A publication of HMS School for Children with Cerebral Palsy, dedicated to reporting about student life, school programs and important events for students, parents, staff and friends. Published several times a year.

July brought dramatic developments and good news from the State legislature for HMS and Pennsylvania’s other Approved Private Schools (APSs). After strategic APS efforts to educate legislators about our students’ significant needs, several important issues were resolved to our advantage.

APSs will continue to receive funding as a separate line item in the Common-wealth’s budget rather than being subsumed under the general special education budget.

Our line item in the new budget has been increased to more realistically reflect our schools’ expenses, with a new system of funding in place that assures full, timely payments to the limits of each school’s appropriation. This legislation will allow us to operate more strategically and to better project needs for additional fund development.

Further, rather than waiting for a state appointed auditor to approve, for future reimbursement, monies we have already expended, the state will now accept the annual report of an independent CPA hired by HMS.

Future increases to the APS line item will be triggered by the increase to general special education of the prior year, but at a rate of 1.25 percent above that increase in recognition that APSs’ expenses increase at an even higher rate because of our students’ severe disabilities. Moreover, we are greatly reassured that the State will continue to share with local school districts the costs for approved students and will continue its oversight of APSs as in the past.

Pennsylvania’s General Assembly has also earmarked funds to reimburse some APSs for monies outlaid in past years that exceeded State payments, with similar funds set aside in the next years to satisfy those debts.

The APS community looks forward to working with the Department of Education under the new funding guidelines and to continuing efforts toward recognition of our essential role in serving the state’s most disabled students.

We are very grateful to the many supporters who wrote or met with legislators or provided testimony on behalf of APS students, and we count on your ongoing efforts as we move forward.

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At HMS, families function as an integral part of our team. But we seldom recognize the siblings who play a major role in our students’ lives.

Recently, we asked the brothers and sisters of four HMS students to reflect on their experience growing up with a sibling who has significant disabilities. Ranging in age from 11 to 20, they expressed many common reactions as well as individual attitudes and feelings.

For these young people, having a sibling with disabilities is the norm. John, 18, brother of 16-year-old Tom, says, "It’s been that way my whole life—I don’t know any other way."

Left photo: From left, John, Tom and Raymond.

Raymond, 20, says "Tom has taught me to be more accepting of other people who are different," a statement echoed by other students’ siblings. He says that the hardest part for him and John is that they’ve always been able to do a lot of activities together—like skateboarding and basketball—that Tom can’t participate in. "Tom will watch us but he can’t do it. It’s kind of unfair, I guess, but I’ve had 16 years to get used to it." Ray and John share Tom’s pleasure in watching Eagles games and also interact with Tom in other ways—with his trucks and toys.

At 19, Lorien, sister of 10-year-old Emily, says, "I used to get so mad when people would look at Emily or if other kids would ask their mother, ‘What’s wrong with her?’ I’ve been raised to not judge people." She says, "Emily has made me appreciate life. She’s like an inspiration to me...she has to struggle to do the tiniest things that I take for granted. It makes me think before I quit something."

Left Photo: From left Steve, Lorien, Emily and Kelsey.

Steve, 16, offers this view of their family. "We adapt better, we’re more flexible and strong than other families...We’re more patient with each other and with others and have been able to grow."

At times Steve felt a little held back from doing things with friends or from the fact that the family couldn’t just pack up for a vacation without a lot of advance planning. All these young people mentioned vacations as a tough challenge for their families—either they don’t go away or go very infrequently. Any trip requires a lot of detailed preparation and parents don’t really get much of a break.

Kelsey, a year older than Emily, says that she and her friends try to include Emily in their activities. She’s not always expected to include Emily. But, like any older sibling, she sometimes resents her parents’ requests. She helps feed Emily and helps with her computer; they watch movies together and play with toys. She says, "Everyone chips in when Emily needs help."

Photo at left: From left, Alex Amanda, Allison and Aaron

Amanda is one of 12-year-old triplets. She, Allison and Aaron also have a younger brother, Alex. Allison says that she and Aaron are closer because Amanda lives away at HMS during the week, but that she and "Manny" are still very close. When younger, she and Aaron depended on each other when their sister was acting out, but Allison says that she understood and accepted Amanda’s need for extra attention. These days they do a lot of arts and crafts and watch movies together. Allison feeds Amanda treats and paints her nails. But Amanda does get upset that she can’t participate in all of her siblings’ activities.

Aaron spends less time with Amanda—mostly they watch TV together. He’s interested in all of Amanda’s special equipment and also emphasizes the detailed arrangements they have to make for outings or an occasional family vacation.

For Grady, 20, brother of 16-year-old Melea, his loving relationship with her developed over time. As a youngster, he felt angry about the time and attention she required. He envied the sibling relationships he saw among his friends and was embarrassed by Melea in public. Later, when he visited her school, saw how teachers interacted with her and how she related to other children, he began to understand that Melea was capable of more than he thought.

Photo at left: Melea and Grady

Grady says, "I saw her for the kind of person she is—a happy and lovely girl. I started becoming more comfortable and going more places with her." He still missed having someone to fool around with, to tell on and to fight with, but found his own way to relate to Melea.

This past year, Grady volunteered twice a week at HMS to help with evening recreation activities and to spend time with Melea and her friends. "It was great. I loved going to HMS and seeing Melea...I can’t wait to do it next year."

Grady sums up a complicated relationship, "I love my sister more than anything in the world...She has made me the person I am today."

In an era of frequent job transitions and high turnover, HMS enjoys employee longevity across all departments. Forty-seven people have opted to work here for 10 or more years—24 of them for over 15 years. What keeps them at HMS?

No one says "it’s the money." But they do agree on other factors that draw them back—love for the children, their family of colleagues, the supportive work environment.

Speech therapist Sally Greenberg says, "Once staff are here, they stay because they get a lot of satisfaction and gratification in their work...they see things happen that otherwise wouldn’t happen. The kids make the gains and show it."

"The kids keep me here, seeing them grow and helping to foster that," says physical therapist Kate Paul. LSA Martina Upshaw echoes that feeling, "I enjoy working with the children—providing a safe, fun-loving place for then to come and learn." After 26 years, teacher assistant Valerie Jorgensen says, "It’s like a great big family here. We work as a team—we all do what the student needs…I can see how much they accomplish." "Everybody, directly or indirectly, works for the benefit of the kids," says Betty DelVacchio, administrative secretary.

Administrative assistant Pat Costa also loves watching students grow and knowing they benefit from her work. And she appreciates the warmth of caring colleagues. "We’ve shared a lot—had babies together, kids graduating, weathered tragedies, too."

Retiring after 30 years, LSA Daisy Gwin, or "Mama Daisy," loved coming to work every day. Caring for children has been her calling. She believes that staff longevity at HMS says something positive about the school’s character.

Photo: Long-Term Commitment... Staff who have worked at HMS for 10 or more years.

Those interviewed agree with Ms. Gwin. Nannette Velayos, teacher, believes that everyone here subscribes to the basic value in every human being and that this belief informs their efforts with students and with one another. She says, "Everyone tries to support each other...People are willing to listen, to at least take your opinion into account."

Staff appreciate the school’s commitment to excellence, to new ideas and to staying current with best practice. Nurse Kathleen Ross says, In nursing, "we’re using state of the art care—the school is willing to support it." Trish Hamilton, senior occupational therapist, notes "the flexibility in my position here, that there’s been room for the growth that I need and want." Ms. Velayos adds, "People don’t get stale here, they’re constantly reinventing themselves."

HMS also respects the staff’s abilities. "Nobody nags you," says Maintenance Supervisor Ron Banner. "They tell you what they need and that’s it."

Staff longevity provides a strong backbone of skill and continuity. Most people starting out at HMS don’t have much experience with the students’ level of disability. "We become the experts," says Ms. Hamilton. "We have that well to draw on." Charlie Harris, recreation therapist adds, "Our professionalism and the way we face challenges here...we all know each other and feed off of each other’s ideas. ‘How can I work better with that child?’"

In the end, love for the children is key. Many have watched more than one generation of students grow from preschoolers to young adults and count personal friends among them. "The kids are in my heart," says Mr. Banner.

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"Pomp and Circumstance" is synonymous with graduation. At HMS, the familiar processional is played by the bell choir, a performance group started in 1997 by music therapist Brad Biedermann.

Bells are manageable for many youngsters with disabilities. Those with capacity to move their hands can ring a bell, creating single tones. Other students activate a switch to ring preprogrammed bells that play the more musically difficult parts.

Mr. Biedermann collaborates with teachers to find the most comfortable switch site for each student, and staff assist students who need individual support. Practices challenge students to focus and be attentive—after playing one note, they must be ready for the next. They also practice playing rhythmically on the beat.

Eight or nine students, mostly from the oldest class at HMS, practice weekly when preparing for a performance at graduation, the holiday show or other special event. "The choir is more of an older student activity," says Mr. Biedermann. "It’s age appropriate for them to work as a group."

This past year’s performers included Howard, Krysti, J.T., Taylor, Malia, Amy, Patrick, Travis and Kristin, with Darius and Thomeqa substituting at graduation.

Mr. Biedermann says of the ensemble, "Performers get a sense of pride and positive feedback for their effort...With their performance, they’re collaborating and creating something bigger than any one person."

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CELEBRATING THE MOMENT... Avrohom (top left) poses proudly with HMS Assistant Director Christina Coia and his teacher, Deborah James. Yadiel (top right) focuses on Christina Coia as she presents him with an award, while board president Nancy Harris looks on.

Graduation 2004 was remarkable. Like all HMS graduations, it was remarkable for its personal focus on each of the five young men celebrating an important life transition and for reflecting on the many ways in which each graduate left his imprint on HMS.

From simultaneous translation of the ceremony into Spanish to accommodate the family of Yadiel to the many pinky fingernails painted black in loyalty to Howard, the morning was full of unique gestures. Fellow students and staff, administration, trustees, family and special friends joined to celebrate the accomplishments of Yadiel and Howard, Derek, Patrick and Avrohom.

Photos: PROUD GRADUATES... left to right, Derek, Howard and Patrick show their pleasure with the festivities.

Each graduate received his diploma and enjoyed personal remarks by members of the administration and staff, including heartfelt comments by Jim Carr of Conemaugh Township School District, who traveled from Johnstown, PA to present Howard’s diploma. Each graduate presented a videotape about his years at HMS and a prerecorded speech using a communication device. A song composed by the graduates was also performed.

There was much laughter, many tears and pride in all that these graduates achieved in their years at HMS. The ceremony marked a bittersweet goodbye to five very special students and friends, with hope that their futures will be bright.

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