Amazing Kids Winter 2014

A Publication of The Children’s Institute of Pittsburgh winter2014

inside this issue

also insidedonor profile � � � � � � � � � � �09sharing our knowledge � � 18board of directors� � � � � � � 19planned giving� � � � � � � � � � 20donor events � � � � � � � � � � � 21waiting children � � � � � � � � 22where are they now � � � � � 23news briefs � � � � � � � � � � � � 24community calendar � � � �26amazing wish list � � � � � � � 28

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smoothing the transitionAt age 21, students become ineligible for special education services� The Children’s Institute is responding by expanding and intensifying our already extensive “transition” services�

12the gift we’ve been givenMeet Hailey and Alex: two different young people with the same rare condition� They’re both benefiting from the only program of its kind in the world: the Center for Prader-Willi Syndrome at The Children’s Institute�

guiding families through the maze of medical complexity When a child requires treatment from multiple healthcare professionals and organizations, parents often struggle with the many appointments, communications, and insurance issues� Sometimes the result can be a life-threatening emergency� A new initiative will help kids with medical complexity and their families—and transform healthcare in the process�

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creditsDavid K. Miles, MEd, MPM President and CEO 412.420.2398, [email protected]

Helene Conway-Long, MBA, CFRE Vice President, Institutional Advancement 412.420.2201, [email protected]

Writing Cosgrove Communications, LLC

Design Mizrahi, Inc.

Photography Josh Franzos, Anna Lee-Fields

Since 1902, The Children’s Institute of Pittsburgh has dedicated itself to supporting the life needs of children and families with special needs.

being where we’re neededWhat do you do when many families can’t get to the treatment their kids need? If you’re The Children’s Institute, you respond creatively and compassionately� 10

on the coverTyler Simpson bravely worked through recovery from a major brain injury� Then he went home—and he and his family faced a new set of challenges�

miles ahead

A message from our president

Some organizations ask themselves how they can cope in a time of great change�

For more than a century, The Children’s Institute has asked a different, more focused question: how can we best respond to the changing needs of the children and families we serve?

The answers to that question have always guided the development of our programs� We survive—and even thrive—by evolving our work in direct response to the evolving needs of kids and families�

We work hard to maintain that productive rhythm of need-and-response� Periodically, we do in-depth assessments of the communities we serve, and they often reveal the early presence of important needs� Then, in our strategic planning process, we design responses that will effectively and compassionately meet those needs�

In this issue, you’ll see evidence of that process� One example: the main story is about our new Family-Centered Care Coordination initiative, developed because families of children with medical complexity tell us that they need support in arranging and tracking the myriad resources their children require for optimum health� We are excited about the initiative, which has the potential to improve children’s health, transform service delivery and help control healthcare costs�

A generous funder of the new care coordination initiative recently said, “What you do at The Children’s Institute is courageous—it’s not easy to keep changing�”

While we’re grateful for the compliment, we don’t see our actions as courageous� That word describes the remarkably brave kids and families whose evolving needs we proudly serve—every day� For us, that’s simply our mission�

Sincerely,

David K. Miles, MEd, MPMPRESIDENT AND CEO

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guiding families through the maze of medical complexity

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The previous November, as Tyler waited to cross a street, a trailer being pulled by a passing truck swung onto the sidewalk and slammed into the teen—as his family watched in horror�

Tyler incurred severe brain trauma and other significant injuries� His life was saved during a month at Children’s Hospital� Then, still comatose and unable to walk, talk or even swallow, he came to The Children’s Institute of Pittsburgh� In six intensive months of medical and nursing care and therapies, the brave young survivor regained his quality of life to a remarkable degree� By mid-June, he was able to go home to live with his grandmother, aunt, uncle and cousins�

June 18, 2013 was the first day of the rest of Tyler Simpson’s life. That’s the day the lanky 14-year-old with the big smile was discharged from The Children’s Institute of Pittsburgh.

It was also the day new and different challenges began for his family.

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But Tyler still had a way to go—because after a serious accident or illness, the healing process can continue for years� Like many recovering from a brain injury, Tyler will continue to work on his gait, attention span, cognitive abilities, emotional responses and ability to take nutrition by mouth�

All of that requires extensive medical, therapeutic and other services—and it’s up to the family to coordinate every element� It’s an enormous job, requiring knowledge, skills, and vast amounts of time� If something slips through the cracks, the results can be emergency department visits, acute hospitalizations—or worse�

Tyler’s one of the lucky kids� His aunt, Rachel Taylor, left her job to help care for him, so she has the time as well as the ability to stay on top of all his care needs�

Tyler’s grandmother, Anne Scarry, says, “We had no idea how involved it would be� The Children’s Institute had set us up with services before we came home—but then it was up to us, and it’s been a huge learning process� Rachel is so organized and she does a great job, but we could use some support�

“And what about families who don’t have the time or the ability? They have nowhere to turn� It would be so good if someone would step up to help�”

Now Someone Is Stepping UpA new Children’s Institute initiative will improve both health and healthcare for thousands of kids who need and deserve the best possible support—and it will even help control costs in the process�

The Children’s Institute is preparing to launch a 26-month “proof of concept” initiative in which all the aspects of care will be coordinated for kids who, like Tyler, have complex medical needs�

The goal: to optimize the children’s health and quality of life by ensuring that kids get the services they need when they need them�

Why is care coordination essential today? Advances in medicine have led to increased survival of children and young people with complex medical needs, either resulting from a sudden illness or injury or present from birth�

Nationally, fewer than 1% of children are described as “medically complex”—but those children account for more than one third of all pediatric healthcare costs� It’s estimated that children with medical complexity can annually see as many as 10 to 20 healthcare and related providers�

In 23 counties in Western Pennsylvania, approximately 7,700 kids under age 18 are medically complex—and, in a recent Children’s Institute community needs assessment, families identified care coordination as a much-needed service�

Tyler’s Aunt Rachel was able to leave her job to help coordinate all of the aspects of her nephew’s care needs.

What about families who don’t have the time or the ability? They have nowhere to turn.

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The families say that their kids’ care is often fragmented—that multiple providers often don’t communicate with each other, and that many don’t have much experience with specific health conditions, particularly less common ones� Some may prescribe medications that cause problems in another specialist’s area of expertise, leaving the families scrambling to find solutions�

Loving Moms and Dads— But Not Healthcare Experts“Coordinating care for a child with complex medical needs is something many parents just cannot do,” says Beverly Farinelli, BSN, MHA, Chief Nursing Officer at The Children’s Institute� “They’re loving moms and dads—but they’re not healthcare experts, and often they’re unaware of available resources� Additionally, they just don’t have the time—they have to work, and there are other kids in the family who need their attention, too�”

When care coordination is flawed, the results can be disastrous� Worst of all are the health emergencies that could have been prevented, but that produce pain and suffering for the kids� The kids miss school,

the parents miss work, and healthcare costs rise� It’s a situation with no winners�

High-quality care coordination can make all the difference� Bev Farinelli says, “The beauty of effective care coordination is that it creates a rhythm and a harmony in which all the resources work synergistically rather than oppositionally—and the child can stay healthier�”

The Children’s Institute is ideally suited to provide that vital service, with more than a century of coordinating care for young inpatients and working with community healthcare and other resources to prepare patients and families for life after discharge�

“The Children’s Institute has established patient- and family-centered care as a priority,” says Dr� Maryanne Henderson, Chief Medical Officer at The Children’s Institute� “That priority is underscored by coordination of the many facets of care needed to maximize quality of life for children and their families� We feel a strong commitment to supporting these families long after they have left the hospital environment�”

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Comprehensive, Collaborative, Coordinated: How It Will WorkThe new physician-directed Family-Centered Care Coordination initiative will begin by enrolling 200 children with three diagnoses: acquired brain injury (like Tyler Simpson’s), spinal cord injury and pain disorders�

For each child, the first step will be an assessment to identify needs� Both short- and long-term goals will be set in collaboration with the family and providers�

Then a plan of care will be created to include the full spectrum of services needed to meet the goals� In accordance with evidence-based best practices, services may include wellness, prevention, inpatient and outpatient specialty care, follow-up visits, referrals, testing, assistive devices and equipment, mental health care, dental care, respite services, insurance and community-based resources�

Once the plan is created, registered nurse care coordinators located at The Children’s Institute and throughout the region will work in partnership with the children’s health care providers, ensuring a logical and complete flow of care and productive communication among providers and insurers�

At the same time, health coaches will work directly with families and children (in person, by phone, and by telecommunication), ensuring that everyone understands and can comply with care plans, including all necessary follow-ups�

In parallel, social workers will coordinate related family needs with available community-based resources—for example, special education services, transportation to appointments, or food banks for family nutrition�

“Effective and compassionate care coordination looks at the whole child and at the context in which the child functions,” says Bev Farinelli� “It helps remove the barriers to compliance with the plan of care—and to optimizing the health of the child�”

Continuous monitoring as the plan is implemented will help each child and family stay on track—and periodic re-assessment will allow updates and adjustments to the child’s plan� The initiative will go even further, quantifying important factors such as family stress levels and other quality-of-life issues�

The monitoring, using a standardized method, will allow aggregated, de-identified results from The Children’s Institute to be compared with national benchmarks�

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Benefitting Families and the Community

Thanks to generous community support for the proof-of-concept initiative, the care coordination services will initially be provided at no cost to the families�

Over the next 26 months, the initiative will coordinate care for 3,800 children and young people�

The expected outcomes are logical, in line with goals set out by the Institute for Healthcare Improvement, a national nonprofit that has become a leader in healthcare systems thinking:

• Better health through a decrease in emergency room visits, acute hospitalizations and school absences (many kids receive health-related services through schools, so missed school can compromise health)

• Better healthcare through an increase in the number of children receiving services in timely ways, and with appropriate insurance coverage

• Lower healthcare costs through a decrease in expenditures for emergency room visits and acute care hospitalizations and even from caregiver absences from work

The idea of care coordination for children and young people with medical complexity has powerful supporters� Among them are the American Academy of Pediatrics Council on Children with Disabilities, the Institute of Medicine’s Committee on Quality of Health Care

in America, the US Department of Health and Human Services, and the Children’s Hospital Association (CHA)�

Why, then, is care coordination not more common? Primarily because it has typically not been reimbursed�

However, The Children’s Institute’s new initiative has been developed with input from major insurers� Forecast to be sustainable in its fourth year, the initiative may produce healthcare cost savings in the 5-10% range for enrolled children�

That would make the initiative a replicable regional and national model� The prospects are promising enough that payers say they want to talk with The Children’s Institute about care coordination contracts as the initiative develops and proves itself�

Meanwhile, Tyler is doing well� He’s enjoying the company of his cousins—Logan, 14, Karraghan, 18, and Cassady, 11—and benefiting from the hard work and investment of time by his personal care coordination team: his aunt and his grandmother�

But many thousands of families are not able to effectively coordinate the care needed by their kids with medical complexity, and those children and young people—and their families—can face grave consequences�

Tyler’s grandmother, Anne Scarry, says, “We’re blessed to be able to do this, but we see that other families are not able to� We are so glad that The Children’s Institute will step up to help those families and their children get what they need�”

Forecast to be sustainable in its fourth year, the initiative may produce healthcare cost savings in the 5-10% range for enrolled children.

Tyler, center, with his “best buds” cousins, Logan and Karraghan.

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Highmark Foundation is a private, charitable organization of Highmark Inc. that supports initiatives and programs aimed at improving health, well-being and quality of life for individuals who reside in the communities served by Highmark Inc. The Foundation strives to support evidence-based programs that impact multiple counties and work collaboratively to leverage additional funding to achieve replicable models.

For more information, visit www.highmarkfoundation.org

The Children’s Institute is operating at a high level in its efforts to transform service delivery� This new initiative in care

coordination can only result in positive outcomes for children, families and the healthcare system,” says Highmark Foundation President Yvonne Cook�

She is explaining why the Foundation has chosen to provide generous support for The Children’s Institute’s Family-Centered Care Coordination initiative�

The 26-month proof-of-concept initiative is designed to demonstrate how coordinated, collaborative, communicative care can improve the health of kids with medical complexity—and, along the way, improve the healthcare system and help control costs�

Highmark Foundation is familiar with The Children’s Institute’s rigorous needs assessment and strategic planning processes that resulted in the initiative�

“To us,” says Yvonne Cook, “that means the organization has done its due diligence: you’ve looked at your population, you’ve identified service delivery gaps, and you know how your own strengths can allow you to fill those gaps and ensure that children get exactly what they need�”

Strengthening service delivery systems is one of Highmark Foundation’s four areas of focus� The others are chronic disease, family health and healthy communities�

Coordination of care for kids with medical complexity has typically been the responsibility

of families—but many families don’t have the expertise or the time needed to coordinate care effectively� When that happens, the health of the children can suffer—and healthcare costs can rise�

Supporting families with expert care coordination represents transformative change in service delivery�

“We fund pilots and proof-of-concept initiatives because we’re always interested in seeing whether positive results can be reproduced elsewhere,” says Yvonne Cook�

She adds, “We know that The Children’s Institute is expert at coordinating care for their medically complex inpatients, so it’s logical for them to move to working with outpatients� They have the thought leadership, the passion, and the commitment to do this right—and we believe the new initiative has the potential to become a powerful replicable model�”

Highmark Foundation Supports Family-Centered Care Coordination

donor profile

This new initiative in care coordination can only result in positive outcomes for children, families and the health care system.Yvonne Cook HIGHMARK FOUNDATION PRESIDENT

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Telepresence: being where we’re neededAn extensive “telepresence” infrastructure to be used across all of The Children’s Institute’s service areas will diminish distance, improve access, and generate revenue.

The Hospital: tele-health and tele-consultingThe Children’s Institute has extensive experience treating conditions that other healthcare professionals rarely encounter� Peer-to-peer tele-consultations by our physicians, therapists, behavioral health specialists, dietitians and others will help professionals elsewhere help their patients�

Discussions have begun with other organizations to provide the services of our therapists, who will work via telepresence with the facilities’ on-site providers� And our clinical dietitians are beginning to provide, via telepresence, nutrition planning for facilities such as group homes whose clients have special dietary needs—for example, people with Prader-Willi syndrome�

Telepresence can also allow our staff to provide direct care to certain patients, sparing them the rigors of travel� For example, therapists can follow up with patients they’ve treated in person, observing the patients doing their prescribed exercises and making corrections and suggestions�

Patients and families can be supported effectively in their communities, with—for example—family education delivered by telepresence, or using telepresence to evaluate whether a patient’s home requires accessibility modifications�

nearly half our inpatients travel

or more for services

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To prepare for the initiative, The Hospital is converting an existing building office into a small television studio with a high-resolution video system� Facilities and practices with which The Children’s Institute will consult regularly will be similarly equipped� For visual communication with families, a secure version of Skype can be used on families’ home computers�

“This is an entirely new direction for the Hospital,” says Brooke Racicot, PT, PCS, Senior Director of Rehabilitation Services, “and it will allow us to have an even greater impact on the health of patients�”

The Day School: tele-education and tele-consultingVideo imaging of classrooms can provide great benefit to students and classroom staff—in Pittsburgh and elsewhere�

A system already in use at The Day School allows teachers to record significant behaviors, and even review events leading up to the behaviors to help determine causes� It’s an important professional development tool, helping staff design effective educational and behavioral interventions�

The Day School is beginning to consult with educators elsewhere in similar fashion; those educators capture video of students’ behaviors, and The Day School works to help determine causes and design responses� A number of school districts are particularly interested in asking The Day School to support their work with students who have autism�

Videos are also useful in sharing significant school behaviors with students’ families and physicians�

The Pennsylvania Department of Education has identified the need for increased options for service delivery—for example, therapies—in schools, because rural areas can find it difficult to secure high levels of expertise� The Day School’s experienced therapists can be available to work with paraprofessionals or newer therapists in distant districts�

Project STAR: tele-visitation, tele-training, and tele-consultingProject STAR families will be able to visit—“live” via telepresence—with kids they’ll be fostering or adopting, and will receive training in skills needed to meet the children’s needs�

In the Family Reunification Program, tele-visitation will bring together incarcerated or otherwise at-a-distance parents and the children with whom they are working to reunite�

And Project STAR staff members will consult with other social services professionals about placement of kids with special needs, and about building and supporting families�

As always at The Children’s Institute, continuous tracking and measurement will assess the impact and effectiveness of elements of the telepresence initiative�

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transition preparation smoothing the passage

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Complicating the situation is this fact: for young people with significant disabilities, services including education, nurturing care and socialization are plentiful until they reach age 21� After that, services are not nearly so well funded—and therefore not so robust, not so amply staffed and not so widely available�

One result: young adults with disabilities can end up simply sitting at home� That’s why families say that having a child with severe disabilities turn 21 can be “like falling off a cliff�” It’s an issue of national concern�

In response—after seeking feedback from families and staff members—The Children’s Institute is expanding and intensifying our already extensive “transition” services�

All students ages 18-21 will be taught in special transition classrooms, with highly individualized work—usually with a 1:3 or 1:2 staff:student ratio�

Since the facilities students move on to after graduation typically offer a staff:young adult ratio of 1:7 or 1:8, it’s more important than ever that graduates be as self-sufficient as possible�

That’s why the focus of the transition work is on increasing independence in activities such

The level of medical complexity of students at The Day School has increased dramatically in recent years: most students deal with multiple physical, cognitive and behavioral challenges. That often makes typical post-secondary education or work impossible.

At age 21, students become ineligible for the special education services from which they previously benefitted—for many, throughout their entire childhood.

The level of medical complexity of students at The Day School has increased dramatically in recent years: most students deal with multiple physical, cognitive and behavioral challenges. That often makes typical post-secondary education or work impossible.

as dressing, eating, and toileting; self-sufficiency in leisure pursuits (such as listening to music or watching videos, often using assistive devices); community experiences including volunteerism and socialization; and self-advocacy—for example, knowing how, and being willing, to ask for something�

The expanded transition program staff will work even more closely with community resources including adult training facilities, supported employment sites, day programs, and organizations that appreciate having young volunteers who are coping with daily challenges� The staff also will work with communities to expand the options available to young people with disabilities�

Since the need for transition programming is widespread, The Day School’s initiative may in its next phase be made available to 18-to-21-year-olds with special needs outside The Day School, and eventually to young adults between ages 21 and 25�

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the gift we’ve been given

treating a rare and challenging

condition

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In Pittsburgh, Pennsylvania, 8-year-old Hailey tries not to giggle as she crouches behind a sofa. She doesn’t want to give away her position as she plays hide-and-seek with a nurse on the hospital unit.

In Skokie, Illinois, 25-year-old Alex is intent, carefully grooming a chestnut mare as his community-based program’s job coach lends encouragement. When Alex is finished, his Dad will pick him up and they’ll go to the gym to exercise.

Hailey and Alex are different people at different life stages—but they have two major things in common: both

have Prader-Willi syndrome, and both of their families brought them to The Children’s Institute for treatment�

The Children’s Institute’s Center for Prader-Willi Syndrome is the world’s only comprehensive inpatient program treating the syndrome in patients across the life spectrum� The first patient was admitted in 1981, and, to date, patients have been as young as 4 and as old as 64�

Prader-Willi is a rare genetic syndrome whose effects can include developmental delays, short stature, low muscle tone, obesity, and insatiable hunger� Behavioral issues can include outbursts—sometimes violent—and extreme anxieties�

When the syndrome is not well controlled, complications can be life-threatening, among them heart failure, hypertension, diabetes, pulmonary issues, cellulitis, and lymphedema�

When a patient arrives, the first step is an assessment whose results shape the

individualized program� The multidisciplinary team implementing the program includes physiatrists (physical medicine specialists), pediatricians and nurses; psychiatrists and psychologists; physical, occupational, speech/language, recreational and music therapists; nutritionists; and teachers, who work with school-age patients�

The highly structured days include both group and individual work� There’s also time for relaxation and socialization; the program is often patients’ first opportunity to meet others who have the syndrome�

Patients are treated on two spacious 16-bed units� Private and semi-private rooms surround large, bright areas for exercise, recreation, and dining� Furnishings are bariatric—designed to bear considerable weight�

“The combination of the professional disciplines, the comprehensiveness of the approach and the highly specialized treatment milieu is, I believe, the key to the success we have with both pediatric and adult patients,” says Dr� Gregory Cherpes, Director of the Center and of Behavioral Health�

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That combination regularly draws patients from across the country—and the world: recent inpatients have come from Canada and Saudi Arabia� The Children’s Institute always has translation services available for patients and families who do not speak English; one recent patient required a translator fluent in Haitian Creole�

Families are an essential part of treatment, which typically spans about two months� Family members—whether local or at a distance—work closely with the treatment team, learning how to manage issues such as challenging behaviors and food security once the patient is back at home�

There is no cure for Prader-Willi syndrome—but treatment can produce enormous positive changes that make the syndrome manageable�

Alex had two courses of treatment at The Children’s Institute� During the first, when he was 17, he changed his eating habits and improved

his social skills and self-motivation� The 5’3” teen weighed 238 pounds on admission; by discharge, he’d lost nearly 40 pounds—and, with superb support from his parents, continued his weight loss at home, maintaining at a healthful 118 pounds�

Then, as he moved through late adolescence into young adulthood, uncontrollable behavioral issues developed� He returned to The Children’s Institute, where a second course of treatment, including therapies and medications, turned the behaviors around�

Hailey completed her two-month stay in December of 2013, and made great progress� Her mom, Jennifer Brock, says, “Back home in Georgia the professionals we saw for years just didn’t know very much about this illness, and we got some poor advice about dealing with it� Then I found The Children’s Institute online, and got to an endocrinologist who highly recommended it and was glad to refer us here�

“They were so good with her; they kept her occupied and moving� And they helped me learn a lot about her nutritional needs, and also about what she can and can’t control� I’m more patient now, and that helps both of us�”

Alex’s dad, Bob Ashe, says, “They saved and changed my son’s life, and helped him be the best person he can be� I cannot tell you how much we appreciate the gift we’ve been given�”

During her stay, Hailey made progress in all of her therapies, pictured here happily concentrating while painting in occupational therapy.

Alex has continued and sustained the progress made during his time at The Children’s Institute.

They saved and changed my son’s life, and helped him be the best person he can be.

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Gregory Cherpes, MDDirector of The Center for Prader-Willi Syndrome and Behavioral Health Programs at The Children’s Institute

Psychiatric Medications and the Individual with PWS

Dr. Cherpes provided an overview of the classes of psychiatric medications and areas of considerations when prescribed for an individual with Prader-Willi syndrome. This session was intended for parents and other nonmedical caregivers.

Roxann Diez Gross, PhD, CCC/SLP Director of Research at The Children’s Institute of Pittsburgh

Understanding Swallowing Function: Identification of a Problem, Evaluation and Treatment

Dr. Gross presented at the Provider’s Conference, which focused on the science of PWS and was intended primarily for those who work in the field. Dr. Gross used both lay and medical terminology to discuss research pertaining to dysphagia or difficulty swallowing, a common symptom among individuals with Prader-Willi syndrome.

Amy McTigheInpatient Teacher at The Children’s Institute

Making Schools Work

Ms. McTighe participated in a panel presentation for parents detailing the Individualized Education Plan (IEP) process. The first half of the session was a mock IEP meeting in which Ms. McTighe played the role of the school psychologist. The second half of the session was a panel format in which the audience asked questions about the IEP process and special education law.

Erin Murray, MS, LPCBehavioral Coordinator at The Children’s Institute

Lauren Martin, RD, LDN, Clinical Dietitian at The Children’s Institute

Managing Behaviors while Managing Weight Loss

Ms. Murray and Ms. Martin co-presented an approach to reducing anxiety and behavioral concerns surrounding meal times through the use of structure, routine and special diet.

Haley Seiler, MT-BCMusic Therapist at The Children’s Institute

Exploration of the Role of Music Therapy and its Benefits to Individuals with Prader-Willi syndrome

Ms. Seiler’s session explored the role and benefits of music therapy with individuals with Prader-Willi syndrome. Throughout her presentation, she discussed and used interactive mock sessions to share the clinical music therapy interventions that assist patients in accomplishing their goals.

Every day, staff members at The Children’s Institute help kids by putting knowledge to work. And, often, our staff members share their knowledge with others – through conferences, panels, speaking engagements and other means. That’s a way of helping kids elsewhere, and helping to keep professional standards high everywhere. Each issue of Amazing Kids lists some representative examples of knowledge-sharing from recent months. This issue will focus on one particular conference – the 32nd Prader-Willi Syndrome Association (USA) national conference in Orlando, Florida – at which six of our experts from The Center for Prader-Willi Syndrome were key presenters.

sharing our knowledge

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2013/14board of directors

Front row, left to right: Lisa C. Fagan, Secretary; Michael J. Hannon, Chair; David K. Miles, President and CEO; Pamela W. Golden, Vice Chair; J. Keefe Ellis Jr., Vice Chair. Back row, left to right: Susan Baker Shipley; F. Brooks Robinson Jr.; Romayne L. Botti; Susan L. Boyle; Jonathan M. Kamin; J.A. Katarincic Jr.; Nita Wadhwani; Patricia Suzanne Chesko; Marshall L. Balk, MD; Christina Cardoso.

ChairMichael J� Hannon

Vice ChairsJ� Keefe Ellis Jr�Pamela W� Golden

SecretaryLisa C� Fagan

TreasurerCarolyn D� Duronio

President and ChiefExecutive OfficerDavid K� Miles, MEd, MPM

Chief Medical OfficerMaryanne J� Henderson, DO

DirectorsMarshall L� Balk, MDGregory B� BenckartRomayne L� BottiSusan L� BoyleChristina CardosoPatricia Suzanne CheskoJohn R� DennyShawn FoxHolly Hatcher-FrazierJoseph E� Imbriglia, MDJonathan M� KaminJ� A� Katarincic Jr�Ellen P� KesslerAllan MacDougall IIIJames W� MarczakF� Brooks Robinson Jr�Susan Baker ShipleyMerrill P� StabileNita Wadhwani

Associate MembersNancy M� ArmstrongThomas J� BachmanMary Florence BrownMrs� Davis C� Burroughs Jr�Paulette P� CantwellHenry C� CohenN� John Cooper, DPhilSandy W� CôtéAnn H� CutterGeorge M� EganSheila C� FineHenry J� GailliotLillian H� GoldsmithGeorge C� GreerJoan M� KaplanMarcia L� KeehnPradeep K� Khosla, PhDEileen L� LaneAnn M� McGuinn

Michele M� McKenneyB� Gordon Nelson IIIBarbara K� NelsonMaureen S� O’BrienJudy G� PapernickJames S� Pasman Jr�Ruth S� PerfidoPatricia R� RooneyJean McD� ScottLea H� SimondsAnn E� SullivanHarry A� Thompson IIGinny ThornburghJohn K� ThornburghJamee W� ToddJames W� UmmerFarley W� WhetzelSusan C� WilliamsMargot B� Woodwell

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A new member of the Mary Irwin Laughlin Society, which acknowledges donors who have included The Children’s

Institute in their estate planning, has long, strong connections with The Children’s Institute�

Joseph F� Falgione and his late wife Donna first encountered The Children’s Institute in the early 1960s when their son, Jason, enrolled at The Day School� Jason is on the autism spectrum�

planned giving:A Generous Gift Acknowledges Long, Strong Ties

“Everyone thinks well of Jason; he’s a great person and a reliable worker,” says Materials Management Coordinator David Wahl�

Today Jason, 50, lives independently� He’s an accomplished musician, playing piano, organ, and clarinet in community and church groups�

Joe and Jason are great Pirates fans, often traveling across the country for games and to Bradenton for spring training� Are they happy about the most recent season? Joe laughs and says, “It’s about time!”

Joe and Donna moved to Longwood at Oakmont, where they arranged appearances by musicians and speakers� The family believes in the value of volunteering, and Joe, Donna and Jason also reached out to several retirement homes in the area, presenting popular monthly singalong events�

Joe and Donna were longtime regular donors to The Children’s Institute’s Annual Fund—and, not long ago, Joe made a generous planned gift�

Why? “The Children’s Institute never just sits back,” says Joe� “They work hard to anticipate what kids will need and then they make it happen� We’ve always been pleased to support them, and I want that to continue after we’re both gone�”

Donna, a reference librarian, soon began volunteering in The Children’s Institute’s library, reading stories to young patients� Along the way, she shared her experiences with her husband Joe, a music librarian who ultimately became associate director of the Carnegie Library system�

Jason thrived at The Day School, where his considerable musical talent was nurtured� As part of his pre-graduation transition planning, he worked in Materials Management� Hired full-time soon after graduation, he still works there each day, checking in and distributing supplies and equipment�

Create your own amazing legacy of hope for children with complex needs by remembering The Children’s Institute in your will or trust.

To learn more about planned giving visit www.amazingkids.org/plannedgiving or contact Jill Murchak, Development Manager for Leadership & Planned Gifts at 412.420.2173 or [email protected]

an amazing legacy

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donor events

Glitzburgh Charity Fashion ShowGlitzburgh was a fabulous night of philanthropy, fashion and fun! For the second year in a row, The Children’s Institute was the recipient of proceeds from this glamorous event� Six of our amazing kids shared the runway with local celebrities including Pittsburgh Steelers Ziggy Hood and Chris Carter� Each amazing kid modeled a custom-made outfit representing his or her “superpower�” Hosted by 100�7 STAR’s Kelly Langenohl, Glitzburgh 2013 featured fall fashion, live music, door prizes, a silent auction, cocktails, light hors d’oeuvres and more�

Bill Toms & Hard Rain Benefit ConcertA benefit concert for The Children’s Institute organized by Joyce and Bill Toms was held on Thanksgiving Eve – Wednesday, November 27, 2013, at the Hard Rock Café� The evening was filled with music from Bill Toms and Hard Rain and Jill West & Blues Attack� In addition to great music, there was a silent auction and a special raffle, and all proceeds went to The Children’s Institute�

Patient Davanna Feyrer working the runway at Glitzburgh.

Our amazing models from left to right, Jamari, Satchel, Francis, Alexis and Davanna.

Bill Toms and Hard Rain performing at the benefit concert.

Children shine brightest in families.

Aaron, 14 Aaron is a friendly and likable 14-year-old who’s earning straight A’s in the ninth grade� He loves animals, and, whenever he has a chance, he thoroughly enjoys hand-held electronic devices such as video games� His biggest desire is to have a forever family with two parents who enjoy going on vacations� Aaron will do best in a family that is structured and has clear and consistent expectations� He has contact with his older brother, and sees himself in a family with older siblings� Aaron is legally free for adoption�

Joey, 14 Joey is a loving and outgoing teenager with a quick smile and a real capacity for enjoying life� He loves receiving attention and being nurtured by adults� Joey loves playing football, basketball, and baseball, and he enjoys fishing� His favorite sports teams are the Pirates and the Steelers, and his favorite school subject is art� Joey needs an organized and consistent environment that will provide him with unconditional love and support that will last a lifetime� All family types will be considered�

waiting childrenWhether the goal is adoption or reunification with birth families, Project STAR does everything possible to place children with safe, nurturing, forever families. These children are just two of the many who are waiting for homes and families to call their own.

For more information about Aaron, Joey and other waiting children, please contact Russ McCurdy at 412-244-3083 or [email protected].

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where are they now?

Satchel was featured in an “Amazing Kids” story about literacy learning at The Day School� The first time she read aloud, she spun around and took a delightful little bow�

Satchel was born with Rubinstein-Taybi syndrome� When she was just days old, her parents were told she’d never be able to walk or talk; they were advised to institutionalize her�

Her parents refused the advice—and Satchel has defied all those early predictions�

Today she’s 17 and still making excellent progress as a Day School student� Reading is a favorite subject, and, while her syndrome limits her ability to speak, Satchel is adept with her iPad, constructing sentences an app speaks out loud for her� She’s good with functional math, and she works hard in speech/language and occupational therapies�

In all Satchel does, her personality shines through� She’s sociable and happy to share, but she can also be quietly self-sufficient� “Satchel is involved in so much,” says her teacher Antoinette Sparte� “She zips around the school helping to set up the lunchroom, she’s involved in a dance group and more� Everyone knows and loves her�”

At home with her mom, Jackie, Satchel is easy-going—except when it comes to her dad’s 2-year-old son, whom she views as a typical pesky toddler� She often returns from visiting her

dad and immediately tells her mom “My little brother is bad!” Then she grins�

Satchel is a fashion plate—and, along with several other kids from The Day School, The Hospital, and Project STAR, she had a chance to showcase her love of clothes when she modeled in the annual “Glitzburgh” fashion show, which this year benefitted The Children’s Institute�

Wearing a lovely silvery black dress, and with hair and makeup beautifully done by the show’s organizers, Satchel enjoyed walking the runway so much that she did it twice� The audience was delighted�

Mom Jackie says, “God gave us a challenge and a blessing rolled into one, and we focus on the blessing� Satchel is a delight and we love her very much�

“She doesn’t get to do some of what typical 17-year-olds do, but she’s done things they don’t—like the fashion show� She’s been in brochures and feature articles like this and even on billboards� Somehow she will leave her mark on the world� I just know it�”

Satchel Heidelberg

God gave us a challenge and a blessing rolled into one, and we focus on the blessing. Satchel is a delight and we love her very much.

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For the second consecutive year, The Children’s Institute of Pittsburgh has been voted one of Western Pennsylvania’s best places to work, coming in second in the large company category�

The prestigious honor came from The Pittsburgh Business Times, and resulted from online employee surveys completed across the region�

“It’s wonderful recognition,” says Linda Allen, Vice President of Human Resources at The Children’s Institute� “It belongs to our employees, since it’s because of them that we’re able to be an amazing place, doing such good work for children and families�”

The awards luncheon was held on Halloween, with staff members from the “best places” encouraged to wear costumes� The Children’s Institute’s representatives, from across the organization, dressed as minions from the “Despicable Me” movies—and won the prize for the best team costume�

news brief:

A “Best Place to Work” – Again!

It belongs to our employees, since it’s because of them that we’re able to be an amazing place, doing such good work for children and families.

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A Children’s Institute nurse received a Cameos of Caring award at a recent gala event at the David L� Lawrence Convention Center�

Carol Stonebraker, BS, RN, a team leader on the Brain Injury Unit, was cited as a bedside nurse “demonstrating excellence in nursing care, serving as an advocate for patients and families and embodying the essence of the nursing profession�”

Carol came to The Children’s Institute in 1985—but not as a nurse� With a freshly minted BS in vocational rehabilitation counseling, she’d realized that she preferred hands-on care, and decided to volunteer� When a job as a healthcare aide opened up, she took it—and was so good at it that physicians and nurses encouraged her to become a nurse�

news brief:

Nurse Recognized for Professional Excellence

That’s exactly what she did, earning her RN as she continued to work at The Children’s Institute�

Carol says, “Working with children and their families over a period of months is a great privilege, and the best compliment ever is families saying, ‘I can tell you love your patients as if they were your own kids�’”

Carol lives in Plum Boro with her husband Dave, their daughter Alyssa, and their son, David�

The Cameos of Caring program, presented by The University of Pittsburgh’s School of Nursing, benefits an endowed nursing scholarship fund�

Working with children and their families over a period of months is a great privilege.

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Brain Injury Parent Support Group

The Children’s Institute 1405 Shady Ave, Pittsburgh Room S221

6:00 – 7:00pm

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Project STAR Adoption, Foster Care, and Respite Care Information Meeting1

The Children’s Institute 1405 Shady Ave, Pittsburgh

6:30 – 8:30pm

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Project STAR Adoption and Foster Care Information Meeting1

The Children’s Institute 1598 Virginia Avenue, Monaca

6:30 – 8:30pm

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Project STAR Growing Families Through Adoption


1:00 – 4:00pm

29sat

Laps for Love, hosted by Edgeworth and Osborne Elementary Schools

TBD

TBD

26wed

Pain Rehabilitation and RND Parent Support Group


5:00 – 6:00pm

6thur



6:00 – 7:00pm

5wed



6:30 – 8:30pm

13thur

Grand Rounds: Pediatric Rehabilitation


7:30am: Registration 8:00am: Speaker

Continuing Medical Education (CME) credits available� No registration is required� For more information, please call 412�420�2270�

12wed





12wed



6:30 – 8:30pm

20thur

Presidents’ Day No school for students of The Day School.17

mon

In Service Day No school for students of The Day School.28

fri

The Day School dismissed at 1:30pm

5 12 19 26The Day School dismissed at 1:30pm

5 12 19 26



5:00 – 6:00pm

6thur

Carnegie Mellon University’s Greek Sing

Soldiers and Sailors 4141 Fifth Avenue, Pittsburgh

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6:00 – 7:00pm

2wed

april may



6:30 – 8:30pm

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6:30 – 8:30pm

15thur



6:30 – 8:30pm

10thur



6:30 – 8:30pm

8thur





9wed





14wed

The Day School dismissed at 1:30pm

2 9 16 30The Day School dismissed at 1:30pm

7 14 21 28



5:00 – 6:00pm

3thur



5:00 – 6:00pm

1thur

Spring Formal


TBD

3sat

No School! Spring Break!

18 25



6:00 – 7:00pm

7wed

1 Project STAR information meetings are a free opportunity to learn more about adoption, foster care and providing short-term respite care. To RSVP for a meeting, please contact Rob Henry at 724.544.8870 or 412.244.3048, or [email protected].

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Rifton Adapted Tricycle One of a child’s milestone moments is learning to ride a tricycle, but for our students in The Day School this can be a challenge� You can help our amazing kids overcome this challenge by donating a tricycle that is adapted to meet their special needs� Learning to ride a tricycle can increase independence and provide a fun physical activity!

$2,200 needed for one medium tricycleFOR THE DAY SCHOOL

Suite of 5 iPads with Heavy Duty Protective Cases Amazing kids in The Hospital often have special communication needs� With the latest tablet technology, they can share their thoughts in a way they would have imagined� If granted, these five iPads would be shared throughout The Hospital and used as a motivational learning tool� Enclosed in special protective cases, these lightweight devices can be used time and time again, while staff members explore educational “apps” to make learning and communicating more accessible to our amazing kids�

$3,240 needed for one suite of five iPadsFOR THE HOSPITAL

Spikeball Game Set Spikeball is a game with rules like volleyball that children with various abilities can play and enjoy� If donated, this game will be used in both group and individual therapy� Your donation can help develop essential skills for our amazing kids to reach their greatest potential�

$200 needed for one game setFOR THE HOSPITAL

For information about donating funds for the purchase of items from the Amazing Wish List, please contact Lauren Vermilion at 412.420.2204 or [email protected]

amazing wish list

You can have an amazing effect on the lives of children with special needs by helping to purchase vital equipment. The Children’s Institute’s Amazing Wish List includes small to moderate requests that can be fulfilled with a single gift. Your donation will go toward the wish you fulfilled.*

8 Televisions, DVDs players and Cable for Heasley HouseThe Marie Reinhardt Heasley House provides a special “home away from home” for families of inpatients at The Hospital� Located on our Squirrel Hill campus it is an eight bedroom, wheelchair-accessible home that can accommodate up to eight families� Unfortunately, the Heasley House doesn’t have cable or private TVs and DVD players� Give our amazing families the opportunity to relax by granting this wish!

$3,000 needed for one setFOR THE HOSPITAL

* If the final cost of an item is less than the amount contributed, any remaining funds will be dedicated to complementary needs or, if not possible, released into the general fund.

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missionThe Children’s Institute is an independent, licensed nonprofit organization located in the Squirrel Hill section of Pittsburgh that is dedicated to promoting the quality of life for children, young people and their families by providing a specialized continuum of services that enable them to reach their potential�

The Children’s Institute was designed specifically as a rehabilitation facility, and its administration and staff are committed to increasing accessibility for all persons� If you have accessibility concerns, please call The Children’s Institute at 412.420.2485.

The official registration and financial information of The Children’s Institute may be obtained from the Pennsylvania Department of State by calling toll free within Pennsylvania, 1.800.732.0999� Registration does not imply endorsement� The Children’s Institute is a 501 (c)(3) nonprofit organization, contributions to which are tax deductible to the fullest extent permitted by law�

serviceThe Children’s Institute of Pittsburgh does not exclude, deny benefits to, or otherwise discriminate against any person on the grounds of race, color, nation of origin, religious creed, disability, ancestry, sex, age, sexual orientation or genetic information in employment or in admission to, participation in or receipt of the services and benefits of any of its programs and activities, whether carried out by The Children’s Institute of Pittsburgh directly or through a contractor or any other entity whom The Children’s Institute of Pittsburgh arranges to carry out its programs and activities�

This policy statement is in accordance with the provision of Title VI of the Civil Rights Act of 1964, Section 504 of the Rehabilitation Act of 1973, the Age Discrimination Act of 1975, the Americans with Disabilities Act of 1990, Regulations of the U�S� Department of Health and Human Services issued pursuant to the acts, Title 45 Code of Federal Regulations Part 80, 84, 91 and other applicable Federal, State, and Local Laws and Regulations� For more information about this policy, please contact Administration at 412.420.2400.

For more information about The Children’s Institute, please call 412.420.2400 or log on to www.amazingkids.org. For TDD use, contact us through the Pennsylvania Relay Service� Voice: 1.800.654.5988 TDD: 1.800.654.5984.

give an amazing giftYour support allows us to carry out our mission of improving the quality of life for children, young people and their families—no matter the cost. Because of you, we have been able to provide more than $40 million in free and uncompensated care over the past decade.

We deliver vital care to children—regardless of their families’ ability to pay� But we can’t do it without you�

Thank you for standing by our amazing kids!

For more information on making a gift, contact Lauren Vermilion, [email protected], or call

412.420.2204

amazingkids.org

December 20, 2013

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Amazing Kids Winter 2014