As HMS has come to serve children with increasingly complicated medical issues, medical considerations now play a more prominent role in our institutional efforts and in planning by nursing staff and other team members.

Medical issues promote a need for more information. Acquiring, managing and protecting the confidentiality of medical data has become an important responsibility. While recent HIPAA regulations about sharing of medical information by hospitals and other providers is not targeted to schools, HMS feels obligated to determine how HIPAA applies to our need for maintaining so much medical information.

Chronic medical issues and more frequent hospitalizations require greater communication and coordination with families to help their physicians understand the kinds of information and advice we need. Over the last years, HMS has also expanded our own team of medical consultants to include pediatric neurologists and a psychiatrist, and we will soon add a pulmonologist, to further support staff efforts.

Increasingly, we must examine what each child’s medical and health status will allow and how we can accommodate those parameters while maximizing the student’s educational experience. Trips, for example, have become more complicated events requiring close attention to individual sets of circumstances—who is going out, where and what time of day, whether a nurse is needed or whether there are special food or other requirements.

Medical concerns are often related to higher costs for medical equipment and for services such as a one-on-one aide or nurse. To meet expenses in ways that satisfy needs at school while not compromising at-home supports, HMS explores alternative funding sources and works hand-in hand with families and insurance companies.

All of these issues, continually factored into administrative and staff strategies and expectations, call for patience, flexibility and creativity and the need to remain focused on our educational mission while providing our students with quality care.

TREATING STUDENTS ON THE SPOT. . . HMS nurses grab students on the run when activities are in high gear. During the annual art show, Anita Rickards (left) stopped Derrick in the hall to administer a tube feeding, while Colleen McGowan-Hardin (right) did the same with Joey to keep the boys on schedule without interfering in their fun.

Nursing services constitute a vital part of each student’s program at HMS. A staff of 10, including three full-time day nurses, provide 24-hour care, seven days a week. As HMS students have become more medically involved, nurses are constantly on the go.

In a mural recently created with students and staff by art instructor Eiko Fan, staff nurse Colleen McGowan-Hardin portrayed herself on roller skates and with six arms. She says, "That’s how I picture myself. . .the phone is ringing, someone is paging me, I’m doing a feeding."

Among their responsibilities, nurses do all tube feedings, prepare and administer medications, provide respiratory treatments, flush tubes and carry out many other procedures. They receive reports from and give information to LSAs and other nursing shifts on students’ status and condition and trouble shoot if a child becomes sick, communicating regularly with parents about medical issues that arise at home and at school. Nurses participate in IEP and other team meetings. And they consult frequently with education staff about individual students.

Despite myriad demands, the focus of nursing services is to enable a quality educational experience for each child. Medical director Dr. Steven Bachrach says, "The nursing department provides a holistic overview of the care—the interaction of medical needs with educational and social needs so that children can participate fully in school life."

To that end, Ms. Von-Nessen-Scanlin, supervisor of nursing services, has reorganized delivery of nursing services since she came to HMS a year ago, dividing students into three teams, with each day nurse—including herself--assigned to a team. She says, "With one nurse consistently giving care to the same children, we are able to focus closely on each child, do a better job of objective information gathering and assessment and provide for continuity of care."

During the day, nurses spend considerable time in classrooms, generally going to the child in an effort to minimize disruption of school routines and activities. They help teachers adapt classroom programs around a child’s needs, perhaps suggesting different positioning for greater comfort or discussing how a student’s medical condition may impact her classroom behavior.

Ms. VonNessen-Scanlin wants to include the child’s nurse at all team meetings for better communication flow and to be a voice for medical issues in program planning. One of her goals is to maintain an appropriate balance between nursing expertise and educational expectations. Staff nurse Anita Rickards, who has worked at HMS for 14 years, notes the increase in students’ medical issues and the need to collaborate with many other school staff. She says, "We’re one big team who work together."

Outside of HMS, people may view children’s disabilities as a form of illness. "Instead, philosophically we look at our students’ disabilities as baseline wellness," says Ms. VonNessen-Scanlin. "They have chronic conditions that may interfere with daily functions. This is the baseline we have to work with to maximize their functioning and quality of life."

Regular dialogue with families is critical to care at school and in this regard staff function as case managers who keep the student and family as the focal point. Ms. VonNessen-Scanlin says, "We have to remember that HMS is a school, not the medical provider. Our role is to carry out the plan of care. We call the parent first." If the team observe changes that are of concern, Dr. Bachrach may examine that child and alert the family, offering recommendations for follow-up with the student’s physician.

Although Ms. VonNessen-Scanlin sees much yet to accomplish, she and her staff have good reason to be proud of their work, their advocacy for students and the growing role of nursing services.

This past school year, students and staff at HMS have helped pediatric residents from Children’s Hospital of Philadelphia (CHOP) to better understand the needs of children with cerebral palsy. This exchange is part of the hospital’s Community Pediatrics and Advocacy Program (CPAP) that trains residents to become effective advocates for children, adolescents and their families by working in partnership with community-based agencies.

By exploring a variety of community services that help to improve and maintain the health and well being of their patients, residents become more sensitive to the context of their patients’ lives and, as a result, more knowledgeable and compassionate clinicians.

Each month, following a morning in CHOP’s cerebral palsy clinic, a small group of second-year residents spent the afternoon at HMS. They toured classrooms, therapy areas and other programs, meeting HMS students, observing the staff’s teaching techniques and adaptive approaches and learning about HMS’ many efforts to integrate students into the community. Social worker Ellen Scharff discussed parents’ experiences in raising a child with cerebral palsy and their challenges in obtaining needed equipment, services and supports.

Susan VonNessen-Scanlin, supervisor of nursing services, says, "This program helps residents to see patients with severe disabilities as more than sick children who may need an antibiotic or special procedure—but to see them in their regular environment and to recognize that they have ‘well’ lives that include participation in a school program and other activities with friends." She adds, "It’s also about getting an understanding of the child’s baseline medical condition and how physicians can promote the basic wellness of each child. And it drives home their role as advocates for children with specialized needs."

Cara Vivarelli-O’Neill, CPAP program coordinator, also emphasizes the value of visiting children in their natural environment at HMS since residents typically see a child only when he is ill. She says, "We want to nurture pediatricians who are as comfortable advocating in the community for their patients as they are in their medical practice."

Over the year, approximately 30 residents visited HMS and other specialized community resources. Ms. VonNessen-Scanlin reports enthusiastic feedback for residents’ increased understanding of cerebral palsy and their new appreciation of what the children can achieve.

When Susan VonNessen-Scanlin came to HMS last June as supervisor of nursing services, she left a long hospital-based career caring for children with chronic diseases. Despite a radical change in environment, her work at HMS reflects an ongoing theme—how to deliver services to children with chronic conditions so they can live a productive life.

"That’s my love," she says. "I’ve always seen my role as a nurse to help families obtain the tools and services they need to live a quality life with their child."

Ms. VonNessen-Scanlin brings extensive training and college teaching experience to her HMS role. She holds a B.S. in Nursing from Villanova University and an M.S. in Nursing from Gwynedd-Mercy College. She also trained at the University of Pennsylvania for post-masters certification as a Pediatric Nurse Practitioner focused on acute and chronic disease. Most recently, she earned an M.B.A. from Pennsylvania State University with a concentration in Healthcare Administration that enabled her to explore her interests in clinical outcomes and the economic factors that impact service delivery to children.

With equally impressive clinical experience, Ms. VonNessen-Scanlin focused early on cystic fibrosis and pediatric pulmonary care. She established a cystic fibrosis program at Alfred I. duPont Institute in Wilmington and later worked at Hahnemann University Hospital and the Hospital of the University of Pennsylvania (HUP) as a nurse practitioner and coordinator of their pediatric and adult cystic fibrosis programs. Ultimately she moved to CHOP’s neonatal intensive care unit and fetal surgery program as an advanced practice nurse.

A long-time resident of University City, Ms. VonNessen-Scanlin served as president of Friends of Clark Park and met HMS director Diane Gallagher through their shared interest in the park’s revitalization. Ready to step back from the stresses associated with high-tech fetal procedures, her new position at HMS has provided the opportunity to be part of children’s everyday lives and to apply her rich background.

As a clinician who values her partnership with patients’ families, Ms. VonNessen-Scanlin enjoys working with HMS parents to optimize their children’s learning and participation in school activities. She supervises 10 nurses who provide round-the-clock care and says, "I can’t say enough good things about the nursing staff and the entire staff at HMS. Everyone’s here about the kids. It’s a great team that’s dedicated to carrying out the plan for each child."

Mother of a young daughter and son, Ms. VonNessen-Scanlin and her husband recently moved to Flourtown. As life settles down from the move to a new job and home, she hopes to reclaim her pleasure in running and skiing while pursuing her goals to further strengthen nursing services at HMS.

HMS recently hosted two continuing-education events for HMS staff and other professionals.

Parents Anonymous of Harrisburg sponsored a Train-the-Trainer workshop for mandated reporters from Southeastern Pennsylvania on identifying signs and symptoms of child abuse and neglect. Patricia Derbish, Assistant Director of the District Attorney’s Office in Lehigh County, presented the two-day program attended by school personnel and other child-care workers.

HMS physical and occupational therapists, together with other therapists from area rehabilitation facilities, participated in a symposium on custom-molded wheelchair seating sponsored by Young’s Medical Equipment and Signature 2000. Several HMS students helped presenters in demonstrating the finer points of executing the molding process.

Once again, the annual Beef ’n Beer parent-sponsored fundraiser provided a food and fun evening for staff, families and friends of HMS. Organized by Maryann Crossfield, mother of HMS student Samantha, the event also generated a contribution of $1,832 to the school. Many thanks to Maryann for her efforts and for a great HMS tradition!

Time flies…

Sadly, this was our last year at HMS. Sarah came to this remarkable place as a young child full of needs–non-verbal, no self-mobility.

She had started school in the Harrisburg area in a great kindergarten class that recognized her limitations and her potential. Moving here in 1987, Sarah soon lost what she had learned after being placed in an inappropriate IU classroom. We appealed. Sarah won. We found HMS. It seems like yesterday.

Now, at 21 as one of the graduating seniors in a class of achievers, Sarah is a young woman embarking on a new path. She has found a voice with the help of her Dynavox, teachers and therapists. She has gained self-mobility with the help of her powerchair and her therapists. She has grown in self-esteem, thanks to the knowledge, enthusiasm, energy, dedication and patience shown by everyone at HMS.

The result? Sarah has been empowered to succeed–learning more than we imagined could be possible. We didn't have concrete expectations, because there was no model for us to follow. HMS provided those expectations and changed our lives.

Sarah has many friends among the students and staff at HMS who mean the world to her. Just as importantly for us, our family has been included in the HMS family. HMS has indirectly, we believe, guided Sarah's brother and twin sister into choosing careers working with children.

HMS has given us so much. Support, respite care, advice, suggestions. And always, the truth. We are forever grateful.

TWO VIOLINS, A VIOLA, A CELLO AND A BASS MAKE FIVE. . .When a Philadelphia Orchestra string quintet performed at HMS in April under the direction of bass player Henry Scott, Michael, who thoroughly enjoyed the music, tried plucking the bass strings with a little hand support from LSA Sharon Williams.

CREATIVITY REIGNS. . .(top) Krysti (right) shared a laugh with speech therapist Laura Pitkin as they toured HMS’ annual art show to select their favorite works. (below) With help from his teacher, Kerry James, Avrohom modeled an electrically-lit, straw-art headdress created by students for the show.

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