When Jean Sanders walked into the physical therapy gym at Horizon Elementary School, her eyes immediately fixed on a new wheelchair in one corner of the room. “Is that the chair?” she asked excitedly. Her 12-year-old son, Joe, had outgrown his previous wheelchair and she had been working for months to obtain a new one. As Joe was wheeled into the room and transferred into the new chair, she could see the difference- how much more supported and comfortable he was. She smiled, rubbed her son’s arm and looked at staff member Michelle Roth. “Thank you,” she said. “Thank you.”

Michelle is the coordinator of Horizon Elementary Schools’ durable medical equipment

ADVOCATE FOR SUCCESSMedical Equipment Clinics Support Students

clinics, which she helped launch more than 20 years ago and are now also offered at Horizon High School. “Our families were really struggling to get their children the medical equipment they needed,” recalled Michelle. More than 90% of Horizon School students require some form of medical equipment. Obtaining medical equipment – including wheelchairs, strollers, walkers, standers, bathroom equipment, helmets, orthoses (braces for feet) and splints (for arms or legs) – is a highly complex and often daunting process. Families must have the child evaluated to determine if the equipment is needed, figure out which specific piece of equipment will work best, then meet all of the specific requirements set forth

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More than 50 guests, including Livingston Mayor Michael Silverman and Deputy Mayor Al Anthony, turned out to celebrate the opening of two new rooms at Horizon High School on November 24th. The Alfiero and Lucia Palestroni Foundation, LLC awarded a $100,000 grant to CPNJ to fund construction of a vocational training center and a sensory room/physical therapy gym. Lucia Palestroni made this gift on behalf of the foundation that bears her name and that of her late husband, Alfiero, and in memory of their dear friend, Herbert Caspert, whose grandson, Matthew, attends Horizon High School.

Guests enjoyed a brief program that included an address by Mitchell Caspert, whose father was honored by the Palestroni grant, and then cut the ribbons to officially open the two new rooms. Staff members provided in-depth tours and explained the equipment and how the rooms benefit Horizon students (see pages 4-5 for details and photos).

“We are thankful to the Palestroni Foundation and to the Caspert family for making this possible,” said CPNJ CEO Purna Rodman Conare. “They have truly helped to transform our high school to better serve our students.”

HORIZON HIGH UNVEILS NEW ROOMS

Independent A REGULAR NEWSLETTER OF CEREBRAL PALSY OF NORTH JERSEY WINTER 2016

Joe at the durable medical equipment clinic with (from left to right) Peter Arlauckas of National Seating and Mobility, his mother Jean, physical therapist Steve Pasterick and clinic coordinator Michelle Roth.

CPNJ’S BOARD OFTRUSTEES

Edward H. Becker

Darren BurnsSecretary

Shari Caspert

David J. Carlson Vice Chair

Ronald J. Greenberg

Chris Halkyard

Bette Hanauer

Brad Jacobson

Helene JaffeChair

Bruce Kleinman

Brian T. KlozaTreasurer

Christine Kotarba

Brian Kronick

Ruth Legow

Clark Machemer

Kelly MarxVice Chair

Maxine Myers

Barry Ostrowsky

Jennifer Pollak

Beth S. RoseVice Chair

Justin P. Walder

H. O’Neil Williams

Amy Ziebarth

TRUSTEES EMERITI

Edward I. Burns

Burton L Eichler+

Thomas L. Litwin+

Jerome N. Waldor+

+Deceased

MESSAGE FROM THE PRESIDENT & CEO

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Our front page story this issue is about

our agency’s best kept secret- our

durable medical equipment clinics.

Over the course of two decades, we

have developed a highly successful

program model that addresses a

major gap in services for special

needs families. When families learn

that their child needs a new piece of

medical equipment, they quite literally

do not know where to begin. Will their

insurance cover the costs? Where do

they find an appropriate vendor or

even an appropriate doctor to write

the prescription? Our clinics answer all

these questions and more and present

families with a single point of contact

and an unflinching advocate and

partner throughout the process. The

clinics are just another example of our

ability to innovate to meet the needs of

those we serve.

You will also read about the amazing

new educational/therapeutic spaces at

our Horizon High School. To provide

the best possible services, we must

remain on the cutting edge, which

means having the very best possible

facilities and equipment. In addition to

these rooms, our high school added a

therapeutic fitness park in the spring

of 2015 and is now working on plans

for an incredible new life skills room.

Our elementary school is just finishing

a marvelous new vision training room.

Ongoing change is critical to success

and we will continue to push ourselves

to improve each year.

Enjoy the issue!

Warmly,

Purna Rodman Conare

CONTACT USDavid BishopEditor

(973) 763-9900, ext. 1601

dbishop@cpnj.org

Like us on

facebook.com/CerebralPalsyofNorthJersey

Follow us on @cpofnorthjersey

www.cpnj.org

www.horizonschoolsnj.org

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ADULT DAY PROGRAM LAUNCHES NEWSLETTERIn the computer room at CPNJ’s Orange Adult Training Center in September, an intense meeting was underway. Staff member Julius Joseph was standing, peppering the group with questions and taking down notes as each person replied. “Sharnise- did you pick up any good gossip today?” Sharnise told the group that Lateefah just bought some new clothes and that Daniel is a huge fan of pizza. “Great work- we’ll use that!” exclaimed Julius. After some further discussions, Julius shows the group some graphics to choose the look for the soon-to-be-published first issue of their newsletter, The Orange.

“I was trying to develop a concept that would be fun for both our consumers and our staff members,” said Julius. “When I mentioned the idea of a consumer newsletter, everyone was really excited so we just kept pushing to make it happen.” Program participants brainstormed to come up with various columns, including their gossip column, What’s the Juice? “The newsletter allows a lot of our consumers to play a role according to their strengths and interests,” said Julius. “Whether you are doing interviews, making copies or sorting pages, you are part of a team and have the enjoyment of creating something. This is what we are about as a program and as an agency- being innovative and creative and finding new ways to have everyone engaged.”

Initiatives like The Orange are part of a transition in the programming at CPNJ’s adult programs to focus on pre-vocational and vocational training. Creating a newsletter,

Staff members at the Orange show off their first issue

while a lot of fun for program participants, also develops skills in computers, office work, writing, collaboration and more.

The Orange is seeking donations of items to support their training and operation, including a digital camera and computer components (keyboards, mice). To help, please call the development office at (973) 763-9900, ext. 1602.

On December 1st, CPNJ celebrated GivingTuesday, a national day of charitable giving designed to counterbalance the consumerism of Black Friday and Cyber Monday. To celebrate, the agency paid tribute to those who support CPNJ by posting “UNselfies” - photos of people engaged in selfless acts - on our agency Facebook page in the weeks leading up to Giving Tuesday. This year, families of Horizon Elementary School and Horizon High School also made gifts to post photos of their children paying tribute to those who help them throughout the year- siblings, friends, babysitters, staff members and others. On Giving Tuesday itself, CPNJ supporters also made charitable donations.

“We raised a total of more than $5,000 to support our programs,” said event organizer and CPNJ’s Coordinator of Volunteers, Corry DeMarco. “This was our second year of conducting a Giving Tuesday campaign and we plan to continue each year. It is a great way to pay tribute to our volunteers and others who support us all year and an ideal way to remind ourselves of what really matters.”

“UNSELFIE” CAMPAIGN RAISES OVER $5,000

CPNJ group home resident JK (second from left) with volunteers Jacob Messeri, Evan Berney, and Michael Marcus

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HORIZON HIGH UNVEILS NEW VOCATIONAL TRAINING & SENSORY ROOMSHorizon High School recently unveiled two new rooms: an all-new vocational training room and a vastly expanded sensory integration room.

HERBERT CASPERT VOCATIONAL TRAINING CENTERProviding vocational opportunities is a key component of the curriculum at Horizon High School. The new vocational training center was designed to be highly versatile— the configuration and equipment allow students to experience a wide range of vocational settings and challenges that will help prepare them for a variety of work opportunities in the community.

We would like to extend our deepest thanks to the Alfiero & Lucia Palestroni Foundation And the Caspert Family for making all of this possible.

Thank you also to the following staff for all their work on the new rooms: Jesus Aceitano, Galo Aguayo, Theodore Groh, Melissa Higgins, Dina Krupka, Harvey Lott, Oscar Lozano, Caryn McLellan.

Students use power tools to practice woodworking and produce products for sale.

A mock office allows students to learn tasks such as handling mailings.

Specialized equipment allows students to design and make their own screen-printed t-shirts.

Students use the retail area to work on hanging, folding, organizing and displaying clothing.

Cutting the ribbon on the new vocational room: (from left to right) Purna Rodman Conare, CEO of CPNJ, Dr. Angelica Diaz-Martinez, Sr. VP for Operations at CPNJ. Dr. Chris Lynch, Principal of Horizon High, Livingston Deputy Mayor Al Anthony and Mayor Michael Silverman, Mitchell, Bernice, Shari & Jason Caspert.

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HBC SENSORY ROOM & PHYSICAL THERAPY GYMCreating one of the premiere therapy spaces in the region. Our amazing new sensory room represents a major expansion and enhancement of our previous sensory room to include the very latest state-of-the-art equipment. In the adjacent room is a completely renovated Physical Therapy Gym that provides a warm, relaxed atmosphere for physical therapy.

The rooms were designed to be highly functional in light and darkness. With the lights out, the rooms have a planetarium feel, with glowing stars that move, bubble light columns and colored fiber optic wires.

A “spider cage” allows therapists to use bungee cords to support a student’s limb or bodyweight to focus on therapeutic goals.

The new PT gym includes a huge rock climbing wall that is already a favorite with students.

A steel frame allows therapists to have as many as four students at a time suspended in swings.

A tactile mural of a dragon (made by students in the new vocational training room) runs along two walls of the new sensory room.

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Continued from page 1

by their particular private insurer or Medicaid. This requires the input of an occupational or physical therapist as well as a pediatric physiatrist. “By developing a school-based clinic,” explained Michelle, “we are able to bring together a pediatric physiatrist, equipment vendors and our own expert therapists to provide guidance and save families an enormous amount of time.”

The clinics are held twice each month and last up to five hours each. Students, at the recommendation of family members, physicians or staff members, are evaluated to determine if they would benefit from a new piece of equipment. If so, Michelle reaches out to equipment vendors to arrange for demonstrations of different products. Once the appropriate item is identified, Michelle works with each family to follow the specific requirements of the insurer, which may involve obtaining prescriptions from doctors and therapists, letters, face-to-face meetings and paperwork. “An insurer can take up to 60 days to make a decision,” said Michelle. “I serve as the family’s advocate, lobbying to move this process as quickly as possible.”

Even when a family does everything required, roughly 70% of items are initially denied by insurers. “Many families don’t understand that there are multiple levels of appeal and they will have to fight to get the equipment they need,” said Michelle. “That’s why I’m here – to be their advocate throughout the entire process, to stand with them and fight for what these children need.” The challenges can seem overwhelming- Joe’s wheelchair cost close to $20,000 and involved 74 different individually billed pieces. “The billing process is so confusing,” said Michelle. “Insurers and vendors both issue paperwork that can lead to families paying for items they should not be paying for.”

That was the case for another Horizon family. Michelle worked with the family for months to get a new wheelchair for their son. The child had outgrown his old chair, which had become inoperable. Another parent donated their child’s old wheelchair to the school and Michelle arranged for the young student to borrow it while they worked to obtain a new one. When they finally succeeded in obtaining the new chair, the family was told that their “out of pocket” cost for the wheelchair was upward of $4,000 for numerous components of the chair that the vendor was claiming were not covered by insurance. Michelle intervened and clearly explained to the family and the

vendor that the family did not owe for most of the billed items and that the cost to them should be only $200. “It’s a constant battle,” said Michelle “and it wears on special needs families, who often just don’t have the time or energy to keep up. My role is to get into the trenches and fight for them and for what their child deserves.”

The clinics also serve to help maintain students’ current medical equipment. Even some growth in children may leave them feeling uncomfortable with their equipment. Michelle is able to ask for help from vendors in maintaining equipment and making small adjustments that have a significant impact on the students. “The volume of business we do with our equipment vendors allows us to have certain minor repairs and growth issues addressed without even going through the insurance process,” explained Michelle. “This in and of itself is a huge help to families, saving them both time and money. We serve students from age three to age 21. Their medical equipment must evolve with their changing bodies and it’s our responsibility to be there for them throughout their time with us. I think that’s what makes Horizon Schools so special- we are continually improving and expanding our services to best serve our students and their families.”

CPNJ honored its dedicated cadre of volunteers at its annual volunteer recognition event on October 25th at Horizon High School. The event treated volunteers to dinner and a few rounds of Indeedy Musical Bingo. MC Jess Indeedy played songs in place of calling numbers while volunteers competed for prizes. “We want to acknowledge our volunteers,” said CPNJ’s Coordinator of Volunteers, Corry DeMarco, “but we don’t want a traditional and somewhat dull awards ceremony. We work hard to create a unique, fun and memorable evening for everyone.”

CPNJ THANKS VOLUNTEERS WITH MUSICAL BINGO

Volunteers enjoying musical bingo.

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Tribute GiftsIf you would like to remember someone with an

“in memory of” gift or celebrate a special occasion with an “in honor of” gift, please contact the CPNJ

development office at (973) 763-9900, ext. 1602. We will notify the person of your choosing with a special

card telling them that a gift was made.

In Honor Of GiftsFor: Ginny MuchinskiBy: Bette Hanauer

For: Lianna HalkyardBy: Carolyn Degroot Chris & Nicole Halkyard Edwin & Joan Halkyard Martin Halkyard Mark Michalski Richard Starks

For: Michael MarcusBy: Caren Mitchell

For: Jessica MarcusBy: Caren Mitchell

For: Jack TorreyBy: Juan C. & Jean F. Cappello

In Memory Of GiftsFor: Hazel O. QuinnBy: Jacob, Doris & James Schroeder

For: John RitterBy: Robert & Candy Matarazzo

For: Barry Lhormer, Carolyn Schreiber & Peter BlockBy: Ronald & Doreen Safier

For: Catherine BrolsmaBy: Maureen Brennan David & Dianne Brolsma Colleen Moriarity Pasquale J. & Patricia R. Taranto Robert Schultz & Tonia Ostrow Gregory & Agnes Zimmer

CPNJ VOLUNTEERS AT WORK

Watson the therapy dog visited with students at Horizon High School on January 19th.

Students from Golda Och Academy visited Horizon Elementary School on January 20th to do art projects with Horizon students. The visit was part of a longtime, ongoing partnership between the schools.

On December 4th, students from Paulo Freire Charter School in Newark visited both Horizon Schools as part of their “Be the Change Day”. At the elementary school, volunteers and students created winter paintings while learning about bird migration. At the high school, students formed teams and created “balloon rockets” which they raced with each other.

For: Delaney KurdycaBy: Marilyn Hiller

For: Maxine MyersBy: Phyllis Lusskin

For: Amanda MachemerBy: Elaine Morales

For: Stephen BurkeBy: Richard Starks

For: Brooke PlumsteadBy: Lawrence & Deborah Stryker

For: Ed & Nancy ZorenskyBy: Lonnie & Bette Hanauer

Cerebral Palsy of North Jersey220 South Orange AvenueSuite 300 Livingston, NJ 07039

NON-PROFIT ORG.U.S. POSTAGE

PAIDPERMIT NO. 345CALDWELL, NJ

VOLUNTEER SPOTLIGHT ON…MICHAEL & TRICIA WALTERS

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The face of Michael Walters was just barely visible above the toys stacked one on top of another in each of his arms. He rode the elevator up to CPNJ’s administrative office, where he set them all gently down on a conference table before heading down to his car to gather more. It was obvious from his focus, pace and organization that this was nothing new to him. In fact, he and his wife, Tricia, have been staunch supporters of CPNJ for eight years.

“When our son, Aidan, was born, he needed early intervention services

and received them through CPNJ,” recalled Michael. Aidan did extremely well in early intervention and was able to enroll in public school a few years later. “We were so thankful that we wanted to do something to help others and to give back,” said Michael. Michael and Tricia established the Aidan K. Foundation (aidank.org), which is dedicated to collecting donations to support special needs families. “

Michael learned about a volunteer opportunity reading to students at CPNJ’s Horizon Elementary and

began volunteering in 2008. Soon after, he learned of the school’s annual Wheelin’-n’-Walkin’ fundraiser and he and Tricia sponsored a student, raising funds for the event, walking with the student on the day of the event as well as bringing other volunteers along to help. They have continued to sponsor multiple students each year. Six years ago, the Walters launched a toy drive for early intervention families, each year collecting toys for more than 50 children. “A lot of folks don’t understand the need among our early intervention families,” said Donna Castellano, Director of CPNJ’s early intervention program. “We are so grateful to have people like Michael and Tricia – they understand and care about our families and have really made a difference.”

“Tricia and Mike are exceptionally dedicated people,” said Corry DeMarco, CPNJ’s Coordinator of Volunteers. “They committed themselves to impacting the lives of others for the better, and that is precisely what they’ve done.”

Return Service Requested

Michael Walters delivers holiday toys to the early intervention staff.