Comprehensive Care for Adults
Vital but Rare
by Angela Lindell
As Kim Frost approached her
18th birthday, she says she knew it was time to take charge of her
health care. “Ever
since I was little, my mom had been setting up my appointments and talking to
my doctors,” she says. “I wanted to start making my own decisions
and go to a clinic that focused on adults.”
Frost, who has cerebral
palsy, had been a patient at Gillette’s
childrens facility for as long as she could remember. When she decided
to leave her long-time pediatric doctors, she found the transition
to adult care to be a easy one.
Frost now visits an
adult clinic once a month. A physical medicine and rehabilitation
physician monitors her baclofen pump treatment to reduce her muscle
spasticity. Seating specialists adjust her wheelchair seat to ensure
comfort and minimize unsafe pressure. Says Frost, “I
like that so many things are available to me in one place.”
Lack of Providers for Adults
While
Frost’s story is encouraging, disability advocates say
that her smooth transition to adult-focused health care is far too
uncommon. “Clinics specializing in comprehensive care for adults
with cerebral palsy and other disabilities are nearly nonexistent,” says
Jo Ann Erbes, executive director of United Cerebral Palsy of Minnesota. “Many
people haven’t seen specialists since they were children, because
they didn’t know about or have access to doctors who understood
their needs.”
Why do so few health-care
providers focus on adults who have disabilities? Ronna Linroth,
manager of Gillette’s adult clinic, says health-care
coverage and costs are at the root of the problem. “Children
usually have health-insurance coverage through their parents,” explains
Linroth. “Medical Assistance, which typically covers adults
who have disabilities, reimburses only a percentage of the cost of
providing their care. It’s extremely difficult for organizations
to provide comprehensive care for adults, because costs are so high
and reimbursements are so low.”
Cost Barriers for Individuals
But it’s adults with disabilities themselves who incur the
highest costs. “Many adults who have disabilities fall through
the cracks of the health-care system,” says social worker Becky
Nelson, who manages a transition program for teens. “I see
people with complex medical needs who haven’t seen a provider
for 10 years or more.”
Many adults stay with
their pediatric providers long after their 18th birthdays. Linroth
notes that pediatric specialists often aren’t
prepared to handle age-related concerns such as arthritis and hypertension.
In addition, clinics designed to care for children and teens rarely
have the equipment and training necessary to lift, transfer, weigh
and otherwise accommodate adult patients.
The risks of not receiving
age-appropriate health care can be significant. Although disabilities
such as cerebral palsy and spina bifida aren’t
progressive, the effects of the aging process influence changes in
function. “Arthritis, obesity, degenerative diseases, overuse
injuries and pain affect adults who have disabilities earlier and
more severely than they do the general population,” says rehabilitation
physician Lee Schuh. “Those who lack adequate monitoring also
risk developing pressure sores and infections that can be extremely
dangerous, even life-threatening.”
A Clinic for Adults
To meet
the specialty health-care needs of adults who have disabilities,
Gillette opened an adult clinic in 2001. The clinic treats adults
who have a variety of childhood-onset disabilities, including cerebral
palsy, spina bifida and neuromuscular disorders. Along with a full
range of medical specialties, the clinic offers services such as
social work, psychology, assistive technology, and physical, occupational
and speech therapy. “We strive to be a one-stop shop approach,
with a diverse team of specialists working together to address
each person’s needs and priorities,” Linroth says.
“As providers, we think in terms of the whole lifespan, whether
we’re treating children or adults,” Schuh says. “For
example, how we educate children and teens about wheelchair use and
skin care can affect whether they experience overuse injuries and
infections during adulthood.”
According to Linroth,
Gillette sees patients who have transferred from pediatric practices
as well as people who haven’t seen
a disability specialist for years. Debbie Paine, who has cerebral
palsy, was in her early 50s when she heard about the clinic from
a friend. “I had thought that everything that could be done
for me had already been done,” she says. Not so. At Gillette,
Paine received a surgically implanted pump and new medication. She
also began a therapy program to help improve her mobility. “Now
I can go for longer walks with my husband,” she says.
A Brighter Outlook
Frost says
she looks forward to her future. “I’m doing
so much more than I ever imagined because of the care and resources
I’m receiving,” she declared. “Right now, I’m
attending college for fashion design, and I hope to design clothes
for people with disabilities some day.”
For information about Gillette Lifetime Specialty Healthcare, call
651-636-9443 or visit www.gillettechildrens.org.
