A Publication of The Children’s Institute of Pittsburgh
winter 2014
winter 2014
inside this issue
being where
we’re needed
14
What 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
02
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.
on the cover
Tyler 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.
12
smoothing
the transition
At age 21, students become
ineligible for special education
services. The Children’s Institute
is responding by expanding and
intensifying our already extensive
“transition” services.
the gift we’ve
been given
Meet 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.
also inside
donor profile���������������������� 09
credits
David 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
sharing our knowledge�����18
board of directors�������������19
planned giving������������������ 20
donor events ���������������������21
waiting children�����������������22
where are they now �������� 23
news briefs������������������������ 24
community calendar ������ 26
amazing wish list�������������� 28
Since 1902, The Children’s Institute of Pittsburgh has dedicated itself to
supporting the life needs of children and families with special needs.
miles
ahead
A message from our president
Some organizations ask themselves how they
can cope in a time of great change.
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, MPM
PRESIDENT A ND CEO
AMAZING KIDS - WINTER 2014
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?
1
AMAZING KIDS - WINTER 2014
guiding families
through the maze of
medical complexity
2
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.
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.
AMAZING KIDS - WINTER 2014
T
he 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.
3
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.”
What about
families who don’t
have the time or the
ability? They have
nowhere to turn.
Now Someone Is Stepping Up
A 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.
AMAZING KIDS - WINTER 2014
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.
4
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.
5
AMAZING KIDS - WINTER 2014
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.”
AMAZING KIDS - WINTER 2014
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,
6
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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The 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.
AMAZING KIDS - WINTER 2014
Comprehensive, Collaborative,
Coordinated: How It Will Work
7
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
AMAZING KIDS - WINTER 2014
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
8
Forecast to be
sustainable in its
fourth year, the
initiative may
produce healthcare
cost savings in the
5-10% range for
enrolled children.
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.”
Tyler, center, with his “best buds”
cousins, Logan and Karraghan.
donor profile
Highmark Foundation
Supports Family-Centered
Care Coordination
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.
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.”
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
Coordination of care for kids with medical
complexity has typically been the responsibility
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 evidencebased programs that impact multiple counties and work collaboratively to leverage additional funding to achieve replicable models.
For more information, visit www.highmarkfoundation.org
WINTER 2014
T
he 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.
AMAZING KIDS
“
9
Telepresence:
being where we’re needed
An 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-consulting
The 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.
10
nearly half our
inpatients travel
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.
or more
for services
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.
“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-consulting
Video 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-consulting
Project 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-adistance 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.
AMAZING KIDS - WINTER 2014
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.
11
transition preparation
AMAZING KIDS - WINTER 2014
smoothing the passage
12
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.
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.
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
At age 21, students
become ineligible for
the special education
services from which they
previously benefitted—
for many, throughout
their entire childhood.
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.
AMAZING KIDS - WINTER 2014
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.
13
AMAZING KIDS - WINTER 2014
the gift we’ve
been given
14
treating a rare
and challenging
condition
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-andseek 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.
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.
AMAZING KIDS - WINTER 2014
H
ailey 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.
15
They saved and
changed my son’s
life, and helped him
be the best person
he can be.
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
Alex has continued and sustained the progress made
during his time at The Children’s Institute.
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.
16
17
AMAZING KIDS - WINTER 2014
sharing our
knowledge
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.
Gregory Cherpes, MD
Erin Murray, MS, LPC
Director of The Center for Prader-Willi Syndrome and
Behavioral Health Programs at The Children’s Institute
Behavioral Coordinator 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 McTighe
AMAZING KIDS - WINTER 2014
Inpatient Teacher at The Children’s Institute
18
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.
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-BC
Music 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.
board of
directors 2013/14
Chair
Michael J. Hannon
Vice Chairs
J. Keefe Ellis Jr.
Pamela W. Golden
Secretary
Lisa C. Fagan
Treasurer
Carolyn D. Duronio
President and Chief
Executive Officer
David K. Miles, MEd, MPM
Chief Medical Officer
Marshall L. Balk, MD
Gregory B. Benckart
Romayne L. Botti
Susan L. Boyle
Christina Cardoso
Patricia Suzanne Chesko
John R. Denny
Shawn Fox
Holly Hatcher-Frazier
Joseph E. Imbriglia, MD
Jonathan M. Kamin
J. A. Katarincic Jr.
Ellen P. Kessler
Allan MacDougall III
James W. Marczak
F. Brooks Robinson Jr.
Susan Baker Shipley
Merrill P. Stabile
Nita Wadhwani
Associate Members
Nancy M. Armstrong
Thomas J. Bachman
Mary Florence Brown
Mrs. Davis C. Burroughs Jr.
Paulette P. Cantwell
Henry C. Cohen
N. John Cooper, DPhil
Sandy W. Côté
Ann H. Cutter
George M. Egan
Sheila C. Fine
Henry J. Gailliot
Lillian H. Goldsmith
George C. Greer
Joan M. Kaplan
Marcia L. Keehn
Pradeep K. Khosla, PhD
Eileen L. Lane
Ann M. McGuinn
Michele M. McKenney
B. Gordon Nelson III
Barbara K. Nelson
Maureen S. O’Brien
Judy G. Papernick
James S. Pasman Jr.
Ruth S. Perfido
Patricia R. Rooney
Jean McD. Scott
Lea H. Simonds
Ann E. Sullivan
Harry A. Thompson II
Ginny Thornburgh
John K. Thornburgh
Jamee W. Todd
James W. Ummer
Farley W. Whetzel
Susan C. Williams
Margot B. Woodwell
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.
AMAZING KIDS
WINTER 2014
Maryanne J. Henderson, DO
Directors
19
planned giving:
A Generous Gift Acknowledges
Long, Strong Ties
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.
“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.”
AMAZING KIDS - WINTER 2014
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.
20
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.
an amazing legacy
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]
donor events
Glitzburgh Charity
Fashion Show
Glitzburgh 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 custommade 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.
Patient Davanna Feyrer working the
runway at Glitzburgh.
Our amazing models from left to
right, Jamari, Satchel, Francis, Alexis
and Davanna.
Bill Toms & Hard Rain
Benefit Concert
Bill Toms and Hard Rain performing at the benefit concert.
AMAZING KIDS - WINTER 2014
A 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.
21
waiting
children
Children shine brightest in families.
Whether 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.
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.
AMAZING KIDS - WINTER 2014
Joey, 14
22
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.
For more information about Aaron, Joey and other waiting children, please
contact Russ McCurdy at 412-244-3083 or [email protected].
where are they now?
Satchel Heidelberg
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.”
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.”
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.
AMAZING KIDS - WINTER 2014
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
23
news brief:
A “Best Place to Work” – Again!
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.”
AMAZING KIDS - WINTER 2014
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.
24
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:
Nurse Recognized for
Professional Excellence
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.
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.
AMAZING KIDS - WINTER 2014
Working with
children and their
families over a period
of months is a great
privilege.
25
community calendar winter 2014
february
march
5 12 19 26
5 12 19 26
The Day School dismissed at 1:30pm
wed
5
Brain Injury Parent Support Group
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S221
The Day School dismissed at 1:30pm
wed
5
6:00 – 7:00pm
thur
6
Pain Rehabilitation and
RND Parent Support Group
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S218
12
Grand Rounds:
Pediatric Rehabilitation
The Children’s Institute
1405 Shady Ave, Pittsburgh
thur
6
wed
12
13
The Children’s Institute
1405 Shady Ave, Pittsburgh
17
Presidents’ Day
No school for students
of The Day School.
thur
Project STAR Adoption and Foster
Care Information Meeting1
20
The Children’s Institute
1598 Virginia Avenue, Monaca
6:30 – 8:30pm
AMAZING KIDS - WINTER 2014
wed
26
26
Laps for Love, hosted by Edgeworth
and Osborne Elementary Schools
TBD
TBD
Grand Rounds:
Pediatric Rehabilitation
The Children’s Institute
1405 Shady Ave, Pittsburgh
Continuing Medical Education (CME)
credits available. No registration is
required. For more information, please
call 412.420.2270.
thur
13
6:30 – 8:30pm
mon
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S218
7:30am: Registration
8:00am: Speaker
Continuing Medical Education (CME)
credits available. No registration is
required. For more information, please
call 412.420.2270.
Project STAR Adoption, Foster Care,
and Respite Care Information Meeting1
Pain Rehabilitation and
RND Parent Support Group
5:00 – 6:00pm
7:30am: Registration
8:00am: Speaker
thur
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S221
6:00 – 7:00pm
5:00 – 6:00pm
wed
Brain Injury Parent Support Group
Project STAR Adoption, Foster Care,
and Respite Care Information Meeting1
The Children’s Institute
1405 Shady Ave, Pittsburgh
6:30 – 8:30pm
thur
20
Project STAR Adoption and Foster
Care Information Meeting1
The Children’s Institute
1598 Virginia Avenue, Monaca
6:30 – 8:30pm
sat
22
fri
28
sat
29
Carnegie Mellon
University’s Greek Sing
Soldiers and Sailors
4141 Fifth Avenue, Pittsburgh
In Service Day
No school for students
of The Day School.
Project STAR Growing
Families Through Adoption
The Children’s Institute
1405 Shady Ave, Pittsburgh
1:00 – 4:00pm
april
may
2
9 16 30
7 14 21 28
The Day School dismissed at 1:30pm
The Day School dismissed at 1:30pm
wed
2
Brain Injury Parent Support Group
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S221
thur
1
6:00 – 7:00pm
Pain Rehabilitation and
RND Parent Support Group
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S218
5:00 – 6:00pm
thur
3
Pain Rehabilitation and
RND Parent Support Group
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S218
sat
3
wed
9
The Children’s Institute
1405 Shady Ave, Pittsburgh
wed
7
thur
10
Brain Injury Parent Support Group
The Children’s Institute
1405 Shady Ave, Pittsburgh
Room S221
6:00 – 7:00pm
7:30am: Registration
8:00am: Speaker
Continuing Medical Education (CME)
credits available. No registration is
required. For more information, please
call 412.420.2270.
The Children’s Institute
1405 Shady Ave, Pittsburgh
TBD
5:00 – 6:00pm
Grand Rounds:
Pediatric Rehabilitation
Spring Formal
wed
14
Grand Rounds:
Pediatric Rehabilitation
The Children’s Institute
1405 Shady Ave, Pittsburgh
7:30am: Registration
8:00am: Speaker
Project STAR Adoption, Foster Care,
and Respite Care Information Meeting1
Continuing Medical Education (CME)
credits available. No registration is
required. For more information, please
call 412.420.2270.
The Children’s Institute
1405 Shady Ave, Pittsburgh
6:30 – 8:30pm
thur
thur
17
Project STAR Adoption and Foster
Care Information Meeting1
8
The Children’s Institute
1598 Virginia Avenue, Monaca
Project STAR Adoption, Foster Care,
and Respite Care Information Meeting1
The Children’s Institute
1405 Shady Ave, Pittsburgh
6:30 – 8:30pm
6:30 – 8:30pm
25
No School! Spring Break!
15
Project STAR Adoption and Foster
Care Information Meeting1
The Children’s Institute
1598 Virginia Avenue, Monaca
6:30 – 8:30pm
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].
AMAZING KIDS - WINTER 2014
18
thur
27
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.*
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]
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 iPads
FOR THE HOSPITAL
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 tricycle
FOR THE DAY SCHOOL
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.
AMAZING KIDS - WINTER 2014
$200 needed for one game set
28
FOR THE HOSPITAL
8 Televisions, DVDs players and Cable for Heasley House
The 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, wheelchairaccessible 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 set
*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.
FOR THE HOSPITAL
give an amazing gift
Your 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
mission
service
The 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 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.
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.
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.
amazingkids.org
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.
NON-PROFIT ORG.
U.S. POSTAGE
PAID
PITTSBURGH, PA
PERMIT NO. 748
1405 Shady Avenue
Pittsburgh, Pennsylvania 15271-1350
Visit us online at www.amazingkids.org
Find us on Facebook at www.facebook.com/TheChildrensInstituteofPittsburgh
Follow us on Twitter @AmazingKidsPGH
Please recycle this publication when finished.
did you know?
Our new website launched on
December 20, 2013
Fully optimized
responsive
mobile site for smart
phones and tablets
Interactive
calendars
for the Day School
and other programs
Interactive
flip-through
feature for each
AmazingKids issue
make an
amazing gift
with the new online
donation system
visit our new website at www.amazingkids.org