A real education for kids with special healthcare needs

"What sculpture is to a block of marble, education is to a human soul." These are the words of Joseph Addison, 17th-century English essayist, poet, and dramatist - and they still apply today. The best teachers are those that can discover the hidden potential of their students by reaching below the surface and uncovering talents and abilities that may otherwise never be seen. But for some children, even having the opportunity to attend school can seem out of reach.

Complex medical needs can seriously interfere with a child's ability to receive an education. At the Radius Pediatric Center Day School, however, a highly motivated and specially trained staff makes it possible for children with a multitude of physical and developmental challenges to learn and thrive in a unique educational environment. Despite conditions such as cerebral palsy, seizure disorders, and the need for alternative feeding and breathing equipment, students at Radius are able to become active participants in their educational experience.

Meeting multiple challenges facing both children and parents

The Radius Pediatric Center Day School is located in Plymouth and is part of the Radius Pediatric Center, which provides short- and long-term care for individuals age 3 to 22 who have severe developmental and physical limitations. The day school is certified by the Massachusetts Department of Education and is a member of MAAPS (The Massachusetts Association of 766 Approved Private Schools). Currently, there are 12 students in the program, and an additional 12 slots have been approved by the Department of Education. All of the present students reside at the Radius Pediatric Center, but the additional openings in the classroom are being made available to children in local communities.

Often, children with disabilities never receive a formal education, due in part to a lack of available services. Others may attend school, but endure a long commute to reach a program that can accommodate them. And sometimes, families simply don't know what resources are available for children with multiple needs. Staff at the Radius Pediatric Center Day School are well aware of the difficulties these children and their families face and are fully prepared to help alleviate any fears that a parent or guardian may have about surmounting them.

Referrals to the program are often made by physicians. In addition, students may be referred by school districts through the Individualized Education Process (IEP), a statewide special-education initiative. After a referral is made, a school-district representative, parents, and members of the Radius staff meet to create an individualized educational plan for the child. Staff from the Radius School who attend this initial meeting include the director of education, a teacher, the school nurse, a social worker, and staff members from physical therapy, occupational therapy, and speech therapy. The process provides a unique opportunity for educators and medical staff to work in tandem to facilitate a safe and successful learning experience.

Radius team members share a passion and commitment to the day-school students, according to Matthew J. Muratore, Radius's executive director, who points out that their motto is, "It can be done." Pediatric administrator Marie Coughlin recently described the absolute joy of having a student focus on her with recognition for the first time: "This is a boy who is nonverbal and has severe spasticity, and it takes so much concentration for him just to focus. When he smiled at me and knew who I was, it made my whole day."

Linda White has been the director of education for the past 22 years. "Each day," she says, "brings new challenges, and I am constantly amazed by the children, their families, and the staff."

Meeting the educational challenge by achieving one goal at a time

The Radius Day School program is characterized by an on-site multidisciplinary team that allows for prompt interventions, according to Beth Barton, OTR/L, MEd, NDT. Barton has been a pediatric occupational therapist for nearly 20 years. At Radius, she says, "I work with people who want to accomplish things - and I help them achieve that." Currently, she is working on augmentative communication devices such as adaptive switches that enable individuals with limited mobility to operate appliances. She is also involved in an effort to take five students to Disney World in 2008. "We are raising $22,000 to make this trip possible."

Another member of the team, Judy Freeman, PT, says needs and equipment are constantly changing. Certified in assertive technology, which allows her to work on projects such as wheelchair modification, she says she enjoys teaching other caregivers about positioning, splinting, and using specialized equipment. Freeman is also involved in coordinating care between rehab, education, and nursing.

One crucial skill for workers in the program, Freeman says, is the ability to identify subtle changes in residents. "If they are crying," she says, "we need to identify what is upsetting them, determine what they need, and provide it." Sometimes the answer can be as simple as a change of position.

Freeman also explains that rewards come in very small increments at Radius, and that staff need to set realistic goals for themselves. "Meeting those goals," she says, "improves the quality of life for residents and enhances their ability to learn."

Finding rewards in letting kids be kids

Megan Currier and David Berg are physical therapy assistants (PTAs) at Radius. Currier became involved in the pediatric program after working in hospitals, nursing homes, and outpatient programs. Her workload involves wheelchair clinics, swimming, horseback riding, and working with the orthotist who customizes braces and splints.

"I love it when you know you have helped to make them more comfortable," Currier says. "Seeing achievements like sitting independently is extremely gratifying." But, she adds, "This type of work is not for everybody. It takes time to get to know the needs of each child. You also need to learn about new equipment all the time."

Berg is a certified PTA instructor who was trained at the Mass Hospital School in Canton. He emphasizes the importance of remembering that students "are kids, and we need to make things enjoyable for them. The more you do this work," he says, "the more attuned you become to subtle changes. That's where I feel I can really make a difference for them."

Berg especially enjoys training other staff members. He helps them learn about specialized equipment such as standers or standing tables, which allow for weight bearing, the use of which is extremely beneficial both physically and psychologically.

Jennifer Eagerman, SLP, was impressed during her interview at Radius by the sense of teamwork she witnessed. Now a member of the school's staff, she finds effective communication systems and tools for students. "I'm able to use my skills," she says, "plus learn new ones. I also enjoy being involved in dysphasia assessments and treatment."

A big part of the education program is Eagle Eyes (EE), a computerized, user-assistive technology developed at Boston College that enables paralyzed and non-verbal students to communicate. "I work with teachers," says Eagerman, "and we provide theme-based lessons with the EE program. I also train teachers, instructors, and aides how to use and implement the program." The reward, she says, comes from seeing positive reactions from the residents when an effective communication system like EE is put in place.

Flexibility is the key to achieving desired outcomes

Each classroom is staffed by a special-education teacher and at least two teacher's aides who are also trained as certified nursing assistants. Bonnie Mansfield is a teacher with a BA in education and is currently pursuing her master's degree in special needs. "Our special students need the best people possible, and I am honored to be able to work with them," she says.

The biggest challenge, according to Mansfield, lies in the fact that her students are nonverbal. "Their limitations can make it difficult to measure how much they comprehend," she says. "You need to be able to pick up on small accomplishments. You need to have a lot of energy and enthusiasm as well as patience. You must be prepared to do anything from changing diapers to dressing up in costumes. Flexibility is key."

Teacher Tim Welsh is also working toward a master's degree in intensive special needs. Welsh says every child has specific needs that have to be identified. Then personalized goals and objectives need to be set. The satisfaction, according to Welsh, lies in helping students achieve those goals.

Measuring progress, he points out, can be a challenge. Sometimes it is found in subtle gestures like facial expression, tracking, and smiling. "You need to be extremely patient, compassionate, and flexible," says Welsh. "You cannot be resistant to change."

For each staff member, the rewards are personal

Marisa Baronas, LCSW, is director of pediatric social services. She previously worked in crisis intervention with adults and children and in protective services for disabled adults. At Radius, she has been directly involved with the day school's accreditation process through MAAPS and was instrumental in developing a homelike family room for visitation. "You give a lot," she says when describing the job, "but you get a lot more back."

School nurse Vickie Fetterman, RN, has been at Radius for 11 years. She started in geriatrics but moved to the pediatric section after only six months. Fetterman says the students "get into your heart. Each child," she says, "is special in his or her own way. As much as we give them, they give us so much more." What she enjoys about working in the Pediatric Center Day School is how much more time with each child it allows her than she would have as a staff nurse. "I really get to see them shine," she says.

Music therapy, provided by Lisa Rue, MEd, certified music therapist, is another part of the educational program at Radius. Rue says her goal is "to reach the 'music child' inside who is not handicapped." Toward that end, students are encouraged to participate, rather than just be entertained. "They feel the instruments," Rue says, "even play them if possible. They are often able to identify a favorite instrument or song simply by smiling or moving."

To keep a mind going

Frances Leighton is the grandmother and guardian of 14-year-old Austin, who has been a resident at Radius for the past six years. According to Leighton, Austin was left with deficits after a difficult birth during which he stopped breathing. He is wheelchair-bound and nonverbal, but he can demonstrate recognition through smiling. Just hearing his grandmother's voice is enough to elicit a smile.

Leighton provides special attention by reading books to Austin and says, "I hope he will understand what I am reading to him, and I believe he does comprehend much more than he can express." She also tells him about her day and talks about his father and his sister, Indigo.

"The teachers at Radius," Leighton says, "are always cheerful and treat Austin in a very caring way." She says the Radius Day School has kept him alert and credits the program with "keeping his mind going." That is quite a compliment to the program, but then, that is exactly what the teachers and healthcare staff at Radius think their job is, too.

This is the second of a two-part series exploring day care and educational services for children with special medical needs in Eastern Massachusetts (Read part 1). Kimberley Jordan is a nurse and a freelance writer.