Contents: (click on the links below)

Director's Message  

Transition: Revisiting Plans Two Years Post-HMS 

Summer Vacation Gives Way
To Advanced Training for LSA Staff 

Laughter, Tears and All Best Wishes: Graduation 2005 

Supporting HMS Is Easy! Count The Ways 

The Parents Corner 

At HMS we continually work to streamline and maximize our efforts. To that end, we recently made an administrative change that brings together Nursing and Life Skills Assistants (LSAs) as one working unit. By centralizing and formalizing communication and procedures we will insure greater continuity of care.

Our student population has become more medically fragile, with more complex needs. Nurses and LSAs each care for our students’ physical and emotional health. As an extension of nursing, LSAs carry major responsibility and require a free flow of information – one that provides direct and immediate updates about each child’s condition – to do their jobs well. Since a nurse is always on duty and current about a child’s health, it makes sense for nursing to direct and update individual LSAs about a child’s care.

If a youngster requires a brace or splint, for example, the training and schedule for its use would typically come from occupational or physical therapy. Previously, that information might have gone directly to the child’s LSA. But if the LSA were absent, there was risk that the information would not be passed on. Under new protocols, the therapist conveys all information to the student’s nurse, who then shares the information with other nurses and the child’s LSA. The nurse and LSA observe and document any issues that may arise with the equipment and talk together with the therapist about making changes to solve a problem.

Nursing functions as the centralized information repository, determining the required level of care or changes to be implemented and communicating back with the therapist, the LSA and the family.

Sue Scanlin and Dee Coleman have worked hand in hand to fine tune the new system. While the nursing supervisor heads the unit and takes the lead in medical and physical care, Ms. Coleman manages crucial operations–how we incorporate a child’s special medical needs into day-to-day activities and accommodate those needs while carrying out a school and residential program.

HMS LSAs, meanwhile, completed training over the summer–as reported in this newsletter–to become registered nursing assistants. We want to provide them with every professional support in their vital role of student care.

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Transition: Revisiting Plans Two Years Post-HMS

Andrew (right), who left HMS at age 19 and now lives at the Margaret E. Moul Home, enjoys a moment with his father, Neil.

Neil Marshall expected his son to remain at HMS until age 21. But two years earlier, with summer approaching, an unanticipated crisis forced a different choice. A five-day HMS resident requiring total care, at 19 Andrew had previously attended summer camp or a day program, paid for through waiver funds.

That spring, the county MR system announced that they would no longer pay for the summer program. With four younger children, a new baby on the way and good home-care help difficult to find, the Marshalls could not bring Andrew home for the summer. They moved him from HMS to an ICF/MR (Intermediate Care) facility with an available space, knowing that this was not an ideal placement for his long-term needs.

Mr. Marshall had researched and visited facilities when Andrew turned 18 and had already put him on a wait list for the Margaret E. Moul Home in York, PA. Moving him to the ICF/MR was risky–would he be able to get Andrew out when a space became available at Margaret Moul? Six months later, a space opened, but Mr. Marshall was given only two weeks to get approvals. A tense, stressful period ensued. Andrew was turned down by his county MH/MR unit; Mr. Marshall appealed. Time was short, with endless red tape, but the appeals judge ruled in Andrew’s favor and helped to facilitate the move.

Happily, Andrew loves life at Margaret Moul and reconnecting with HMS friends who are fellow residents. After the trauma of pulling Andrew from HMS early and later fighting for his placement at Margaret Moul, Mr. Marshall says, "Never give up on what you want for your child...You have to rely on yourself as your child’s advocate and to persist even if an arbitrary system says ‘no.’"

Mr. Marshall believes he should have started planning even sooner. "You can never start too early," he says. "You never know what can happen. Even if you think you want your child at home, things can change–divorce or illness. We got into a crisis where we had no option."

Maritza, a 2003 graduate, lives at home with her mother. Barbara deAmigo, who left her job to care for Maritza, says, "I would never let her live somewhere else. She’s safe here." Maritza negotiates the first floor in her power wheelchair and reaches her second-floor bedroom on a lift. She listens to music, watches television and visits with neighborhood children who stop in.

Mrs. deAmigo has been her daughter’s sole caregiver, struggling with Philadelphia County for waiver-program services. She applied early on for home-care assistance, but was told repeatedly that Maritza was not eligible or that her paperwork was missing. Four different caseworkers gave contradictory information about Maritza’s program eligibility. Last year, funding was finally granted for a rolling shower, and belatedly, Maritza now receives some home-care services.

Mrs. deAmigo misses HMS, where Maritza received all the services and therapies she needed, saying, "I was working and so contented with the school for her that I didn’t worry about the future." She would like Maritza to attend a day program where she could have a simple job, but dislikes the program she was offered and worries about their staff. She now anticipates a struggle for funds for kitchen renovations to better accommodate Maritza. She plans to return to work this year and to find someone she knows to provide homecare.

When Sarah graduated from HMS in 2003, Gayle and Don Rich knew that she would live at home. They had visited facilities like Margaret Moul, but felt that Sarah was not ready–nor were they–that she needed to become more independent and to more assertively communicate her needs using her Dynavox.

Sarah attends a CADES day program, riding SEPTA’s CCT Connect bus. At CADES, she has an Individual Program Plan, but the staff/participant ratio is much higher than at HMS and Mrs. Rich describes the program as meeting mostly her social needs. The only participant using a communication device, Sarah communicates with her boyfriend and others in the program and socializes on her long bus rides.

Although eligible, Sarah has repeatedly been denied state-funded services. The state points to the language of a trust fund awarded in a medical malpractice suit brought following Sarah’s birth. The Riches have rewritten the trust to satisfy state demands, but continue to be denied services. In future, they may sue the state so as to preserve the remaining trust that can provide Sarah needed equipment and services throughout her life.

In hindsight, the Riches would make the same transition decisions. "Looking forward," Mrs. Rich says, "Sarah is looking more like an adult and sees herself as more of an adult...I see a time when she and we will want her to be somewhere else, but it will be something more sheltered than a group home."

These three stories speak to many families’ experiences as their children reach adulthood. Unforeseen circumstances, the arbitrariness of a system that withholds resources and the different level of programming available post-HMS are all familiar themes. Ellen Scharff, HMS social worker, emphasizes that early planning and getting on wait lists–even if parents want their child at home–provides the best likelihood of choices and being prepared for the unexpected, like a parent’s illness, a young person’s push for independence or other circumstance. Life post-HMS may have a different reality, but HMS is preparing children for it from the moment they enter the school and fully supports families’ efforts to plan for their children’s move into young adulthood.

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Summer Vacation Gives Way to Advanced Training for LSA Staff

NURSING SKILLS...LSA Cherise Murphy observes during a classroom demonstration session while her colleague Terri Solomon (center) instructs Cortina Millsip in how to control a nosebleed. The women practiced various skills as part of a month-long training program in August for HMS LSAs to become registered nursing assistants.

LSAs TAKING A TRAINING BREAK... From left (back row) Cortina Millsip, Kenya Table, Judy Artis, Terri Solomon, Tiffany Wilson; (middle row) Tylena Monroe, Lauren Dukes, Melanie McNeal, Linda Table, Kevin Lowery; (front) Ciera Hinkson. Not pictured, Ieletta McCauley.

HMS Life Skills Assistants spent an unusually demanding summer. They sacrificed vacation time for an additional four weeks in school, training to become nursing assistants.

Since many students are more medically involved than in the past, HMS wants to give its experienced LSA staff even more medical background and to raise the bar for entry-level LSAs. The school contracted with a state approved program to provide the training, and LSAs attended class from 8:30 to 3:00, five days a week, in a program combining classroom study with clinical experience. After successfully completing the program, they will sit for a state exam to become registered nursing assistants.

For experienced LSAs, this training formalizes knowledge acquired on the job and offers fresh perspectives. For new LSAs, now required to be registered nursing assistants, their education insures basic skills that HMS can build on with in-house training related to cerebral palsy and the specialized needs of HMS students such as feeding, seizures, equipment and communication. An experienced LSA will also mentor each new hire.

Dee Coleman, who supervised LSAs until the department recently merged with Nursing, says that the formal training program builds self esteem for HMS’ skilled LSAs. They know that they already have a lot of specialized training and the opportunity to be registered by the state will provide public validation of their knowledge and skills.

Ms. Coleman, who worked in collaboration with Sue Scanlin, supervisor of the combined nursing and LSA unit, says, "We’re extremely excited about where we’re taking this department, and we already see the benefits of this collaboration." She says that LSAs’ higher level of skill will free up nurses to focus on more pressing issues. As registered nursing assistants, they will be able to take vital signs, like blood pressure, and carry out other tasks that previously only nurses handled.

Ms. Scanlin, also delighted about the closer working relationship between nurses and LSAs, adds, "This training says a lot about how HMS sees the LSAs. It’s an investment in developing people. We greatly value them and what they bring to the school."

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Laughter, Tears and All Best Wishes: Graduation 2005

GRADUATION MOMENTS...(top left) Kristen Millar expressed her delight as she entered during the "Pomp and Circumstance" processional, assisted by Chris Stern, classroom teacher. 
(top right) Amy Levine used her communication device to deliver her prerecorded graduation speech, while her teacher, Nannette Velayos held the microphone and offered encouragement.

(top right)Jeffrey Serrao flashed his characteristic smile during the ceremony, accompanied by his friend and assistant teacher, Val Jorgensen. 
(top left) Travis Wagner was understandably proud as he received the State Representative James Roebuck award for outstanding leadership, presented to him by Christina Coia, HMS assistant director.

HMS graduation is personal–poignant, joyful and celebratory of the individual achievements of each young adult leaving the school. Graduation 2005 marked this special moment for four long-time HMS students: Amy, Kristen, Jeffrey and Travis.

Christina Coia, assistant director, captured the moment’s bittersweet quality–watching these students transform from children to young adults and having to say goodbye. She emphasized that it "takes a village" to make this moment possible, a team of 12 to15 people, or more, who dedicate themselves to each student’s development. Introducing each graduate’s team, she reminded those gathered that at HMS, you can count on everyone to pitch in with whatever needs to be done.

From Diane Gallagher’s presentation of diplomas to comments by teachers and other staff particularly close to the graduates, the personality and impact of each young adult was highlighted with humor and affection. Individual videos portrayed the students’ growth and experiences at HMS, and each graduate offered farewell remarks that alluded to favorite memories and special friends.

A luncheon for invited guests extended the celebration. In the evening the graduates returned to dance and mingle with fellow students, alumni, staff and family. Next June, perhaps Amy, Kristen, Jeff and Travis will return to honor old friends marking their special moment in the spotlight.

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Supporting HMS Is Easy! Count the Ways

United Way and HMS: Partners in Giving. Please consider making a gift to HMS School through your organization’s United Way Campaign. List the school as your designated charity (00240 for the United Way of Southeastern Pennsylvania) on the donor choice form. HMS is not included in the Donor Choice Book, but you will find us on the website at www.uwsepa.org.

Savor brunch at Abbraccio Restaurant and earn donations for HMS. On the 4th Sunday of each month–September 2005 through March 2006 (except December)– Abbraccio will donate 5% of gross food proceeds from its Breakfast Buffet to HMS School and feature a "guest waffle chef" from HMS. Available from 11am-2:30pm, the $10.95 buffet offers mouthwatering options. Abbraccio is located at 820 S. 47th Street, off Baltimore Avenue (www.eat@abbracciorestaurant.com).

Give your purchases extra punch with bonus points for HMS. A variety of corporate programs contribute to HMS when you shop on line with School Pop (www.schoolpop.com), register and shop at Genuardi’s Markets (ID#500001141) or register and use your Target Card or Target Visa Card (ID#23174). Your purchases can help HMS buy equipment and other wish-list items.

Your generosity will support the high level of programming that our students deserve, and we thank you. For further information about any of these activities, please call or email Suzanne Zimmermann, Head of Development at 215.222.2566 or suzannez@hmsschool.org.

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The Parents Corner

by Ilene Brent

My daughter, Melea, turned 18 on September 9th and started her final years at HMS. Transition looms. What will happen to my lovely daughter in three years?

Melea’s transition has been on my mind since she turned 16 and was included in her IEP meeting. The staff were already thinking about her future. At that IEP meeting, we discussed what skills Melea would need when she left HMS. It would be extremely important for her to communicate her needs and wants to others, so goals were set to encourage her to do so. Since then, Melea has reached some of those goals, but more work needs to be done. The next three years are very important. It’s Melea’s chance to grow and become the person who can let people know what she wants. And, I know the HMS staff is there to help her.

Deciding where our children go after HMS is different for each of us. My decision became easier this past year when I was at HMS to tag along on a field trip to visit Margaret E. Moul Home in York, PA. It was about 7:30am, and I was sitting with Melea in the hallway by the nurse’s station. As the staff came through to start their day, they greeted Melea, and she was in heaven. She loved the attention and saying hello to everyone. I knew then it was important to find a place as much like HMS as possible. After visiting Margaret Moul with Melea and her classmates, I knew Melea needed to be in a similar environment. Whether Margaret Moul or another facility, my daughter needs lots of people around her. She is a warm, gregarious, young lady who thrives on social interactions.

During these next three years, I know the staff at HMS will lead me when they can, but it is my responsibly to make sure my daughter is happy, safe and secure after HMS, and I look forward to the challenge. I hope you do, too.

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