With a little help

For the Cooney family, and others, the UW Waisman Center is a lifeline
The Waisman Center provides services for families in need

By Paula Zelonky, Isthmus
Reprinted by Permission

Rob Cooney has a lot of things going for him. At 13, he has a quick mind and does well in school. He has the freckle- faced good looks popularized by Norman Rockwell paintings. He lives with two loving parents and an energetic younger sister named Kate. He shares his life with a sweet old spaniel, three turtles, and a best friend, Otis.

Like everyone, Rob faces challenges, although his are more serious than most. He has spastic quadriplegia, a form of cerebral palsy caused by injury to the brain; it affects his body movements and muscle coordination.

Rob, like a third of all people with cerebral palsy, has normal intelligence. It’s a spectrum disease, for which symptoms vary from mild to severe in different people. For most of his life, Rob has needed a wheelchair because he is unable to use his arms and legs. He is visually impaired and his speech is limited to “Yes” and “No.”

Born seven and a half weeks premature and weighing only three and a half pounds, Rob had a brain ultrasound shortly after birth that revealed a bleed around his brain. His physicians ultimately concluded that Rob would need brain surgery. His parents, Janice, a physician assistant at the UW Hospitals General Surgery Department, and Bob, a science writer on campus, took him to a specialist in Chicago for another opinion. The specialist assured them that Rob would probably be okay even though he’d had a significant brain injury.

“Most care providers are optimistic,” says Janice, “probably because they want you to love your child first and deal with other things in time.”

But Rob wasn’t okay. He has been totally dependent on other people for every need throughout his life. Even eating is difficult for him because it’s hard to swallow. Frequently, he’s fed through a gastronomy tube that goes directly to his stomach.

“I have my days when I say, ‘I can’t do this,'” relates Janice, “but you just do it because you love your child.”

Premier institution

Fortunately for Janice, she doesn’t have to do it alone. As she and her husband strive to help Rob reach his full potential, they have an important ally — the UW-Madison Waisman Center. Overlooking the bucolic playing fields of the west campus, the Waisman Center is one of only 12 facilities in the nation dedicated to providing services and support to people with disabilities. It’s also a premier institution for understanding, treating and preventing developmental disabilities.

The Waisman Center began more than 40 years ago as the Joseph P. Kennedy Jr. Laboratories, named for the brother of the late president, John F. Kennedy. (A Kennedy sister, Rosemary, has spent her life at St. Coletta’s in Jefferson following a botched lobotomy ordered by her father, Joseph Kennedy Sr.) Ten years later, the center was renamed for Harry Waisman, a UW physician and researcher. Waisman had been a pioneer in establishing mandatory phenylketonuria (PKU) testing for newborns, which has helped prevent the onset of a genetic form of mental retardation in tens of thousands of people.

Approximately 300 UW physicians, researchers and therapists staff the Waisman Center in cooperation with University Hospital and Clinics. Most of their efforts involve the needs of children with developmental disabilities. These children are served in seven clinics specializing in genetics, cerebral palsy, developmental disabilities, and communicative disorders.

The Waisman Center does not recruit or appoint faculty members. Rather, those who are doing research or otherwise working in related areas seek appointment through their academic department.

One program, Birth to 3, provides early intervention and outreach, with staff who visit homes and day care centers. “We help families build therapy for their disabled child into their daily lives,” says program director Linda Tuchman, “and give them strategies for addressing their child’s needs for daily tasks.” The Birth to 3 program focuses on each family’s individual priorities, such as taking a child with cerebral palsy to the grocery store.

Another outreach program, Community Ties, serves developmentally disabled children and adults with behavioral problems like aggression or the inability to interact. “We go to where people live, work or attend school,” says director Paul White. “We draw up a behavior plan, train people to implement it, and provide strategies to deal with issues before they become issues.”

The Cooney family’s first contact with the Waisman Center was in the Biochemical Genetics Clinic. It provided genetics counseling, when it looked as though Rob might have a degenerative and fatal muscle disease. This possibility was eventually ruled out.

“Diagnoses always change over time because there’s a lot of new information coming in,” says Janice Cooney. “We had a lot of appointments and a lot of conflicting information. Strangely enough, I was really happy when I found out Rob had cerebral palsy, because that meant he didn’t have a fatal muscle disease.”

Rob’s relationship with the Waisman Center really took hold in the Birth to 3 program. He began regular visits to the Cerebral Palsy Clinic at age two. He also participated in the Waisman-sponsored Dew Drops program, a play group that includes children with disabilities.

“I tried play groups with normal kids, but that was too heartbreaking,” recalls Janice. “At Dew Drops, I met another mother who’s son had a similar disability. She and I are steadfast friends to this day.”

Janice goes on to explain that, “Parents need to find somebody who really knows what it’s like to have a child with disabilities. I don’t know how I’d made it through the years if I didn’t meet her.”

Being inclusive

Making it through the years with a child like Rob involves near-constant contact with health-care providers. At one point in his life, Rob had 18 doctors and therapists working with him. He now gets routine care from his pediatrician, physical disabilities doctor and pediatric pulmonary doctor. He has also seen a pediatric neurologist, neurosurgeon, orthopedic surgeon and gastroenterologist. Then there are the occupational therapists and physical therapists who help Rob with everything from eating and drinking to wheelchair use. Speech and language therapists assist with communication alternatives and he sees a nutritionist because kids with cerebral palsy have trouble swallowing and can’t always get enough calories.

Rob also needs a lot of interaction from others because he has a bright, active mind but, with his visual impairment, he can’t read or watch TV. Because Rob’s disabilities are so extensive, he qualifies for ten and a half hours per day of home support through the Community Living Alliance.

“In-home support is essential to having all Rob’s daily needs met,” says Janice. “He has aides that help him eat, dress him, bathe him and help with range-of-motion [exercises]. The support we receive helps us support Rob in our home, so there is no need for institutional care.”

Janice has also taken advantage of the respite program offered by the Family Support and Resource Center. Last summer, Rob spent a week at Camp Wawbeek, an overnight camp for children with disabilities. The experience was so successful he may go for two weeks this summer.

Like many children in Dane County, Rob’s education started with nursery school. At age two, he entered the “Cloud Room” at the Waisman Early Childhood Program. Although Janice admits Rob cried every day for a year when she left, “The teachers were great about it.” The program, it turned out, was exactly what he needed.

“Finding appropriate child care for children with disabilities can be a challenge,” says Janice. “I wanted Rob to go to a loving, nurturing environment. I wanted him to have the life experiences other children have and make friends.”

The Early Childhood Program is “inclusive,” meaning one-third of the enrollment is comprised of children with disabilities. At any one time, the program will have children with visual impairments, cerebral palsy, autism or Down Syndrome, as well as typically developing children. Teachers with a background in special early childhood education are paired with teachers trained in regular early childhood education. Speech and occupational therapists hold sessions with the kids right in the classroom, so that they may practice their skills where they’re needed most.

“Preschool years are the most traumatic for parents of disabled children,” says Joan Ershler, director of the Waisman Center Early Childhood Program. “So if they know families of typically developing kids, it helps them see their own child as just a kid rather than a disabled kid.”

Ershler adds that parents of children with special needs may not realize that all children have sleep issues and tantrums, and that not every problem their child may have is a result of his or her disability.

The ultimate value in having an inclusive preschool classroom, says Ershler, is that “the family, the staff, and eventually the kids come to realize that everyone has something to offer.” This philosophy is amply demonstrated by the Waisman Center’s own practice of hiring people with disabilities.

Eventually, Rob attended morning kindergarten at public school and the Waisman Center’s Early Childhood Program in the afternoons. “This was great for Robbie and great for me,” says Janice. “Robbie had really good friends at the Waisman Center, plus he could make his OT [occupational therapy] and PT [physical therapy] appointment part of his school day.”

Bringing out the best

Today, Rob attends middle school in Verona. An aide arrives at his “barrier-free” home in a newer subdivision on weekday mornings to get him on the bus. Then Paul Riehle, Rob’s school aide, meets him in the school parking lot and stays with him until he puts him on the bus at the end of the day. Another aide meets Rob’s bus when he arrives home and stays with him until his parents get home from work.

Rob is in regular classrooms for every subject except math. Riehle, a jovial, easygoing young man, wheels Rob to each class, helps him when the curriculum calls for visual input, and assists him with eating and other physical needs.

“Rob has a great sense of humor,” says Riehle. “He can get jokes other kids can’t.” Riehle notes that, like most 13-year-olds, Rob has a certain fondness for “bathroom” humor. “The interesting thing about Rob,” Riehle reflects, “is how he brings out the best in people. Even kids who are real behavior problems are very kind around him.”

Language arts class begins with “Rob’s news.” Rob communicates via a small, computerized device called a “Dynamite.” On a snowy January morning, the class turns in Rob’s direction as he activates his device.

“I’m glad it’s Friday,” he comments, followed by his classmate’s murmurs of agreement. Next, he says, “Do you have any plans for the weekend?” which evokes responses like “skiing” and “soccer game.” Finally, Rob asks the class what kind of music they like, adding that he likes Paul Simon and The Beatles.

“It’s a way for Rob to interact with his classmates,” says Riehle, “and it generates friendships outside of class.”

Although the Dynamite has a touch screen for selecting what the user wants to express, Rob’s limited use of his hands rules out using anything but a switch he can operate with his head. Rob learned how to use the device at the Waisman Center’s Communications Aids and Systems Clinics (CASC). Occupational therapist Andrea Johnson has worked with Rob at CASC since 1991; currently, she sees him once a month.

“Because of Rob’s visual impairment, we needed an auditory scanning device like the Dynamite,” says Johnson. “The Dynamite lists categories such as, ‘Things to Do for School,’ ‘Fun Stuff, ‘Things to Do at Home,’ and ‘Personal Stuff.’ When the Dynamite names the category that Rob has in mind, he hits the switch with his head.”

Once Rob identifies the proper category, he must select the subcategory to express his need. For example, if he selects the “Fun Stuff” category, the Dynamite will go on to list a variety of activities, like “Listen to Music” or “Play on the Floor.” Once again, Rob will choose the activity via the head switch.

When Rob demonstrates his facility with the device by selecting, “Can we walk down to Michael’s for frozen custard today?,” Janice explains that, “Just because Rob asks for something on his Dynamite doesn’t mean he gets it. I used to feel compelled to give him everything he asked for to provide reinforcement, but you shouldn’t give any child everything they want.”

Rob’s Dynamite is also programmed to do things like turn on his CD player and adjust the volume, or remind him that it’s time to take medications. Says Janice, “One of my goals is to help Robbie learn that he can be away from us and communicate with people who are not so familiar with him.”

Dealing with it

The Cooneys paid for their custom-designed, barrier-free home out of their own pocket, but the extent of Rob’s disabilities also makes him eligible for medical assistance from the state. In addition, Group Health, the Cooneys’ HMO, pays for many aspects of his care. Still, it’s not easy to find therapists willing to accept the low rate of reimbursement offered by the state, and then tackle the mountain of paperwork necessary to get it.

Janice acknowledges that Rob’s care and the care of other disabled children represent a considerable expense to taxpayers. But, she notes, “we have all this medical technology to save premature infants. As a society, we need to help those with less positive outcomes live life to their fullest capabilities.”

Dan Bier, the Waisman Center’s associate director, says funding for its services comes from a mix of public sector programs, including county health programs, schools and public health organizations, combined with insurance companies.

“I do know that families who have a child with a disability very often have a difficult time getting the services they need,” says Bier. Often, insurance companies don’t cover the costs, either because they don’t have the Waisman Center on their “preferred provider” list, or else don’t deem the services as “medically necessary.”

But primary health-care providers aren’t always equipped to deal with “low incidence” conditions like biochemical and genetic disorders. They need access to specialists who have advanced training and experience treating patients with these relatively rare conditions. To this end, Bier sees a need for more cooperation among health-care providers.

“Families need and want these services,” he says. “Care providers know what they are doing and they want to help families. We’ve just got to figure out a way to make this work.”

For Rob Cooney, the health-care system is working as it should. Though he will never be completely independent, his proximity to the Waisman Center and its services have helped him make great strides in coping with his disability.

“I’m not looking for sympathy,” says his mother. “As a health-care provider, I work with people who have cancer, which helps me keep things in perspective. We all have our issues in life. One thing I’ve learned is that people deal with issues that you might think are insurmountable. People are amazing!”