Comprehensive Care for Adults Vital But Rare

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.