Cover Story: The Kids' Place

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October 2003

By Rich Smith

The most anxiety-riddled—and, often, tearful—question any parent of a severely injured or disabled youngster ever asks upon first meeting with rehab professionals is this: “What kind of future can my child hope to have?” At Children’s Specialized Hospital (CSH), Mountainside, NJ, the answer given is more often than not one that resonates with confident optimism, owing to a long and illustrious track record of helping restore function and quality of life to kids in dire straits.

“Being the country’s largest pediatric rehabilitation system, we see more cases than anyone else. You see more, you get very experienced; you get very experienced, you do a better job. It’s as simple as that,” says Martin Diamond, MD, medical director of outpatient services and a 23-year veteran of working directly with CSH patients.

CSH is a special place, no doubt about that. Its CARF-accredited inpatient services include centers of excellence for dealing with traumatic brain injury, spinal cord dysfunction, and severe respiratory problems (such as those associated with premature birth or congenital disease). In addition, the 60-bed facility operates cutting-edge programs that include a burn center and—for children requiring intensive rehabilitation (but who are medically stable enough to return home each evening)—a day hospital. An affiliate member of the Robert Wood Johnson Health System, CSH has also been successful at creatively applying educational and rehabilitation technologies.

“In everything we do, our focus is solely on the rehabilitative needs of children, from newborns all the way on up to young adults, age 21—and that allows us to accomplish things that wouldn’t be possible at a more generalized pediatric hospital,” says Michael Dribbon, PhD, associate vice president of rehabilitation services. “Those other types of facilities might have a therapy department, but almost always it’s only a small piece of what they do. Because of that, their rehab resources can get spread pretty thin. That’s not a situation we find ourselves in here.”

EXTENSIVE INTERACTION, INTERVENTION

Of the many different cases presenting at CSH, virtually all can be classified as profoundly challenging, but the most commonly seen are traumatic injuries from highway accidents and significant orthopedic disabilities from diseases such as cerebral palsy. In every instance, the primary goal is to optimize mental and physical functionality to enable the young patients to live lives that are as fulfilling as possible, says Dribbon. This is achieved, he says, through a multidisciplinary team approach that draws on the skills of physical therapists, occupational therapists, speech-language pathologists, augmentative communications experts, rehabilitation technology specialists, exercise therapists, dietitians, neuropsychologists, nurses, and more, all under the direction of either a physiatrist or a physician with significant experience appropriate to the case.

According to Frank V. Castello, MD, medical director and interim CEO, severe-injury inpatients come to CSH mainly by way of discharge from trauma centers and acute care hospitals, while orthopedic cases are referred from community hospitals and private-practice pediatricians. However, before accepting a new patient, CSH sends out a preadmission coordinator to assess the child and establish that he or she can be safely moved to CSH and, more important, is an appropriate candidate for services there.

“If it’s decided to admit the child, then the preadmission coordinator chooses which one of our multidisciplinary teams the patient will be assigned to and which doctor will become that child’s attending physician,” says Castello. “The coordinator also provides to the team detailed information about things we need to take into account as we work with the child. For example, if the motor vehicle crash he or she was involved in resulted in a relative or friend being killed, then there may be bereavement issues that we’ll need to address in order for the rehabilitation process to end with the most optimal outcome.”

Upon admission to CSH, the full team assigned to the case convenes to conduct a thorough evaluation touching on the aspects specific to each of the disciplines represented. Input from the child’s family is solicited to help guide the team later in developing treatment goals.

Once a treatment plan is in place, services required will be arranged by a designated in-house patient coordinator.

“The patient coordinator’s job includes monitoring patient progress and making sure that there are no gaps in service, equipment needs are met, and they are the readily accessible point person for interaction with the child’s family,” says Castello.

Every 2 weeks, the full team and the family reconvene for a discussion of the case (if the patient is old enough and sufficiently developmentally advanced, he too will be a contributing participant at this meeting). “We review goals, adjust those in place if deemed advisable, and—as circumstances warrant—create new ones,” explains Castello.

Key members of the team meet more frequently. According to Castello, they come together once a week to review progress and make minor adjustments to the treatment plan as necessary.

As many as four such teams operate around the hospital on any given day. Each handles 10 to 16 cases, Castello says.

REACHING OUT

Length of stay for traumatic brain injury cases averages 4 to 6 weeks at CSH, but longer admissions are not unusual for that diagnosis.

“It all depends on the progress patients make during rehabilitation,” says Castello. “Generally, we keep them only until they’ve achieved their goals or we feel they’ve reached a plateau and are not likely to make any further progress.”

Discharge options are multiple. For traumatic brain injury patients with remaining cognitive deficiencies significant enough to prevent them from returning to a mainstream school environment, CSH offers, as one example, an outpatient neuro-rehabilitation program.

“Most patients complete the program and do well in school,” says Dribbon. “The kids participate in a classroom setting, which helps get them reaccustomed to school. During the time they are in the program, which can be several months, they’re also getting their educational needs met.”

Outpatient services in general at CSH are described by Castello as both comprehensive and integrated. “Our idea is to offer patients and their caregivers one-stop shopping,” he says, contending that patients end up shortchanged by systems that deliver only fragmented care. “You don’t want a situation where the child has to go to a provider in one county and then someone else in another county and a third provider in another still—none of whom are able to talk to each other and so are forced to provide care in somewhat of a vacuum.” That, says Castello, is a prescription for allowing patients to fall between the cracks.

To further minimize any possibility of patients losing out on needed services, CSH has opted to establish outpatient centers over a wide geographic area. At present, it maintains outposts in 10 locations, with more to come.

“Our goal is to get those services out to the communities, out to the families, right where they live,” says Dribbon. “We want to make it as easy as possible for them to access the services they need.”

The impact has been considerable. In the last 3 years, says Castello, “we’ve nearly tripled the number of children served annually in the outpatient setting; up from 4,000 in 2000 to about 11,000 today.”

Outpatient services are marketed chiefly in two ways. The first involves sending staff to make grand rounds of the state’s community hospitals and to conduct outreach clinics at pediatric developmental schools and the like. Related to this is CSH’s residency program where future doctors gain experience with chronic illnesses and pediatric rehab medicine. Diamond explains that the exposure to CSH gives those residents a point of reference later when they are in private practice and they encounter a child with needs best met by treatment at the facility.

“The hope is that they’ll remember us and make the referral,” he says.

The second marketing method is to encourage word-of-mouth promotion by parents, who often belong to informal and formal networks of other parents with children facing similar problems.

A challenge involved in running so many outpatient centers is staffing—CSH has had to scramble to line up sufficient high-quality specialists for each locale.

“We have to make sure that the staff at those outpatient centers are of the same caliber as the staff at our Mountainside base,” says Diamond. “If there’s one thing that can be said of our staff, it’s that they are about the most intensively committed to their work that you’ll find.”

Reimbursement is another big issue—so big, in fact, that it explains why there are not more facilities like CSH in markets all across the country.

“We lose money through our operations,” says Castello, who notes that Medicaid is the primary form of insurance for upward of 60% of CSH patients.

Even so, adds Dribbon, “no one is ever turned away on the basis of inability to pay.”

Castello indicates that CSH stays financially sound by making up its operational income shortfalls with charity funds raised through CSH’s nonprofit foundation.

ON THE MOVE

Foundation donors have been generous enough lately to permit CSH to plan for a move to a new, state-of-the-art inpatient center slated for construction next year in New Brunswick, NJ. Specifically, the facility will be situated on the campus of Bristol-Myers Squibb Children’s Hospital, an acute care facility. Also being built there is the Robert Wood Johnson Medical School’s Child Health Institute of New Jersey, a research institute expected to concentrate on unlocking the secrets of molecular developmental biology.

The impending relocation of CSH is prompted by several factors, one of them being a desire to keep its facilities well ahead of the scientific and technologic curve, says Castello. Another motivation is to enable CSH to more easily provide acute care services to inpatients on occasions when the need arises—CSH offers no such services itself, but Bristol- Meyers Squibb Child-ren’s Hospital does.

“As it is right now, if we need to do a CT scan on a patient, we have to transport the child by ambulance to a hospital many miles away,” says Castello. “That’s expensive and an inconvenience all around. And since we don’t have the imaging volume to justify buying our own CT scanner, we’re pretty much stuck. But if we’re physically adjacent to an acute care hospital where CT and other services are readily available, then we no longer have a problem.”

After CSH moves into its planned new home, the buildings left behind in Mountainside will be given over fully to outpatient services and to a long-term assisted-care residence for children whose ongoing needs are too complex to be met at home, Castello divulges.

Having served thousands of youngsters over the years, CSH today can proudly point to an abundance of success stories. Some are intensely meaningful to the practitioners involved. Diamond, for one example, speaks fondly of a formerly wheelchair-bound cerebral palsy patient whose wedding he not long ago attended.

“She made a beautiful bride,” he says. “It was very rewarding to see her walk down the aisle. It was even more rewarding when she turned to us afterward and she said she would always remember us here at CSH as the people who motivated her the most to keep moving forward, to keep accomplishing her goals.”

On that day, the only tears shed by her parents were those of joy—as so often happens once the fulfillment of rehabilitation arrives for patients treated at CSH.

Rich Smith is a contributing writer for Rehab Management.

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October 2003