely eliminated, there would be major problems
finding people to do the work," he said. "If North Carolina were to fully fund
CAP, it would be a year -- and that's a conservative estimate -- before everyone
could have services in place. Whenever you add that much capacity you have to
know you can't do it overnight."
The Governor's Advocacy Council for Persons with Disabilities, is one of a
group of advocacy agencies preparing a lawsuit to force the state to eliminate
the waiting list for CAP.
"The infrastructure is just not there to meet the needs," said Allison Bowen,
the agency's interim director. "But we need to move people out of institutions
and into the community. Initially, it will be more expensive than it is now, but
it will be less expensive in the long run. But cost aside, it's the right thing
to do."
Anne Doucette, program director for Blue Ridge Center for Developmental
Disabilities, said, "One problem is that workers in the community tend to make
less than those in institutions. They're also less likely to have benefits, and
that's a crucial piece."
As the system works now, direct-care workers in the community -- nearly all
of whom have just a high school diploma or GED -- earn about $7 to $11 an
hour.
They usually work part-time, although they may cobble together enough jobs to
work 40 hours a week, but many work without basic benefits like paid vacation
and sick days, not to mention health or disability insurance. They must provide
their own transportation.
In Brevard, Trend Community Mental Health Service has had difficulty finding
qualified case managers. Trend is Ashley Komara's provider agency.
"We're fully staffed now," said Carla Hill, program director. "But if someone
leaves, it's not easy to replace them."
Again, a major factor is the pay scale -- case managers at Trend start in the
low- to mid-$20,000 range. In addition, the work involves mountains of paperwork
to comply with state and federal requirements, so people who get into the job
hoping to work with families are disappointed.
"You have to understand CAP and Medicaid, and it's very complex," Hill said.
"If CAP were fully funded, we'd have to find at least two more caseworkers, and
if everyone in the state was looking for qualified case workers at the same
time, well, it would be very interesting."
Sherry Douglas of CNC Access, a staffing agency, said she gets plenty of
applicants for direct-support jobs, but not all are qualified to do the work and
a large percentage of them disappear when they learn how low the pay is.
"We all know the rates of pay are low and we all know reimbursement rates for
doctors and dentists are low, but does that excuse it?" she said. "Does that
mean people with disabilities have no right to care?"
Person-centered planning
Richard Visingardi, the director of the state Division of Mental Health,
Developmental Disabilities and Substance Abuse Services, started in the field in
1983 as a direct-care worker making $3.35 an hour in Michigan.
"Things haven't really evolved that well since then," he said. "It's going to take a whole culture shift to change things. We need to value people who work
one-on-one with people. They do hard work, and they deserve compensation. They
deserve respect, as do the people they work with."
Visingardi is an advocate of person-centered planning -- tailoring each person's services directly to his or her needs. He was nearly laughed out of a meeting in 1986 when he suggested it should be required, but in 1995 it became the law in Michigan.
"We need to give people what they need, no more, no less," he said. "We need
to be reasonable in what we ask of them. We used to tell people they couldn't
move on to a higher level of independence until they made their beds every day.
I don't make my bed every day. Why should they have to? And why do we waste
staff time and effort in such things?"
Visingardi believes the culture shift has begun, but it is a slow process.
"The system is a behemoth, but it can be moved -- it is being moved," he said. "I can't sit here and tell you everything is fine because it isn't, but
we're moving and it has to keep going. This is an issue of social justice."
Contact Boyd at 232-2922 or e-mail LBoyd@....
LOAD-DATE: March 5, 2003
2 of 2 DOCUMENTS
Copyright 2003 Multimedia Publishing of North Carolina
All Rights Reserved
The Asheville Citizen-Times
March 2, 2003 Sunday Final Edition
SECTION: BUSINESS; Pg. 2D
LENGTH: 333 words
HEADLINE: Stress, low pay and few benefits keep caregiver turnover rate high
BYLINE: Leslie Boyd, STAFF WRITER
BODY:
Stress, low pay and few benefits keep caregiver turnover rate high
According to a study commissioned by the state and done by the Human Services
Research Institute, the average turnover rate among community services case
managers was 41 percent in 1999, and 74 percent of agencies said they had
trouble hiring case managers.
The study also reports 27,700 direct-care workers in community settings in
North Carolina. Of those, 82 percent are women, half are single and about 43
percent are the primary wage earners in their families. The average annual
salary for these workers is $19,226, and many of them work without benefits.
As expected, turnover among these workers is extremely high. The report goes
on to say the workers who remain report increased levels of stress, and many
also report they believe the quality of services is compromised by the high
turnover rates.
"The incentives we can offer people are small," said Matt Revis of Turning
Point Services in Asheville, a staffing agency for CAP and other human services.
"But the fact is, one of the most significant factors in positive outcomes for
people with disabilities of all kinds is the stability of staff."
Turning Point starts respite workers at $8.50 per hour. Direct-care workers,
who need a little more training and expertise, average $10.50 per hour, and once
they average 20 hours per week, they can opt into the group health insurance
plan, which costs $3,800 per year.
"I'd love to offer free insurance coverage to everyone, but we have 600 to
700 part-time employees, and we'd be out of business," he said.
In addition, training for these workers has become more expensive. When the
majority of care was in congregate settings, less experienced workers could be
trained and mentored by more experienced staffers. As care moves into people's
homes, workers lose that mentoring and must be better trained to begin with,
said Revis.
Contact Boyd at 232-2922 or e-mail LBoyd@....
LOAD-DATE: March 5, 2003
********** Email Completed **********
Time of Delivery: March 05, 2003 04:04 PM EST
Email Number: 711:0:82792341
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Hollis Turnham
Michigan Policy Director
Paraprofessional Healthcare Institute
5013 Applewood Drive
Lansing, MI 48917
517.327.0331 (voice and fax)
hturnham@...
www.paraprofessional.org
www.directcareclearinghouse.org
www.directcarealliance.org
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