April 2001

For the Children

By Rich Smith

For the Children

Pittsburgh is home to an unusual and innovative alternative for parents with special needs kids—affordable pediatric extended care with Child’s Way.

Few rehabilitation cases ever prove more challenging—not to mention heart-wrenching—than those involving medically fragile infants and toddlers. But in the city of Pittsburgh, a unique, 2-year-old combination pediatric nursing-and-day-care facility stands as a model of how to make the rehabilitation of these very young children a happier, more successful experience for all concerned. The facility is called Child’s Way, the progeny of two Pittsburgh institutions serving the needs of kids—Children’s Home of Pittsburgh and the Children’s Institute of Pittsburgh.

“Among other things, we provide therapies, activities, and social interaction to help each child make progress toward developmental milestones and to be able to enjoy a fuller life,” says Pamela Schanwald, RN, MHSA, founder and interim executive director of Child’s Way. Importantly, the rehabilitation addresses each child in a holistic fashion, for these are children not just with rehab needs but also with ongoing, severe problems, such as congenital anomalies, congenital heart disease, feeding tubes, breathing tubes, and seizure disorders. “The demands of providing rehabilitation to these children is very different from providing it to an otherwise healthy child with a broken leg,” Schanwald notes. “Therefore, we do not put them through the motions of rehabilitation therapy when they are not medically stable enough to make progress that day.”

Tied into this holistic approach is the very design of the facility itself. “What we have attempted here at Child’s Way is to support these children’s needs in an atmosphere that is playful and warm so they can have fun while being treated or given therapy,” says Schanwald. “Every detail of our facility’s design—right down to the tiles—was chosen with appeal to very young children in mind.”

The maximum number of kids that can be accommodated at any one time by Child’s Way is 30, reports Medical Director Sara C. McIntire, MD. At present, the facility has an enrollment of 25 children, with an average daily census of 15, according to Schanwald.

Depending on their condition, children can be enrolled for a few months or more than a year. “Our goal is to mainstream these kids,” she explains. “A child can expect to be discharged from our program once mainstreaming is achieved. To date, 22 enrollees have been mainstreamed and discharged.”

Child’s Way accepts children up to age 3. Enrollees are referred to the facility primarily by pediatricians. Other referrals come from neonatologists, insurance company case managers, and any of the approximately 400 local social service agencies. “We also have parents contacting us directly,” Schanwald says.

To qualify for enrollment in Child’s Way, the candidate youngster only needs to be infirm enough to require some level of nursing care. “Our kids here have heart defects, congenital anomalies, short-gut syndrome, cancer, you name it,” says McIntire. “Some are automobile accident victims who have acute rehabilitation needs coupled with a need for medical and nursing care. Some have tracheostomies and thus require respiratory support.”

Schanwald adds that Child’s Way kids are usually those whose parents work or attend school and as such require day care services at a level far exceeding that available from any of the city’s other facilities catering to special needs babies and toddlers.

“Were it not for Child’s Way, which is licensed as both a medical and day care facility, these parents would have no recourse but to quit their jobs or drop their classes in order to remain at home with their children,” Schanwald says. “We provide an alternative—actually, the only alternative—to home care.”

For many of the parents on the lowest rungs of the socioeconomic ladder, home care is not even an option. Pennsylvania is one of the states that has been most aggressive in moving people off of its public welfare rolls and into the employment market.

COORDINATED CARE

Each infant and toddler who comes to Child’s Way does so only if they first have an outside physician willing to coordinate care with the facility’s staff, says McIntire, who also is an associate professor of pediatrics at the University of Pittsburgh School of Medicine and a participant in the diagnostic referral service of Children’s Hospital, Pittsburgh.

“For example, if a child has major lung problems and is referred to us by her pulmonologist,” she begins. “The pulmonologist will remain directly involved in managing that child’s respiratory disease, and will write orders to tell our Child’s Way staff what she wants us to provide in the way of therapies and other interventions within the scope of our services here. For our part, our nursing staff maintains very good and very frequent communication with that physician to keep her apprised of the patient’s status, and so enable her to make timely and appropriate adjustments of those orders.”

The staff at Child’s Way includes three primary nurses, several child care associates, one child life specialist, and a clinical coordinator.

Therapy for each child is overseen by the facility’s child life specialist, who is trained and certified as a developmentalist.

Schanwald describes the daily routine: “When the child life specialist arrives each morning, one of the very first things she does is obtain a briefing from each of the primary nurses concerning the status of our kids’ medical stability. She then performs an assessment of her own on each child and passes that information to the individual rehabilitation therapists as they phone in or arrive throughout the day.”

The rehabilitation therapists, which include physical therapists, occupational therapists, speech-language pathologists, audiologists, vision specialists, and developmentalists, are not part of the staff. Rehab services are supplied to Child’s Way through a county services agency.

“Both the therapy and rest areas are surrounded by support spaces, which we have depicted as little buildings gathered around a ‘town square,’” says Child’s Way designer Jill Swensen of the architectural firm Burt Hill Kosar Rittelmann Associates. “The therapy play room and the room where the children rest each have a unique arcade shape and color. In the room for resting, we have used more neutral tones. We have also used indirect lighting to create a more restful environment. The neutral colors, by the way, aid in the medical assessment of the children while they are sleeping. For example, jaundice or abnormal skin coloration can be more easily detected.

“Similarly, door frames are painted different colors, which help the children recognize each room’s place and function.”

To make the floor surface more fascinating for the children, Swensen specified tile and carpeting with heavy color variation. Because the children will spend a great deal of play time on the floor, a supplementary radiant floor heating system was installed in the play area floor to help keep them warm and comfortable.

Swensen says the thematic use of color and shapes is carried outside of the building to the main entry face. This entire surface, which borders the children’s play ground, depicts a pastoral setting, complete with houses, a barn, and a collection of friendly animals.

HURDLES APLENTY

Credit for the concept of Child’s Way belongs mainly to Schanwald, who was (and remains) the chief executive officer of Children’s Home of Pittsburgh. She began developing the idea in 1995.

Within 2 years, Schanwald and a growing circle of supporters began shopping for and soon found property that would serve as the planned venture’s future home—an aging, 6,000-sq-ft industrial warehouse in the heart of urban Pittsburgh. Nearly $1.2 million was raised to transform the warehouse into the showcase for special needs kids it is today. Renovation and remodeling began in late 1998.

However, before Child’s Way could begin accepting enrollees, it first had to obtain licensure. Here is where the real challenge began.

“We needed to be licensed as a health care facility, but Child’s Way was going to be a facility and a program that looked like nothing anybody had ever seen before,” Schanwald tells. “We didn’t fit into any category—not home health, not ambulatory care, not anything. As a result, the Pennsylvania Department of Health, which is responsible for licensing of facilities, was unable to give us its stamp of approval.”

They solved this dilemma through Senator Tim Murphy who introduced a bill authorizing a new category of health care facility—pediatric extended care. The state legislature approved the measure on the day before Thanksgiving, 1999. The governor signed it into law a few days later. Prior to opening, Child’s Way boosters had marshaled only enough philanthropic support to ensure continued operation of the facility through three-quarters of its first year.

“We determined that we had to win contracts with third-party payors and thus be able to collect reimbursement for the medical services provided,” says Schanwald. “To date, we have entered into agreements with most of the third-party payors we have targeted.”

As for rehabilitation, the county picks up the full tab for that. Accordingly, parents and guardians of the enrollees pay only for day care services.

“Our day care rates are $32 a day, which is competitive with those charged by other day care centers in the city,” says Schanwald. “Even so, a lot of our families cannot afford it.”

Child’s Way is currently in the early stages of putting in place a charitable care fund to cover part or all of the day care expense on behalf of enrolled families classified as “the working poor.”

“Last year alone we gave away $200,000 in charity care to working poor families that could not pay for services,” says Schanwald. “We are trying to develop a fund that will allow us to continue doing that without loss. But whether or not we are successful with that effort, we will always have the satisfaction of knowing we are providing excellent services here, doing good work for the kids, their families, and the community.”

Rich Smith is a contributing writer for Rehab Management.

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