Lynn Plewes
of Warminster is trying to squeeze her fair share from a system of
mental health care that is admittedly short on manpower and
funding.
She says the
mental health of her daughters hangs in the balance. Emily, 10,
has childhood-onset schizophrenia. Sarah, 7, was diagnosed at age
2 with autism and mental retardation.
Both girls
are eligible for supplemental services through the county’s
mental health system. But for the past three years, they’ve
either been on waiting lists or on the rebound, passed from one
therapist to another due to the high rate of turnover, their mom
said.
"It’s
stressful for them to constantly create new relationships [with
therapists] or to constantly lose them," Plewes said.
In the last
3½ years, Emily has received a total of six months’ worth of
prescribed therapeutic staff support services, her mother said.
TSS is a vital part of her treatment, according to the county
mental health department.
TSS staffers
ideally should have a master’s degree and experience working
with high-risk children, according to mental health experts. But
it is difficult to hire and retain such staff because the county
hires only part-time TSS workers and pays no benefits, said Karen
Graff, executive director of Penndel Mental Heath Center in
Langhorne. Last year’s turnover rate for TSS workers at Penndel
was between 95 percent and 100 percent, Graff said.
Eighteen
months ago, Plewes was at the library checking out books on
schizophrenia when Debbie Moritz, who also lives in Warminster,
spotted her. The women found that connecting with each other
doubled their resources and resolve, both emotionally and
strategically.
Moritz has
three children in special education classes. She said she is as
frustrated as Plewes with the educational and mental health
systems. Both have fallen short in helping her cope with her
children’s needs for nearly 20 years, Moritz said.
Her oldest
is 19 and has been ill most of his life, Moritz said. His
diagnoses have included bipolar disorder, attention deficit
disorder, oppositional defiant disorder, obsessive compulsive
disorder and, most recently, paranoid schizophrenia. Her
15-year-old son has severe attention deficit disorder and
depression. And now his psychiatrist thinks he may be bipolar,
too. Her 8-year-old daughter has mild learning disabilities.
About a year
ago, Moritz and Plewes formed a support and advocacy group for
families of children with mental and developmental issues. They
call it NAMI-CAN — National Alliance for the Mentally Ill —
Children and Adolescents Network.
"At
first, it started out as a way of letting people know they
aren’t alone in this. But now we’re branching out into
advocacy, on issues like special education and mental health
care," explained Moritz.
"There
are a lot of reasons why parents don’t address the shortcomings
in the system. In the beginning, you don’t know any better. You
honestly don’t know what to expect. A part of you is still in
denial; meanwhile, you’re looking for answers," Moritz
said.
Eventually,
the women said, many parents become aggressive in lobbying for
help as they see their child falling behind educationally,
socially and developmentally.
"For
the most part, schools tell you what they want you to know. They
hand you a piece of paper with your rights, tell you your child is
doing fine, and you believe it," Moritz said.
Through NAMI-CAN,
Moritz and Plewes are lobbying for services such as respite care
and baby-sitting, which would give overburdened parents a breather
from the demands of 24-7 care. They also want more state funding
for special education and supplemental staffing for pediatric
mental health services.
"My
children’s problems are long-term and lifelong," Plewes
said. "So even if we get one thing settled, there’s always
going to be another new thing on the horizon to deal with.
"My
girls have made fantastic strides, but their needs aren’t going
to go away," Plewes said. "We are in this for the rest
of our lives."
Sunday, June
10, 2001
of Bucks County
Pennsylvania
