NON-PROFIT ORG. U.S. POSTAGE PAID PITTSBURGH, PA PERMIT NO. 748
1405 Shady Avenue Pittsburgh, Pennsylvania 15217-1350
amazingkids A publication of The Children’s Institute
Visit our website at www.amazingkids.org Follow us on Facebook at www.facebook.com/TheChildrensInstituteofPittsburgh Please recycle this publication when finished.
SPECIAL ISSUE
If you would like to be added or removed from our mailing list, please call 412.420.2203 or visit our website at www.amazingkids.org/contact. When you ask to be removed from our mailing list, The Children’s Institute will make a reasonable effort to ensure you are not contacted again. The Children’s Institute does not sell, trade or forward mailing lists.
THE CHILDREN’S INSTITUTE
centersofexcellence Restoring Childhood after Brain Injury
Thanks to you, there’s no stopping any of our kids or this amazing life-changing place. We know how busy life can get at this time of year, but, please remember to add one more small thing to your list that will have a great impact. Make a gift to The Children's Institute and continue to help the amazing kids and families who turn to us all year ’round. To make your gift, use the enclosed remittance
envelope, visit www.amazingkids.org/donate, or contact Deb Desjardins at ded@the-institute.org, 412.420.2216.
Thank you for making an amazing gift today!
Finding the Answers One Student at a Time Meeting a Major League Challenge Rebuilding Families Recovering Mobility, Strength and Hope
WINTER 2013
THE CHILDREN’S INSTITUTE
centersofexcellence
milesahead
amazingkids Dear Friend of The Children’s Institute of Pittsburgh,
SPECIAL ISSUE WINTER 2013
4 8 13 16 18
Every day, The Children’s Institute meets the needs of the kids and families we serve.
Restoring Childhood after Brain Injury Even when a brain injury isn’t fatal, it can be devastating. Learn about The Children’s Institute’s Center for Acquired Brain Injury Rehabilitation through the experience of Davanna, who progressed from a deep coma to a full, happy life.
Finding the Answers. One Student at a Time Young twins Dylan and Cole struggled with the kinds of behavioral and communication issues that affect many kids with autism; but they’ve shown remarkable improvement. Learn how the Center for Autism helped.
Meeting a Major League Challenge Prader-Willi Syndrome is rare and complex, and the Center for Prader-Willi Sydrome offers the world’s only comprehensive inpatient treatment and rehabilitation program. See what makes it work for patients like William.
Rebuilding Families Sometimes families that have come apart can rebuild themselves in safe and healthful ways. See how the Center for Family Visitation is helping Sandra and her young son move toward reunification.
Recovering Mobility, Strength and Hope Rehabilitation after a spinal cord injury poses great challenges. The expert, comprehensive program offered by the Center for Spinal Cord Injury Rehabilitation team helps patients like Noah meet the challenge.
But as a mission-driven organization, and one of the area’s largest nonprofits, we regularly ask ourselves: how can we be sure we’ll respond as effectively tomorrow, as needs change and external circumstances — including the economics of healthcare — become ever more challenging?
22 24 25 26 28
News Briefs Donor Profile Board of Directors Community Calendar Amazing Wish List
ON THE COVER Davanna Feyrer is able to dance once again as she continues on the road to recovery from a life-altering brain injury.
CREDITS David K. Miles, MEd, MPM President and CEO 412.420.2398 dmi@the-institute.org Helene Conway-Long, MBA, CFRE Vice President, Institutional Advancement 412.420.2201 hcl@the-institute.org
Answers to that question come only from the kind of disciplined and energetic strategic planning process we recently completed. Vision 2016, our new strategic plan, results from months of thinking and research, informed by the wide-ranging expertise and experience of our Board and staff, and by thoughtful and caring input from families who know our services. In the months and years to come, you will see significant, positive changes as we implement the Plan. This issue of Amazing Kids highlights our new Centers of Excellence approach. It’s a way to broaden and deepen our work, to share what we know and — through research — to develop new knowledge, to advocate even more strongly for kids and families and to raise our profile so more people can know about the outstanding work done here. The Centers of Excellence are a major element of our path forward. Our commitment to those we serve has been unwavering for well over a century. But the ways in which we meet that commitment continue to evolve. During this holiday season and throughout the year, we are supremely grateful for the extraordinary support of the thoughtful, open-hearted individuals, businesses and foundations who help ensure that we’ll be able to serve children, young people and their families in all the years ahead. To you and your family, very best wishes for peaceful, healthful holidays and a fine 2013.
Sincerely,
Roya Kousari, MAM Marketing and Communications Director 412.420.2202 rko@the-institute.org Writing Cosgrove Communications, LLC
David K. Miles, MEd, MPM President and CEO
Design Dymun + Company Photography Josh Franzos John Sanderson Courtney Ferraro Harry Giglio
Winter 2013 :: AMAZING KIDS :: 1 ■
THE CHILDREN’S INSTITUTE
centersofexcellence
milesahead
amazingkids Dear Friend of The Children’s Institute of Pittsburgh,
SPECIAL ISSUE WINTER 2013
4 8 13 16 18
Every day, The Children’s Institute meets the needs of the kids and families we serve.
Restoring Childhood after Brain Injury Even when a brain injury isn’t fatal, it can be devastating. Learn about The Children’s Institute’s Center for Acquired Brain Injury Rehabilitation through the experience of Davanna, who progressed from a deep coma to a full, happy life.
Finding the Answers. One Student at a Time Young twins Dylan and Cole struggled with the kinds of behavioral and communication issues that affect many kids with autism; but they’ve shown remarkable improvement. Learn how the Center for Autism helped.
Meeting a Major League Challenge Prader-Willi Syndrome is rare and complex, and the Center for Prader-Willi Sydrome offers the world’s only comprehensive inpatient treatment and rehabilitation program. See what makes it work for patients like William.
Rebuilding Families Sometimes families that have come apart can rebuild themselves in safe and healthful ways. See how the Center for Family Visitation is helping Sandra and her young son move toward reunification.
Recovering Mobility, Strength and Hope Rehabilitation after a spinal cord injury poses great challenges. The expert, comprehensive program offered by the Center for Spinal Cord Injury Rehabilitation team helps patients like Noah meet the challenge.
But as a mission-driven organization, and one of the area’s largest nonprofits, we regularly ask ourselves: how can we be sure we’ll respond as effectively tomorrow, as needs change and external circumstances — including the economics of healthcare — become ever more challenging?
22 24 25 26 28
News Briefs Donor Profile Board of Directors Community Calendar Amazing Wish List
ON THE COVER Davanna Feyrer is able to dance once again as she continues on the road to recovery from a life-altering brain injury.
CREDITS David K. Miles, MEd, MPM President and CEO 412.420.2398 dmi@the-institute.org Helene Conway-Long, MBA, CFRE Vice President, Institutional Advancement 412.420.2201 hcl@the-institute.org
Answers to that question come only from the kind of disciplined and energetic strategic planning process we recently completed. Vision 2016, our new strategic plan, results from months of thinking and research, informed by the wide-ranging expertise and experience of our Board and staff, and by thoughtful and caring input from families who know our services. In the months and years to come, you will see significant, positive changes as we implement the Plan. This issue of Amazing Kids highlights our new Centers of Excellence approach. It’s a way to broaden and deepen our work, to share what we know and — through research — to develop new knowledge, to advocate even more strongly for kids and families and to raise our profile so more people can know about the outstanding work done here. The Centers of Excellence are a major element of our path forward. Our commitment to those we serve has been unwavering for well over a century. But the ways in which we meet that commitment continue to evolve. During this holiday season and throughout the year, we are supremely grateful for the extraordinary support of the thoughtful, open-hearted individuals, businesses and foundations who help ensure that we’ll be able to serve children, young people and their families in all the years ahead. To you and your family, very best wishes for peaceful, healthful holidays and a fine 2013.
Sincerely,
Roya Kousari, MAM Marketing and Communications Director 412.420.2202 rko@the-institute.org Writing Cosgrove Communications, LLC
David K. Miles, MEd, MPM President and CEO
Design Dymun + Company Photography Josh Franzos John Sanderson Courtney Ferraro Harry Giglio
Winter 2013 :: AMAZING KIDS :: 1 ■
THE CHILDREN’S INSTITUTE
centersofexcellence
“Excellence” with meaning Some organizations use the word “excellence” lightly. But at The Children’s Institute of Pittsburgh, excellence isn’t a buzzword — it’s a reality with profound meaning.
■ 2 :: AM AZ IN G KIDS :: Winter 2013
or decades, this organization has been at the forefront of helping patients with brain and spinal cord injuries achieve their maximum possible recoveries. As the incidence of autism has increased dramatically, we have responded with effective treatment, education and research. To help patients with a little-known but devastating condition called Prader-Willi syndrome, we’ve developed the world’s only comprehensive inpatient treatment and rehabilitation program. And for families who have come apart, our Family Visitation Program provides a structured and compassionate route toward reunification. Our work in these five areas is nationally — and, in some cases, internationally — known and respected. It is, in fact, excellent. But we believe there is always room for growth in excellence, through broadening and deepening these core services, through sharing what we have learned and through developing new knowledge. That is why our new strategic plan, Vision 2016, calls for formalizing and building upon our five Centers of Excellence.
To do that, we’ve developed an exacting framework of eight criteria for the Centers — a structure on which we can improve our excellence, and against which we can measure our work. The criteria are: • Expertise and best practices • Broad range of services and continuum of care, including community integration • Family-centered approach to service delivery • Results, not only in terms of good outcomes, but also in terms of effectiveness, efficiency and patient/family satisfaction • Research • Professional collaboration • Advocacy • External affirmation and recognition We have long met most of the eight criteria above. Expertise and best practices, for instance, are a hallmark, as are breadth of services, community focus and a family-centered approach. We will continue to maintain and surpass excellence in those areas. Additionally, we will now bring similar focus and commitment to the remaining criteria. For example, our young but rigorous research program is already producing results; however, while our work is acknowledged as excellent, it is time to further quantify our outcomes so that patients, payers and others can see clear evidence of our efficiency and effectiveness. We will do more to share our
knowledge and innovations — for instance, at professional gatherings and through publishing — so that the good work we do and the initiatives we have successfully implemented may have multiplied effect, benefiting patients and families elsewhere. We plan to advocate even more forcefully and frequently for our kids and families, helping to educate policymakers and the public about what children and youth with special needs require, and deserve. Finally, we have long been quiet about what we achieve every day for our patients and families. Now we are beginning to seek the affirmations and recognitions that testify objectively to the quality of our work. You will read about these aspirations, and much more, in the pages of this issue dedicated to our Centers of Excellence. Our organizational motto is Amazing Kids. Amazing Place. People who know our work understand exactly what that means. It’s an accurate reflection of the great courage, determination and spirit of our kids and families, and of the admirable skills, compassion and dedication of our staff. That is why, for The Children’s Institute of Pittsburgh, “excellence” isn’t a buzzword. It’s another word for “amazing.” ❖
Winter 2013 :: AMAZING KIDS :: 3 ■
THE CHILDREN’S INSTITUTE
centersofexcellence
“Excellence” with meaning Some organizations use the word “excellence” lightly. But at The Children’s Institute of Pittsburgh, excellence isn’t a buzzword — it’s a reality with profound meaning.
■ 2 :: AM AZ IN G KIDS :: Winter 2013
or decades, this organization has been at the forefront of helping patients with brain and spinal cord injuries achieve their maximum possible recoveries. As the incidence of autism has increased dramatically, we have responded with effective treatment, education and research. To help patients with a little-known but devastating condition called Prader-Willi syndrome, we’ve developed the world’s only comprehensive inpatient treatment and rehabilitation program. And for families who have come apart, our Family Visitation Program provides a structured and compassionate route toward reunification. Our work in these five areas is nationally — and, in some cases, internationally — known and respected. It is, in fact, excellent. But we believe there is always room for growth in excellence, through broadening and deepening these core services, through sharing what we have learned and through developing new knowledge. That is why our new strategic plan, Vision 2016, calls for formalizing and building upon our five Centers of Excellence.
To do that, we’ve developed an exacting framework of eight criteria for the Centers — a structure on which we can improve our excellence, and against which we can measure our work. The criteria are: • Expertise and best practices • Broad range of services and continuum of care, including community integration • Family-centered approach to service delivery • Results, not only in terms of good outcomes, but also in terms of effectiveness, efficiency and patient/family satisfaction • Research • Professional collaboration • Advocacy • External affirmation and recognition We have long met most of the eight criteria above. Expertise and best practices, for instance, are a hallmark, as are breadth of services, community focus and a family-centered approach. We will continue to maintain and surpass excellence in those areas. Additionally, we will now bring similar focus and commitment to the remaining criteria. For example, our young but rigorous research program is already producing results; however, while our work is acknowledged as excellent, it is time to further quantify our outcomes so that patients, payers and others can see clear evidence of our efficiency and effectiveness. We will do more to share our
knowledge and innovations — for instance, at professional gatherings and through publishing — so that the good work we do and the initiatives we have successfully implemented may have multiplied effect, benefiting patients and families elsewhere. We plan to advocate even more forcefully and frequently for our kids and families, helping to educate policymakers and the public about what children and youth with special needs require, and deserve. Finally, we have long been quiet about what we achieve every day for our patients and families. Now we are beginning to seek the affirmations and recognitions that testify objectively to the quality of our work. You will read about these aspirations, and much more, in the pages of this issue dedicated to our Centers of Excellence. Our organizational motto is Amazing Kids. Amazing Place. People who know our work understand exactly what that means. It’s an accurate reflection of the great courage, determination and spirit of our kids and families, and of the admirable skills, compassion and dedication of our staff. That is why, for The Children’s Institute of Pittsburgh, “excellence” isn’t a buzzword. It’s another word for “amazing.” ❖
Winter 2013 :: AMAZING KIDS :: 3 ■
centerofexcellence acquired brain injury
RESTORING CHILDHOOD AFTER BRAIN INJURY The young ballerina is as graceful as a swan as she moves through her lesson, her pretty face a study in concentration. But nearly four years ago, Davanna Feyrer suffered a life-threatening brain injury when the family car was destroyed by an 18-wheeler. Her prospects were bleak. After weeks of treatment in a local acute-care hospital, Davanna was brought to The Children’s Institute — still immobile and unresponsive, silent and stiff.
■ 4 :: AM AZ IN G KIDS :: Winter 2013
E
VEN WHEN A BRAIN INjuRY ISN’T FATAL, IT CAN BE DEVASTATINg. That’s why, after initial hospitalization stabilizes the patient, the decision about where treatment will continue is crucial. For children and adolescents, there is no better place than the Center for Acquired Brain Injury Rehabilitation, a Children’s Institute of Pittsburgh Center of Excellence.
Dr. Maryanne Henderson, Chief Medical Officer at The Children’s Institute, says, “Our patients — from infants through age 21 — come to us from local hospitals and from across the tri-state area. The younger ones have often been injured in car and ATV accidents, and sometimes from abuse; the older ones have mostly been hurt in car accidents, and sometimes from drug overdoses.” Special Venue, Multidisciplinary Treatment Team The complex and intensive process of rehabilitation takes place on a special 16-bed unit where the atmosphere is designed for low stimulation, with restricted access, subtle lighting and quiet privacy. But while the venue is important, it’s the people who make the program outstanding. The multidisciplinary team includes physicians, nurses, physical and occupational therapists, speech/language pathologists, neuropsychologists, nutritionists and teachers for school-age patients. Dr. Henderson says, “Communication among the team members is key, and ours is constant. We have both formal and informal staff meetings, and frequent conversations in between. We want to be certain we know all there is to know about each patient’s progress, so we can take a coordinated approach. “The staff’s passion for our patients is obvious: they’re assertive on each child’s behalf, and they’re proactive in staying current with best practices and seeking specialty brain injury certifications in their respective disciplines.” Family involvement is key. “So much of brain injury rehabilitation is education for caregivers,” says Dr. Henderson. “They can see changes in personality and behaviors, and understanding why those
things happen is important. Over time, we also teach families how they can help carry over therapies to the home environment.” The staff is nearing completion of a revised acquired brain injury manual for patients and families to use and share with others. All of the program’s resources were put to work for Davanna, even before she woke up. For example, therapists worked to help her regain head and trunk control and counter the reflexive tightening that can keep joints from regaining functional movement.
Winter 2013 :: AMAZING KIDS :: 5 ■
centerofexcellence acquired brain injury
RESTORING CHILDHOOD AFTER BRAIN INJURY The young ballerina is as graceful as a swan as she moves through her lesson, her pretty face a study in concentration. But nearly four years ago, Davanna Feyrer suffered a life-threatening brain injury when the family car was destroyed by an 18-wheeler. Her prospects were bleak. After weeks of treatment in a local acute-care hospital, Davanna was brought to The Children’s Institute — still immobile and unresponsive, silent and stiff.
■ 4 :: AM AZ IN G KIDS :: Winter 2013
E
VEN WHEN A BRAIN INjuRY ISN’T FATAL, IT CAN BE DEVASTATINg. That’s why, after initial hospitalization stabilizes the patient, the decision about where treatment will continue is crucial. For children and adolescents, there is no better place than the Center for Acquired Brain Injury Rehabilitation, a Children’s Institute of Pittsburgh Center of Excellence.
Dr. Maryanne Henderson, Chief Medical Officer at The Children’s Institute, says, “Our patients — from infants through age 21 — come to us from local hospitals and from across the tri-state area. The younger ones have often been injured in car and ATV accidents, and sometimes from abuse; the older ones have mostly been hurt in car accidents, and sometimes from drug overdoses.” Special Venue, Multidisciplinary Treatment Team The complex and intensive process of rehabilitation takes place on a special 16-bed unit where the atmosphere is designed for low stimulation, with restricted access, subtle lighting and quiet privacy. But while the venue is important, it’s the people who make the program outstanding. The multidisciplinary team includes physicians, nurses, physical and occupational therapists, speech/language pathologists, neuropsychologists, nutritionists and teachers for school-age patients. Dr. Henderson says, “Communication among the team members is key, and ours is constant. We have both formal and informal staff meetings, and frequent conversations in between. We want to be certain we know all there is to know about each patient’s progress, so we can take a coordinated approach. “The staff’s passion for our patients is obvious: they’re assertive on each child’s behalf, and they’re proactive in staying current with best practices and seeking specialty brain injury certifications in their respective disciplines.” Family involvement is key. “So much of brain injury rehabilitation is education for caregivers,” says Dr. Henderson. “They can see changes in personality and behaviors, and understanding why those
things happen is important. Over time, we also teach families how they can help carry over therapies to the home environment.” The staff is nearing completion of a revised acquired brain injury manual for patients and families to use and share with others. All of the program’s resources were put to work for Davanna, even before she woke up. For example, therapists worked to help her regain head and trunk control and counter the reflexive tightening that can keep joints from regaining functional movement.
Winter 2013 :: AMAZING KIDS :: 5 ■
centerofexcellence
acquired brain injury
Over the months of Davanna’s inpatient stay, the treatment team worked constantly with the family to set goals for the young patient, work intensively to meet them and then set new goals. As Davanna slowly progressed, the best assistive technologies — for example, a standing frame, wheelchairs and braces — helped preserve and promote basic body functions and increase Davanna’s mobility. Before a patient is discharged, a Children’s Institute team can visit the family’s home to help determine what accommodations and modifications may be needed. If the patient is a student, The Children’s Institute’s academic team works with the school to help ensure a smooth transition. Those resources, too, were marshaled for Davanna. Her former school wasn’t able to accommodate her needs, but another school nearby was. The Children’s Institute staff worked with the school, so that teachers, staff and students would understand Davanna’s condition and offer appropriate support. On a sunny afternoon more than seven months after her accident, and after nearly six months at The Children’s Institute, Davanna — with a great deal of support from her parents — slowly stood from her wheelchair and walked to the family car to head home.
Program Receives Rare Accreditation The program’s quality has resulted in accreditation by the highly respected Commission on Accreditation of Rehabilitation Facilities (CARF) as an Inpatient Brain Injury Rehabilitation Pediatric Specialty Program — one of only seven programs in the country, and the only one in Pennsylvania, to earn the accreditation. But the care and caring don’t end with a patient’s discharge from the Hospital. Outpatient therapies keep the momentum going. Davanna, for instance, is still receiving physical therapy at The Children’s Institute, and still making considerable progress. The family-centered approach continues with outreach and advocacy. For example, a monthly Brain Injury Support group offers sessions for both patients and families. And The Children’s Institute’s Chief Business Development Officer, jane Keim, is on the Board of the Brain Injury Association of Pennsylvania, which advocates vigorously for the multiple supports and services needed by patients and families.
It all adds up to the excellence that produces results like Davanna’s. An exceptionally caring family, great courage, and first-rate treatment brought Davanna back from her terrible injury, and today the lively 14-year-old enjoys her family, school, friends — and her beloved ballet. Davanna’s mom, Minetta Bowman, says, “The Aquired Brain Injury Rehabilitation program is special and wonderful. There is not just expertise; there is concern and compassion in everyone you encounter. Not many places can say that.” ❖
The program’s quality has resulted in accreditation by the highly respected Commission on Accreditation of Rehabilitation Facilities (CARF).
“
There is not just expertise; there is concern and compassion in everyone you encounter. Not many places can say that.
”
Minetta Bowman Davanna’s Mom ■ 6 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 7 ■
centerofexcellence
acquired brain injury
Over the months of Davanna’s inpatient stay, the treatment team worked constantly with the family to set goals for the young patient, work intensively to meet them and then set new goals. As Davanna slowly progressed, the best assistive technologies — for example, a standing frame, wheelchairs and braces — helped preserve and promote basic body functions and increase Davanna’s mobility. Before a patient is discharged, a Children’s Institute team can visit the family’s home to help determine what accommodations and modifications may be needed. If the patient is a student, The Children’s Institute’s academic team works with the school to help ensure a smooth transition. Those resources, too, were marshaled for Davanna. Her former school wasn’t able to accommodate her needs, but another school nearby was. The Children’s Institute staff worked with the school, so that teachers, staff and students would understand Davanna’s condition and offer appropriate support. On a sunny afternoon more than seven months after her accident, and after nearly six months at The Children’s Institute, Davanna — with a great deal of support from her parents — slowly stood from her wheelchair and walked to the family car to head home.
Program Receives Rare Accreditation The program’s quality has resulted in accreditation by the highly respected Commission on Accreditation of Rehabilitation Facilities (CARF) as an Inpatient Brain Injury Rehabilitation Pediatric Specialty Program — one of only seven programs in the country, and the only one in Pennsylvania, to earn the accreditation. But the care and caring don’t end with a patient’s discharge from the Hospital. Outpatient therapies keep the momentum going. Davanna, for instance, is still receiving physical therapy at The Children’s Institute, and still making considerable progress. The family-centered approach continues with outreach and advocacy. For example, a monthly Brain Injury Support group offers sessions for both patients and families. And The Children’s Institute’s Chief Business Development Officer, jane Keim, is on the Board of the Brain Injury Association of Pennsylvania, which advocates vigorously for the multiple supports and services needed by patients and families.
It all adds up to the excellence that produces results like Davanna’s. An exceptionally caring family, great courage, and first-rate treatment brought Davanna back from her terrible injury, and today the lively 14-year-old enjoys her family, school, friends — and her beloved ballet. Davanna’s mom, Minetta Bowman, says, “The Aquired Brain Injury Rehabilitation program is special and wonderful. There is not just expertise; there is concern and compassion in everyone you encounter. Not many places can say that.” ❖
The program’s quality has resulted in accreditation by the highly respected Commission on Accreditation of Rehabilitation Facilities (CARF).
“
There is not just expertise; there is concern and compassion in everyone you encounter. Not many places can say that.
”
Minetta Bowman Davanna’s Mom ■ 6 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 7 ■
centerofexcellence autism
FINDING
THE ANSWERS one student at a time One in 88 children, including 1 in 54 boys, has an autism spectrum disorder. Those are startling numbers; they are climbing rapidly; and, remarkably, many experts regard them as conservative.
HE CHILDREN’S INSTITuTE OF PITTSBuRgH HAS RESPONDED to what many are calling “the autism epidemic” with a robust, comprehensive — and effective — focus that includes education, treatment and research. Together, those three program areas constitute the Center for Autism Center of Excellence.
EDUCATION Helping the kids most severely affected by autism to learn, communicate and behave in socially acceptable ways is a significant challenge — one that’s successfully being met in The Day School’s Sheila and Milton Fine Classrooms for Students with Autism. A specialized, controlled-stimulation area of The Day School contains the ten Classrooms for Students with Autism. Each classroom accommodates six students and three staff members, plus specialty-subject teachers, therapists, dietitians and in-house consultants. Each student has a highly individualized education plan with specific learning, communication and behavioral goals. To achieve the goals, the entire staff uses the techniques of Applied Behavioral Analysis (ABA), a systematic, highly structured method of delivering instruction and reinforcement, all with a behavioral focus. The staff also uses a method called the Verbal Behavior Initiative (VBI), focused on helping the kids develop and use language as a means toward increasing appropriate behaviors and interpersonal skills.
At the time, Dylan had severe behavioral issues, and was able to eat only baby food and graham crackers. Like many kids with autism, he had major difficulties with food textures. Cole was quieter, a child who wanted to be alone and endlessly play out scenes from a favorite movie. Neither boy was toilet-trained. Today, Beth says, “I couldn’t have made a better choice for my boys.” To begin with, both boys are now fully independent in their toileting. Dylan no longer needs one-on-one behavior support and, at lunch time, he’ll happily munch a ham sandwich. Through a carefully phased approach, the sensory problems with food have resolved. Cole has been able to move to a less intensive classroom setting, and the once completely withdrawn child now reads stories to his friends during circle time.
Opening Up the World As the students learn communication skills and self-control, the world opens up: behaviors improve; thoughts, emotions, wants and needs are understood and expressed; and real learning becomes possible. Dylan and Cole — twin brothers just turning 12 — are great examples. Their Mom, Beth, moved the family across the country three years ago after research convinced her that The Day School was the best place to help her sons.
■ 8 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 9 ■
centerofexcellence autism
FINDING
THE ANSWERS one student at a time One in 88 children, including 1 in 54 boys, has an autism spectrum disorder. Those are startling numbers; they are climbing rapidly; and, remarkably, many experts regard them as conservative.
HE CHILDREN’S INSTITuTE OF PITTSBuRgH HAS RESPONDED to what many are calling “the autism epidemic” with a robust, comprehensive — and effective — focus that includes education, treatment and research. Together, those three program areas constitute the Center for Autism Center of Excellence.
EDUCATION Helping the kids most severely affected by autism to learn, communicate and behave in socially acceptable ways is a significant challenge — one that’s successfully being met in The Day School’s Sheila and Milton Fine Classrooms for Students with Autism. A specialized, controlled-stimulation area of The Day School contains the ten Classrooms for Students with Autism. Each classroom accommodates six students and three staff members, plus specialty-subject teachers, therapists, dietitians and in-house consultants. Each student has a highly individualized education plan with specific learning, communication and behavioral goals. To achieve the goals, the entire staff uses the techniques of Applied Behavioral Analysis (ABA), a systematic, highly structured method of delivering instruction and reinforcement, all with a behavioral focus. The staff also uses a method called the Verbal Behavior Initiative (VBI), focused on helping the kids develop and use language as a means toward increasing appropriate behaviors and interpersonal skills.
At the time, Dylan had severe behavioral issues, and was able to eat only baby food and graham crackers. Like many kids with autism, he had major difficulties with food textures. Cole was quieter, a child who wanted to be alone and endlessly play out scenes from a favorite movie. Neither boy was toilet-trained. Today, Beth says, “I couldn’t have made a better choice for my boys.” To begin with, both boys are now fully independent in their toileting. Dylan no longer needs one-on-one behavior support and, at lunch time, he’ll happily munch a ham sandwich. Through a carefully phased approach, the sensory problems with food have resolved. Cole has been able to move to a less intensive classroom setting, and the once completely withdrawn child now reads stories to his friends during circle time.
Opening Up the World As the students learn communication skills and self-control, the world opens up: behaviors improve; thoughts, emotions, wants and needs are understood and expressed; and real learning becomes possible. Dylan and Cole — twin brothers just turning 12 — are great examples. Their Mom, Beth, moved the family across the country three years ago after research convinced her that The Day School was the best place to help her sons.
■ 8 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 9 ■
centerofexcellence
autism There is, of course, no cure for autism, but there are multiple treatments. At the Service they include, for example: • Dietary and nutritional adjustments “We often find deficiencies in critical micronutrients, such as zinc, selenium, essential fatty acids and more,” says Dr. Faber. “Immune systems are often dysregulated and too ‘turned on,’ leading to central nervous system changes that can influence energy, affect and the ability to learn.” Shenoa Bernstein, the Service’s neurodevelopmental pediatric nurse practitioner, adds, “We often address not only digestive issues, but sensory problems and obsessive behaviors associated with eating.” The Service makes recommendations specific to each child and family, with care not to overwhelm emotions, schedules or finances.
Over 50 percent of students enrolled in The Day School over the last two years with no functional way to communicate are now able to communicate.
“It’s exactly what I’d hoped for — and couldn’t find anywhere else,” says Beth. “There is enormous expertise, and it’s applied systematically, consistently and many times every day by every single person who encounters each child. The staff knows every one of the kids in the School, they know what will be a motivator for each child and they know how to manage even the most challenging behaviors. “I can’t say enough good things about this program.” The success of The Day School’s autism program isn’t just anecdotal. Data is collected daily, and each student is comprehensively assessed twice yearly on academics, communication skills and behaviors. The results are impressive, particularly considering the severity of the kids’ autism. For example, more than 50 percent of students who enrolled in The Day School over the last two years with no functional way to communicate are now able to communicate. And a summary of the last five years shows that 80% of students who enrolled in The Day School with significant problem behaviors — including disruptive actions — have seen decreases in those behaviors. The Day School’s expertise with kids who have autism is widely acknowledged. Staff members are frequent presenters and panelists at national conferences, ■ 10 :: AM AZ IN G KIDS :: Winter 2013
and they are beginning to share their expertise through consulting. For example, The Day School has launched an initiative with an area school district to work with special education teachers on behavioral interventions.
TREATMENT The Hospital at The Children’s Institute provides comprehensive medical and therapy programs for children with autism. The Neurodevelopmental Service Each year, parents bring more than 1,000 kids with autism spectrum disorder to the Neurodevelopmental Service at The Children’s Institute. Families find help and hope at the Service, which also treats children with other neurodevelopmental conditions. The Service team invests considerable time with each young patient and family. An initial visit typically lasts nearly two hours, with subsequent visits that are also much more extensive than most medical appointments. “Our approach is comprehensive: we look at clinical, behavioral and biomedical factors as we make the diagnoses and determine the best treatment for each child,” says neurodevelopmental pediatrician Dr. Scott Faber.
• Medications are prescribed when behavioral issues indicate potential usefulness. • Behavioral health referrals to wraparound agencies and other programs are recommended if they might prove helpful for the child and family. • Biofeedback is offered to help some patients over age 6 deal with anxiety, attention difficulties and relaxation problems. Special computer programs make the sessions fun and productive. • Other supports The Service will refer to other specialties appropriate for the child and family, for example, physical, occupational and speech/language therapies, and socialization training programs. Shenoa Bernstein says, “We provide or recommend every support that a child and family need as we continue to work with them to create long-term solutions and relationships.” Outpatient Therapies Comprehensive evaluations and therapies for children on the autism spectrum are offered at each of The Children’s Institute’s four outpatient locations: Squirrel Hill, Bridgeville, Norwin Hills and Wexford. Occupational and physical therapists and speech/language pathologists provide a wide range
A Results-Driven Seminar:
Kids who have autism often have difficulties eating. Digestive issues and problems with different textures can lead to restrictive “white food” diets (i.e., spaghetti, rice, crackers and hamburger buns) that provide poor nutrition. The Children’s Institute’s Hospital and The Day School have achieved significant success in treating those issues and expanding kids’ diets in healthful ways. At the conference, key staff members will share information, experiences and practical tips with an audience that will include teachers, physicians, therapists and other professionals who work with children who have autism, as well as parents, students and any other interested people. The conference, with a modest registration fee, offers Act 48 credit for educators. Space is limited, so early registration is encouraged. To register, or for more information, contact Roxann Diez Gross, PhD at 412.420.2249 or rgr@the-institute.org.
Winter 2013 :: AMAZING KIDS :: 11 ■
centerofexcellence
autism There is, of course, no cure for autism, but there are multiple treatments. At the Service they include, for example: • Dietary and nutritional adjustments “We often find deficiencies in critical micronutrients, such as zinc, selenium, essential fatty acids and more,” says Dr. Faber. “Immune systems are often dysregulated and too ‘turned on,’ leading to central nervous system changes that can influence energy, affect and the ability to learn.” Shenoa Bernstein, the Service’s neurodevelopmental pediatric nurse practitioner, adds, “We often address not only digestive issues, but sensory problems and obsessive behaviors associated with eating.” The Service makes recommendations specific to each child and family, with care not to overwhelm emotions, schedules or finances.
Over 50 percent of students enrolled in The Day School over the last two years with no functional way to communicate are now able to communicate.
“It’s exactly what I’d hoped for — and couldn’t find anywhere else,” says Beth. “There is enormous expertise, and it’s applied systematically, consistently and many times every day by every single person who encounters each child. The staff knows every one of the kids in the School, they know what will be a motivator for each child and they know how to manage even the most challenging behaviors. “I can’t say enough good things about this program.” The success of The Day School’s autism program isn’t just anecdotal. Data is collected daily, and each student is comprehensively assessed twice yearly on academics, communication skills and behaviors. The results are impressive, particularly considering the severity of the kids’ autism. For example, more than 50 percent of students who enrolled in The Day School over the last two years with no functional way to communicate are now able to communicate. And a summary of the last five years shows that 80% of students who enrolled in The Day School with significant problem behaviors — including disruptive actions — have seen decreases in those behaviors. The Day School’s expertise with kids who have autism is widely acknowledged. Staff members are frequent presenters and panelists at national conferences, ■ 10 :: AM AZ IN G KIDS :: Winter 2013
and they are beginning to share their expertise through consulting. For example, The Day School has launched an initiative with an area school district to work with special education teachers on behavioral interventions.
TREATMENT The Hospital at The Children’s Institute provides comprehensive medical and therapy programs for children with autism. The Neurodevelopmental Service Each year, parents bring more than 1,000 kids with autism spectrum disorder to the Neurodevelopmental Service at The Children’s Institute. Families find help and hope at the Service, which also treats children with other neurodevelopmental conditions. The Service team invests considerable time with each young patient and family. An initial visit typically lasts nearly two hours, with subsequent visits that are also much more extensive than most medical appointments. “Our approach is comprehensive: we look at clinical, behavioral and biomedical factors as we make the diagnoses and determine the best treatment for each child,” says neurodevelopmental pediatrician Dr. Scott Faber.
• Medications are prescribed when behavioral issues indicate potential usefulness. • Behavioral health referrals to wraparound agencies and other programs are recommended if they might prove helpful for the child and family. • Biofeedback is offered to help some patients over age 6 deal with anxiety, attention difficulties and relaxation problems. Special computer programs make the sessions fun and productive. • Other supports The Service will refer to other specialties appropriate for the child and family, for example, physical, occupational and speech/language therapies, and socialization training programs. Shenoa Bernstein says, “We provide or recommend every support that a child and family need as we continue to work with them to create long-term solutions and relationships.” Outpatient Therapies Comprehensive evaluations and therapies for children on the autism spectrum are offered at each of The Children’s Institute’s four outpatient locations: Squirrel Hill, Bridgeville, Norwin Hills and Wexford. Occupational and physical therapists and speech/language pathologists provide a wide range
A Results-Driven Seminar:
Kids who have autism often have difficulties eating. Digestive issues and problems with different textures can lead to restrictive “white food” diets (i.e., spaghetti, rice, crackers and hamburger buns) that provide poor nutrition. The Children’s Institute’s Hospital and The Day School have achieved significant success in treating those issues and expanding kids’ diets in healthful ways. At the conference, key staff members will share information, experiences and practical tips with an audience that will include teachers, physicians, therapists and other professionals who work with children who have autism, as well as parents, students and any other interested people. The conference, with a modest registration fee, offers Act 48 credit for educators. Space is limited, so early registration is encouraged. To register, or for more information, contact Roxann Diez Gross, PhD at 412.420.2249 or rgr@the-institute.org.
Winter 2013 :: AMAZING KIDS :: 11 ■
centerofexcellence
centerofexcellence
autism
prader-willi syndrome
of services, including augmentative communication therapy and treatment for sensory processing, strength, coordination and feeding issues. Depending on the needs of the child, therapies can be offered in individual or group sessions. Lorelli Moser, OTR/L, Director of Occupational Therapy, says, “Childhood is the natural time for acquiring many skills, but kids on the autism spectrum have more roadblocks than others. The Children's Institute therapists can teach skills, provide strategies, recommend modifications to environments and ultimately help children be more active participants in their communities."
RESEARCH The mission of the Center for Autism includes not only education and treatment for today’s kids, but also discovery of answers to help tomorrow’s young patients. Research — historically an integral part of The Day School’s mission — continues energetically. Currently, for instance, a partnership with Carnegie Mellon university is investigating the effectiveness of using mobile devices to collect and share data to help teachers
effectively implement each child’s education plan. On the clinical side, several studies have been undertaken, and more are planned. In one study, researchers compared red blood cells from cohorts of children with and without autism, looking at markers of immune function, gastrointestinal inflammation, and levels of metal and chemical toxins. Among the results: the children with autism had immune systems that were far more active than those of their peers, making extra antibodies to proteins that can cause difficulties for gastrointestinal and central nervous function. They also had significantly higher anti-gluten Igg antibodies, indicating inflammation from wheat, barley, oats and rye. Those results, presented recently at an international conference, may be helpful in the prediction of autism, diagnosis and development of possible treatments. In another study, ten children with autism, accompanied by their parents, spent nighttimes in a special pollutant-free cleanroom. Indications are that the younger children did better behaviorally, and several improved the levels of types of proteins important for detoxification. Much of the Center’s research to date has been accomplished in partnership with Duquesne university, with Dr. Faber and Duquesne’s H.M. “Skip” Kingston, PhD, as co-principal investigators. Last year, the two organizations jointly hosted two well-received conferences at which renowned academicians and medical professionals discussed possible links between environmental issues and autism. More research is planned. For example, Dr. Faber says, “We plan to analyze the extensive database we’ve built over the years of clinical work, and that will help show the degree to which our varied approaches work to help the children improve.” ❖
MEETING A MAJOR LEAGUE CHALLENGE f William Weaver in May
2010
f F THE STORY SOuNDS FAMILIAR, you may have encountered it on the Discovery channel, because “My Deadly Appetite,” the story of William Weaver and his treatment in The Children’s Institute of Pittsburgh’s Center for Prader-Willi Syndrome, has aired multiple times to great acclaim.
William after treatment in May 2011
Autism Information for Adoptive and Foster Families
It’s 4 a.m. on a cold winter night when a strange sound wakes Faith and Will Weaver. Investigating, they find that their young son William has gone to his dad’s truck, found some tools and is using them to break the locks securing the family’s food supply.
The Children’s Institute Center for Prader-Willi Syndrome — a Center of Excellence — is the world’s only comprehensive inpatient treatment and rehabilitation program for this challenging condition.
The Children’s Institute’s Project STAR, with services that include adoption and foster care for kids with special needs, also has expertise with childhood autism. When training potential adoptive and foster families, Project STAR includes significant emphasis on parenting kids on the autism spectrum. If you think you might have room in your heart and your home for a child who has special needs, please contact Rob Henry for more information: 412.244.3048 or 724.544.8870, or roh@the-institute.org.
■ 12 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 13 ■
centerofexcellence
centerofexcellence
autism
prader-willi syndrome
of services, including augmentative communication therapy and treatment for sensory processing, strength, coordination and feeding issues. Depending on the needs of the child, therapies can be offered in individual or group sessions. Lorelli Moser, OTR/L, Director of Occupational Therapy, says, “Childhood is the natural time for acquiring many skills, but kids on the autism spectrum have more roadblocks than others. The Children's Institute therapists can teach skills, provide strategies, recommend modifications to environments and ultimately help children be more active participants in their communities."
RESEARCH The mission of the Center for Autism includes not only education and treatment for today’s kids, but also discovery of answers to help tomorrow’s young patients. Research — historically an integral part of The Day School’s mission — continues energetically. Currently, for instance, a partnership with Carnegie Mellon university is investigating the effectiveness of using mobile devices to collect and share data to help teachers
effectively implement each child’s education plan. On the clinical side, several studies have been undertaken, and more are planned. In one study, researchers compared red blood cells from cohorts of children with and without autism, looking at markers of immune function, gastrointestinal inflammation, and levels of metal and chemical toxins. Among the results: the children with autism had immune systems that were far more active than those of their peers, making extra antibodies to proteins that can cause difficulties for gastrointestinal and central nervous function. They also had significantly higher anti-gluten Igg antibodies, indicating inflammation from wheat, barley, oats and rye. Those results, presented recently at an international conference, may be helpful in the prediction of autism, diagnosis and development of possible treatments. In another study, ten children with autism, accompanied by their parents, spent nighttimes in a special pollutant-free cleanroom. Indications are that the younger children did better behaviorally, and several improved the levels of types of proteins important for detoxification. Much of the Center’s research to date has been accomplished in partnership with Duquesne university, with Dr. Faber and Duquesne’s H.M. “Skip” Kingston, PhD, as co-principal investigators. Last year, the two organizations jointly hosted two well-received conferences at which renowned academicians and medical professionals discussed possible links between environmental issues and autism. More research is planned. For example, Dr. Faber says, “We plan to analyze the extensive database we’ve built over the years of clinical work, and that will help show the degree to which our varied approaches work to help the children improve.” ❖
MEETING A MAJOR LEAGUE CHALLENGE f William Weaver in May
2010
f F THE STORY SOuNDS FAMILIAR, you may have encountered it on the Discovery channel, because “My Deadly Appetite,” the story of William Weaver and his treatment in The Children’s Institute of Pittsburgh’s Center for Prader-Willi Syndrome, has aired multiple times to great acclaim.
William after treatment in May 2011
Autism Information for Adoptive and Foster Families
It’s 4 a.m. on a cold winter night when a strange sound wakes Faith and Will Weaver. Investigating, they find that their young son William has gone to his dad’s truck, found some tools and is using them to break the locks securing the family’s food supply.
The Children’s Institute Center for Prader-Willi Syndrome — a Center of Excellence — is the world’s only comprehensive inpatient treatment and rehabilitation program for this challenging condition.
The Children’s Institute’s Project STAR, with services that include adoption and foster care for kids with special needs, also has expertise with childhood autism. When training potential adoptive and foster families, Project STAR includes significant emphasis on parenting kids on the autism spectrum. If you think you might have room in your heart and your home for a child who has special needs, please contact Rob Henry for more information: 412.244.3048 or 724.544.8870, or roh@the-institute.org.
■ 12 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 13 ■
centerofexcellence
“
prader-willi syndrome
I tell insurers all the time that there’s no place in the world like The Children’s Institute to get this
Rare — and Incurable Prader-Willi syndrome is rare, genetically caused and incurable. Its primary effect is insatiable hunger. Other effects can include developmental delay, short stature, low muscle tone, behavioral issues and obesity. People with severe cases never feel satiated, and unless food availability and intake are carefully limited, they can literally eat themselves to death, either ts Patien a through sudden stomach ge rupture or obesity-related avera se a e r medical complications. c in o What makes The i d in car ce Children’s Institute’s an program unique — and endur excellent — is its rigorous multidisciplinary approach that includes medical and nursing care; psychiatry and psychology; physical, occupational and speech/language therapies; diet and nutrition; and a carefully planned and monitored exercise regimen. Treatment is always completely tailored to the needs and abilities of each patient. The care takes place on a bright, sunny unit designed to meet the needs of both pediatric and adult patients. (This is The Children’s Institute’s only program that serves non-pediatric patients.) “For many patients, this is the first time they’ve been in a community of other people with Prader-Willi syndrome. It’s greatly helpful to know they’re not alone,” says Dr. Cynthia Smith, a pediatric physiatrist who is the attending physician on the unit. The unit has its own well-equipped gym, funded primarily through the Pittsburgh Pirates Wins for Kids program.
56%
■ 14 :: AM AZ IN G KIDS :: Winter 2013
So that patients don’t have to deal with the temptation of being surrounded by food, they are served meals brought to the unit’s dining area on trays individualized to each patient’s caloric and nutritional needs. A music therapist helps patients develop emotional expression and control, self-esteem and social skills. A speech/language pathologist holds regular “meet the author” sessions in which patients present, with great pride, essays and poetry they’ve written. Over each patient’s stay (an average admission is 67 days) weight comes off, health improves and, just as importantly, patients learn strategies for coping with their aggression and anger. Along the way, families and caregivers learn how to help manage patients’ difficult behaviors and stringent dietary needs. The program treats the most challenging patients in the world. Yet patient records from a typical year show impressive results: an average 56% increase in cardio endurance, an average weight loss of 36 pounds and increased compliance with behavioral management. Reduction or elimination of oxygen use was achieved in 87.5% of patients, and, among patients with diabetes, 40% were able to discontinue insulin use, transitioning to oral medications alone, or discontinuing diabetic medications altogether. “For so many of these patients, their stay here is the first time in their lives that they have been able to achieve success,” says staff psychiatrist Dr. greg Cherpes. Importantly, those good results persist. That was certainly the case with William Weaver, now down more than 100 pounds and doing well in his school for kids with special needs.
Avera weight ge loss
36 pou is nds
remarkable quality of care.
”
Jennifer Miller, MD
– William 00 1 minus S !! POUND
“He’s Not the Child We Brought to Pittsburgh” William’s family was in despair when they brought him to The Children’s Institute. Now, says Faith Weaver, “He’s amazing. He’s not the child we brought to Pittsburgh. He’s more cooperative, and for the first time we can plan things as a family. At The Children’s Institute, William himself and we as a family were given the tools we need to manage this difficult condition. We’re so grateful.” Program staff members are often asked to share their knowledge and expertise, for example by presenting, speaking and taking part in panels at professional meetings. Two staff members — Dr. greg Cherpes and Prader-Willi Syndrome Supports Coordinator Ken Smith — are on the Board of the national Prader-Willi Syndrome Association. Outpatient clinics at several hospitals across the country treat patients with Prader-Willi Syndrome, and The Children’s Institute is working on plans to offer professional development programming for the clinic professionals. The staff also participates in research to generate more knowledge about the condition. With the national association and partners at Duquesne university, they are investigating metabolic issues associated with the use of certain medications. Another study is comparing the impact of two different forms of exercise on patients’ Body Mass Index. And another will examine swallowing function in patients with Prader-Willi syndrome.
Staff members advocate strongly on behalf of patients with the syndrome, for example, for improved insurance coverage, for an increase in the availability of group homes specifically for people with PraderWilli syndrome, and for the availability of day programming and vocational programs. Meanwhile, the program has been praised as “exemplary” by the independent Commission on Accreditation of Rehabilitation Facilities (CARF), an international accrediting organization. Physicians who refer patients to the program are among its strongest supporters. jennifer Miller, MD, a pediatric endocrinologist in gainesville, Florida, follows 450 patients with Prader-Willi syndrome. When she sees a child who can’t improve even with excellent outpatient treatment, she refers that child to The Children’s Institute. She says, “The doctors and staff there are just phenomenal with these kids. I tell insurers all the time that there’s no place in the world like The Children’s Institute to get this remarkable quality of care.” Dr. Cherpes adds, “until there is a cure, refrigerators and pantries will need to stay locked. In creating the Center of Excellence, we are dedicated to unlocking human potential and clearing the barriers to healthy and fulfilling lives. Community support helps with program development and research to discover new keys to success.” ❖
Winter 2013 :: AMAZING KIDS :: 15 ■
centerofexcellence
“
prader-willi syndrome
I tell insurers all the time that there’s no place in the world like The Children’s Institute to get this
Rare — and Incurable Prader-Willi syndrome is rare, genetically caused and incurable. Its primary effect is insatiable hunger. Other effects can include developmental delay, short stature, low muscle tone, behavioral issues and obesity. People with severe cases never feel satiated, and unless food availability and intake are carefully limited, they can literally eat themselves to death, either ts Patien a through sudden stomach ge rupture or obesity-related avera se a e r medical complications. c in o What makes The i d in car ce Children’s Institute’s an program unique — and endur excellent — is its rigorous multidisciplinary approach that includes medical and nursing care; psychiatry and psychology; physical, occupational and speech/language therapies; diet and nutrition; and a carefully planned and monitored exercise regimen. Treatment is always completely tailored to the needs and abilities of each patient. The care takes place on a bright, sunny unit designed to meet the needs of both pediatric and adult patients. (This is The Children’s Institute’s only program that serves non-pediatric patients.) “For many patients, this is the first time they’ve been in a community of other people with Prader-Willi syndrome. It’s greatly helpful to know they’re not alone,” says Dr. Cynthia Smith, a pediatric physiatrist who is the attending physician on the unit. The unit has its own well-equipped gym, funded primarily through the Pittsburgh Pirates Wins for Kids program.
56%
■ 14 :: AM AZ IN G KIDS :: Winter 2013
So that patients don’t have to deal with the temptation of being surrounded by food, they are served meals brought to the unit’s dining area on trays individualized to each patient’s caloric and nutritional needs. A music therapist helps patients develop emotional expression and control, self-esteem and social skills. A speech/language pathologist holds regular “meet the author” sessions in which patients present, with great pride, essays and poetry they’ve written. Over each patient’s stay (an average admission is 67 days) weight comes off, health improves and, just as importantly, patients learn strategies for coping with their aggression and anger. Along the way, families and caregivers learn how to help manage patients’ difficult behaviors and stringent dietary needs. The program treats the most challenging patients in the world. Yet patient records from a typical year show impressive results: an average 56% increase in cardio endurance, an average weight loss of 36 pounds and increased compliance with behavioral management. Reduction or elimination of oxygen use was achieved in 87.5% of patients, and, among patients with diabetes, 40% were able to discontinue insulin use, transitioning to oral medications alone, or discontinuing diabetic medications altogether. “For so many of these patients, their stay here is the first time in their lives that they have been able to achieve success,” says staff psychiatrist Dr. greg Cherpes. Importantly, those good results persist. That was certainly the case with William Weaver, now down more than 100 pounds and doing well in his school for kids with special needs.
Avera weight ge loss
36 pou is nds
remarkable quality of care.
”
Jennifer Miller, MD
– William 00 1 minus S !! POUND
“He’s Not the Child We Brought to Pittsburgh” William’s family was in despair when they brought him to The Children’s Institute. Now, says Faith Weaver, “He’s amazing. He’s not the child we brought to Pittsburgh. He’s more cooperative, and for the first time we can plan things as a family. At The Children’s Institute, William himself and we as a family were given the tools we need to manage this difficult condition. We’re so grateful.” Program staff members are often asked to share their knowledge and expertise, for example by presenting, speaking and taking part in panels at professional meetings. Two staff members — Dr. greg Cherpes and Prader-Willi Syndrome Supports Coordinator Ken Smith — are on the Board of the national Prader-Willi Syndrome Association. Outpatient clinics at several hospitals across the country treat patients with Prader-Willi Syndrome, and The Children’s Institute is working on plans to offer professional development programming for the clinic professionals. The staff also participates in research to generate more knowledge about the condition. With the national association and partners at Duquesne university, they are investigating metabolic issues associated with the use of certain medications. Another study is comparing the impact of two different forms of exercise on patients’ Body Mass Index. And another will examine swallowing function in patients with Prader-Willi syndrome.
Staff members advocate strongly on behalf of patients with the syndrome, for example, for improved insurance coverage, for an increase in the availability of group homes specifically for people with PraderWilli syndrome, and for the availability of day programming and vocational programs. Meanwhile, the program has been praised as “exemplary” by the independent Commission on Accreditation of Rehabilitation Facilities (CARF), an international accrediting organization. Physicians who refer patients to the program are among its strongest supporters. jennifer Miller, MD, a pediatric endocrinologist in gainesville, Florida, follows 450 patients with Prader-Willi syndrome. When she sees a child who can’t improve even with excellent outpatient treatment, she refers that child to The Children’s Institute. She says, “The doctors and staff there are just phenomenal with these kids. I tell insurers all the time that there’s no place in the world like The Children’s Institute to get this remarkable quality of care.” Dr. Cherpes adds, “until there is a cure, refrigerators and pantries will need to stay locked. In creating the Center of Excellence, we are dedicated to unlocking human potential and clearing the barriers to healthy and fulfilling lives. Community support helps with program development and research to discover new keys to success.” ❖
Winter 2013 :: AMAZING KIDS :: 15 ■
centerofexcellence family visitation
Rebuilding
Families A mother and her toddler son, together in a comfortable kitchen, talk about the colors of the food she’s preparing for their dinner. She laughs when he triumphantly says the spaghetti sauce is “RED!” It’s a normal scene — but not an everyday situation, because this is a court-ordered supervised visit.
■ 16 :: AM AZ IN G KIDS :: Winter 2013
T
he mom — we’ll call her Sandra — is a single parent who works hard to support her three kids, all under age 7. Things were going well until the toddler suffered a significant brain injury at the hands of a trusted babysitter. He was hospitalized and then sent for rehabilitation treatment at The Children’s institute of Pittsburgh. With an investigation and legal action pending, the court removed the little boy from Sandra’s care and ordered a foster home placement. But, believing that reunification of the family might one day be safe and healthful for the child, the court also ordered a supervised visitation program under the guidance of The Children’s Institute’s Project STAR. Project STAR’s Center for Family Visitation, available in Allegheny, Beaver and Westmoreland Counties, is a Center of Excellence.
Over time, visits between Sandra and her son have progressed to a new level: they now take place with a Long recognized as a leader in supervised visitation caseworker nearby but not right in the room. “She’s a programs, Project STAR provides visits that are models good mom,” says Project STAR Caseworker Karen Hadix. of both professional diligence and personal warmth. “She’s constant in her visitations, and she’s doing all she Caseworkers discover what parents need in terms needs to do to get him back.” of knowledge, skills and practice, and the supervised The next step is visits in Sandra’s home visits are opportunities for coaching, role(in order to avoid triggering bad memories, modeling and hands-on lessons in child The Center provides she’s moved from the place where the child development, discipline and other aspects a warm and inviting was injured). After that, if things continue of parenting. Between sessions, caseworkers to go well, and if the court approves, the and parents discuss the previous visit and atmosphere, with fully family will be reunified. carefully prepare for the next. equipped kitchens For Sandra and her little boy, until last summer, Project STAR’s supervised family visitation has been a Allegheny County supervised visits — like as well as living and relatively brief process. For other families, those conducted by other local agencies — dining room areas in it’s far longer. Reunification doesn’t were held in a conference room. Bethany happen until caseworkers and the courts Leas, Project STAR’s Manager of Placement which families can believe that the children will be in safe Services, says, “The visits were productive, truly be “at home.” and nurturing environments. but it was sometimes difficult to predict how For families in Project STAR’s program, parents’ knowledge and skills would transfer that momentous event happens often. Last year, for to a home setting — for instance, when the kids have the example, families in the program achieved the outstanding TV too loud and something’s boiling over on the stove.” reunification rate of 90%. Project STAR knew that a more homelike setting Project STAR is dedicated not only to implementing could enable more productive visits, because the agency best practices, but also to developing them. One research has such a setting at its Beaver County offices. “It brought project in its early stages will quantify the degree to which the Family Visitation Program to a new level,” says Bethany, a homelike setting for supervised visits promotes family “and all of us were so happy when the dream of a new reunification more effectively than the typical office or Family Visitation Center became a reality for families conference room setting. Results will, of course, be shared we serve in Allegheny County.” with other social services agencies. ❖ The new Family Visitation Center, located on The Diligence — And Warmth
Children’s Institute’s Squirrel Hill campus, was formerly two homes with a common wall that was opened up during extensive refurbishment and repurposing. Today the Center provides a warm and inviting atmosphere, with fully equipped kitchens as well as living and dining room areas in which families can truly be “at home.” As soon as her son was released from inpatient care, Sandra’s supervised visits began in the old conference room setting, but were moved to the new Center as soon as it opened. “It’s made a big difference,” she says. “It’s the most natural thing in the world to fix a real meal for your child, or to relax together on a sofa.”
Generous funders to date of The Children’s Institute’s new Project STAR Family Visitation Center include Eden Hall Foundation, making the lead gift; Massey Charitable Trust; B.K. Simon Family Charitable Foundation; and, with in-kind support, Julianne Greece, Levin Furniture, Shady Lane School, Pietragallo Law Firm and PPG Industries.
Winter 2013 :: AMAZING KIDS :: 17 ■
centerofexcellence family visitation
Rebuilding
Families A mother and her toddler son, together in a comfortable kitchen, talk about the colors of the food she’s preparing for their dinner. She laughs when he triumphantly says the spaghetti sauce is “RED!” It’s a normal scene — but not an everyday situation, because this is a court-ordered supervised visit.
■ 16 :: AM AZ IN G KIDS :: Winter 2013
T
he mom — we’ll call her Sandra — is a single parent who works hard to support her three kids, all under age 7. Things were going well until the toddler suffered a significant brain injury at the hands of a trusted babysitter. He was hospitalized and then sent for rehabilitation treatment at The Children’s institute of Pittsburgh. With an investigation and legal action pending, the court removed the little boy from Sandra’s care and ordered a foster home placement. But, believing that reunification of the family might one day be safe and healthful for the child, the court also ordered a supervised visitation program under the guidance of The Children’s Institute’s Project STAR. Project STAR’s Center for Family Visitation, available in Allegheny, Beaver and Westmoreland Counties, is a Center of Excellence.
Over time, visits between Sandra and her son have progressed to a new level: they now take place with a Long recognized as a leader in supervised visitation caseworker nearby but not right in the room. “She’s a programs, Project STAR provides visits that are models good mom,” says Project STAR Caseworker Karen Hadix. of both professional diligence and personal warmth. “She’s constant in her visitations, and she’s doing all she Caseworkers discover what parents need in terms needs to do to get him back.” of knowledge, skills and practice, and the supervised The next step is visits in Sandra’s home visits are opportunities for coaching, role(in order to avoid triggering bad memories, modeling and hands-on lessons in child The Center provides she’s moved from the place where the child development, discipline and other aspects a warm and inviting was injured). After that, if things continue of parenting. Between sessions, caseworkers to go well, and if the court approves, the and parents discuss the previous visit and atmosphere, with fully family will be reunified. carefully prepare for the next. equipped kitchens For Sandra and her little boy, until last summer, Project STAR’s supervised family visitation has been a Allegheny County supervised visits — like as well as living and relatively brief process. For other families, those conducted by other local agencies — dining room areas in it’s far longer. Reunification doesn’t were held in a conference room. Bethany happen until caseworkers and the courts Leas, Project STAR’s Manager of Placement which families can believe that the children will be in safe Services, says, “The visits were productive, truly be “at home.” and nurturing environments. but it was sometimes difficult to predict how For families in Project STAR’s program, parents’ knowledge and skills would transfer that momentous event happens often. Last year, for to a home setting — for instance, when the kids have the example, families in the program achieved the outstanding TV too loud and something’s boiling over on the stove.” reunification rate of 90%. Project STAR knew that a more homelike setting Project STAR is dedicated not only to implementing could enable more productive visits, because the agency best practices, but also to developing them. One research has such a setting at its Beaver County offices. “It brought project in its early stages will quantify the degree to which the Family Visitation Program to a new level,” says Bethany, a homelike setting for supervised visits promotes family “and all of us were so happy when the dream of a new reunification more effectively than the typical office or Family Visitation Center became a reality for families conference room setting. Results will, of course, be shared we serve in Allegheny County.” with other social services agencies. ❖ The new Family Visitation Center, located on The Diligence — And Warmth
Children’s Institute’s Squirrel Hill campus, was formerly two homes with a common wall that was opened up during extensive refurbishment and repurposing. Today the Center provides a warm and inviting atmosphere, with fully equipped kitchens as well as living and dining room areas in which families can truly be “at home.” As soon as her son was released from inpatient care, Sandra’s supervised visits began in the old conference room setting, but were moved to the new Center as soon as it opened. “It’s made a big difference,” she says. “It’s the most natural thing in the world to fix a real meal for your child, or to relax together on a sofa.”
Generous funders to date of The Children’s Institute’s new Project STAR Family Visitation Center include Eden Hall Foundation, making the lead gift; Massey Charitable Trust; B.K. Simon Family Charitable Foundation; and, with in-kind support, Julianne Greece, Levin Furniture, Shady Lane School, Pietragallo Law Firm and PPG Industries.
Winter 2013 :: AMAZING KIDS :: 17 ■
centerofexcellence spinal cord injury
Recovering
mobility, strength and
hope Noah Sheriff adjusts his heavy backpack as he walks across the Penn State’s Greater Allegheny campus. He’s looking forward to the next class in his rehabilitation engineering major. Things were very different in January 2011. Noah was winning a championship high school wrestling match when a takedown went wrong — and the superb athlete ended up almost completely paralyzed with a spinal cord injury. After treatment in a local acute-care hospital, Noah was sent to The Children’s Institute of Pittsburgh.
EPENDINg ON THE DEgREE, location and type of injury, damage to the delicate spinal cord can produce anything from numbness and tingling to complete paralysis. Like Noah, most patients who come to The Children’s Institute have suffered serious injury with severe consequences. Most have been hurt accidentally — often in car crashes — while others have had infections that damaged the spinal cord. Most are teenage boys. They come to The Children’s Institute because of the reputation of the Center for Spinal Cord Injury Rehabilitation, another Center of Excellence. Here, the multidisciplinary approach and carefully coordinated schedule of intensive therapies help each patient regain the maximum possible function.
D ■ 18 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 19 ■
centerofexcellence spinal cord injury
Recovering
mobility, strength and
hope Noah Sheriff adjusts his heavy backpack as he walks across the Penn State’s Greater Allegheny campus. He’s looking forward to the next class in his rehabilitation engineering major. Things were very different in January 2011. Noah was winning a championship high school wrestling match when a takedown went wrong — and the superb athlete ended up almost completely paralyzed with a spinal cord injury. After treatment in a local acute-care hospital, Noah was sent to The Children’s Institute of Pittsburgh.
EPENDINg ON THE DEgREE, location and type of injury, damage to the delicate spinal cord can produce anything from numbness and tingling to complete paralysis. Like Noah, most patients who come to The Children’s Institute have suffered serious injury with severe consequences. Most have been hurt accidentally — often in car crashes — while others have had infections that damaged the spinal cord. Most are teenage boys. They come to The Children’s Institute because of the reputation of the Center for Spinal Cord Injury Rehabilitation, another Center of Excellence. Here, the multidisciplinary approach and carefully coordinated schedule of intensive therapies help each patient regain the maximum possible function.
D ■ 18 :: AM AZ IN G KIDS :: Winter 2013
Winter 2013 :: AMAZING KIDS :: 19 ■
centerofexcellence
spinal cord injury
Working with the treatment team, every patient can maximize his or her gains, and take recovery as far as possible.
Critical Role of Nursing Care Rehabilitation after a spinal cord injury poses special challenges. For the most part, patients are highly dependent on nursing care, not only for medications and tube feedings but also for bowel and bladder management and body positioning in order to avoid skin breakdown. Patients can’t feel skin breakdown happening, but it can be a gateway to infection, so frequent repositioning is crucial. And injuries at higher levels on the spine can produce a phenomenon called autonomic dysreflexia, a potentially life-threatening condition stemming from hyperactivity in the involuntary nervous system. “Our nurses are acutely aware of the medical challenges and potential dangers our patients with spinal cord injuries face,” says Chief Medical Officer Dr. Maryanne Henderson. “We’ve earned a reputation for early identification and prompt remediation of issues like dysreflexia. That’s one reason our patients do well.” Another key to the program’s success is the staff’s profound understanding of the emotional consequences of a spinal cord injury. Dr. Henderson says, “This is a difficult injury. Patients are usually cognitively intact, so they understand what they have lost, and they and their families are tense and frightened. The entire team, including the psychology department, works hard to help patients and families make the necessary adjustments to
■ 20 :: AM AZ IN G KIDS :: Winter 2013
their lives, while maintaining realistic hope of improvement through the hard work of therapy.” Depending on the patient’s needs, therapies can include physical, occupational and speech/language work. Often, state-of-the art equipment is put to use, for example, a special electronic stimulation bike that exercises the patient’s legs, preventing muscle atrophy and promoting blood circulation.
“I’m feeling stronger everyday.” Noah Sheriff
Five Hours of Daily Therapies — and “Homework” Requested Noah brought to all his therapies the same levels of energy and discipline he’d brought to his high school athletics and academics. He was also lucky; his spinal cord wasn’t severed, so he had the possibility of regaining function, and he fought hard to do that. His regimen included up to five intense and exhausting hours of therapy every day. Additionally, he requested “homework” he could do by himself in the evenings, with support from visiting family members and friends. His results are impressive. After four months as an inpatient, Noah left The Children’s Institute to return home. And a few months after that, he enrolled at Penn State. He still does outpatient therapies and is still making gains. There is some unevenness in his gait, and he hasn’t regained all his upper body strength or the mobility in his neck, where vertebrae were fused after his injury. “There will always be some effects of a severe injury like Noah’s,” says his outpatient physical therapist jack Hoerner, DPT. “But he’s made an excellent recovery, and there’s no telling how far he can take it.”
P Of course other patients, too, are disciplined and hardworking, but they may not recover as much function as Noah did. Progress depends in part on the type and extent of the injury. But, working with the treatment team, every patient can maximize his or her potential, and take recovery just as far as possible. As with Noah, the improvements made during the inpatient stay can continue indefinitely with outpatient therapies. Meanwhile, the staff is considering ways to broaden and deepen the effectiveness of the already highly regarded Center for Spinal Cord Injury Rehabilitiation. They are, for example, considering potential research projects that may provide practical value for tomorrow’s patients. One possibility is how to help patients stay motivated at skin breakdown prevention once
they return home. “It seems especially difficult for adolescent patients to stay disciplined about the constant repositioning that prevents skin breakdown,” Dr. Henderson says. “We’d like to develop some methods to keep them motivated for the long term, after they leave the inpatient setting.” Meanwhile, a special Wellness Program offers healthful weekly exercise to teens and young adults with spinal cord injuries or other neurological disabilities, whether or not they’ve been treated at The Children’s Institute. Each participant must be cleared medically and have his or her therapist design an exercise regimen. Exercise sessions at The Children’s Institute’s Squirrel Hill campus are then supervised by wellness coordinators knowledgeable about the precautions and adaptations necessary for safe exercise. For information or to apply, call 412.420.2131. ❖
“
He’s made an excellent recovery, and there’s no telling how far he can take it.
” Jack Horner, DPT
Winter 2013 :: AMAZING KIDS :: 21 ■
centerofexcellence
spinal cord injury
Working with the treatment team, every patient can maximize his or her gains, and take recovery as far as possible.
Critical Role of Nursing Care Rehabilitation after a spinal cord injury poses special challenges. For the most part, patients are highly dependent on nursing care, not only for medications and tube feedings but also for bowel and bladder management and body positioning in order to avoid skin breakdown. Patients can’t feel skin breakdown happening, but it can be a gateway to infection, so frequent repositioning is crucial. And injuries at higher levels on the spine can produce a phenomenon called autonomic dysreflexia, a potentially life-threatening condition stemming from hyperactivity in the involuntary nervous system. “Our nurses are acutely aware of the medical challenges and potential dangers our patients with spinal cord injuries face,” says Chief Medical Officer Dr. Maryanne Henderson. “We’ve earned a reputation for early identification and prompt remediation of issues like dysreflexia. That’s one reason our patients do well.” Another key to the program’s success is the staff’s profound understanding of the emotional consequences of a spinal cord injury. Dr. Henderson says, “This is a difficult injury. Patients are usually cognitively intact, so they understand what they have lost, and they and their families are tense and frightened. The entire team, including the psychology department, works hard to help patients and families make the necessary adjustments to
■ 20 :: AM AZ IN G KIDS :: Winter 2013
their lives, while maintaining realistic hope of improvement through the hard work of therapy.” Depending on the patient’s needs, therapies can include physical, occupational and speech/language work. Often, state-of-the art equipment is put to use, for example, a special electronic stimulation bike that exercises the patient’s legs, preventing muscle atrophy and promoting blood circulation.
“I’m feeling stronger everyday.” Noah Sheriff
Five Hours of Daily Therapies — and “Homework” Requested Noah brought to all his therapies the same levels of energy and discipline he’d brought to his high school athletics and academics. He was also lucky; his spinal cord wasn’t severed, so he had the possibility of regaining function, and he fought hard to do that. His regimen included up to five intense and exhausting hours of therapy every day. Additionally, he requested “homework” he could do by himself in the evenings, with support from visiting family members and friends. His results are impressive. After four months as an inpatient, Noah left The Children’s Institute to return home. And a few months after that, he enrolled at Penn State. He still does outpatient therapies and is still making gains. There is some unevenness in his gait, and he hasn’t regained all his upper body strength or the mobility in his neck, where vertebrae were fused after his injury. “There will always be some effects of a severe injury like Noah’s,” says his outpatient physical therapist jack Hoerner, DPT. “But he’s made an excellent recovery, and there’s no telling how far he can take it.”
P Of course other patients, too, are disciplined and hardworking, but they may not recover as much function as Noah did. Progress depends in part on the type and extent of the injury. But, working with the treatment team, every patient can maximize his or her potential, and take recovery just as far as possible. As with Noah, the improvements made during the inpatient stay can continue indefinitely with outpatient therapies. Meanwhile, the staff is considering ways to broaden and deepen the effectiveness of the already highly regarded Center for Spinal Cord Injury Rehabilitiation. They are, for example, considering potential research projects that may provide practical value for tomorrow’s patients. One possibility is how to help patients stay motivated at skin breakdown prevention once
they return home. “It seems especially difficult for adolescent patients to stay disciplined about the constant repositioning that prevents skin breakdown,” Dr. Henderson says. “We’d like to develop some methods to keep them motivated for the long term, after they leave the inpatient setting.” Meanwhile, a special Wellness Program offers healthful weekly exercise to teens and young adults with spinal cord injuries or other neurological disabilities, whether or not they’ve been treated at The Children’s Institute. Each participant must be cleared medically and have his or her therapist design an exercise regimen. Exercise sessions at The Children’s Institute’s Squirrel Hill campus are then supervised by wellness coordinators knowledgeable about the precautions and adaptations necessary for safe exercise. For information or to apply, call 412.420.2131. ❖
“
He’s made an excellent recovery, and there’s no telling how far he can take it.
” Jack Horner, DPT
Winter 2013 :: AMAZING KIDS :: 21 ■
newsbriefs
newsbriefs
EVENTS
AWARDS
Children’s Institute Donors Receive Philanthropy Awards
The Children’s Institute a Western Pennsylvania “Best Place to Work”
Generous supporters of The Children’s Institute of Pittsburgh were among locals honored at a National Philanthropy Day® celebration last month. The annual event, presented in Pittsburgh by the Western Pennsylvania Chapter of the Association of Fundraising Professionals, honors individuals and organizations who make a positive difference by contributing financial support, volunteering and mentoring tomorrow’s philanthropic leaders.
The Children’s Institute of Pittsburgh has been named one of the region’s “Best Places to Work” by the Pittsburgh Business Times. More than 150 organizations applied to participate, and The Children’s Institute, with nearly 400 full-time employees, placed sixth in the large-company category. The rankings were based on surveys completed privately online by each company’s employees.
Among those honored: Robert and Irene Bozzone, with the Special Lifetime Achievement Award. The Bozzones have long been major supporters of many Western Pennsylvania nonprofits, including The Children’s Institute. Mr. Bozzone was President, CEO and Chairman of Allegheny Technologies Inc., so the couple has strongly promoted STEM (Science, Technology, Engineering and Math) education, primarily through support of the Carnegie Science Center.
■ 22 :: AM AZ IN G KIDS :: Winter 2013
Ronald R. and Dr. Judith Davenport, with the Outstanding Philanthropists Award. The Davenports, founders of Sheridan Broadcasting Corporation, are known across the country for their business acumen and their support of worthy causes. Here in Western Pennsylvania, they have provided support to a range of organizations, including The Children’s Institute.
Robert H. Brown, Director of Human Resources, says, “Here at The Children’s institute, the atmosphere is warm and collegial, and the work culture is positive. That supports the efforts of our dedicated, expert staff in fulfilling our mission — and it’s part of what makes this a great place to work.”
The First Graders of Edgeworth and Osborne Elementary Schools, with the Outstanding Youth in Philanthropy Award. Each year, these Quaker Valley School District kids raise funds for The Children’s Institute by enthusiastically running “Laps for Love” and asking family members and friends to pledge support for each lap. “We congratulate Mr. and Mrs. Bozzone, Mr. and Dr. Davenport, and the Edgeworth-Osborne first graders on receiving the well-deserved philanthropy awards, and we are so pleased that they are among our generous donors,” says Helene Conway-Long, Vice President of Institutional Advancement at The Children’s Institute and 2012 National Philanthropy Day® event Co-Chair.
ricks and mortar. b f o e d a m t o n are nc e, cr ea tiv ity , Amazing places ing . Wi th int ell ige az am e ar le op people. Our pe s r each of our kid They’re made of day amazing fo ery ev g kin ma o int y put their all h one ergy and love, the titute of Pittsburg perseverance, en The Children’s Ins ke ma y the r, s. And togethe s and their familie with special need . rn Pennsylvania s to work in weste of the best place
Winter 2013 :: AMAZING KIDS :: 23 ■
newsbriefs
newsbriefs
EVENTS
AWARDS
Children’s Institute Donors Receive Philanthropy Awards
The Children’s Institute a Western Pennsylvania “Best Place to Work”
Generous supporters of The Children’s Institute of Pittsburgh were among locals honored at a National Philanthropy Day® celebration last month. The annual event, presented in Pittsburgh by the Western Pennsylvania Chapter of the Association of Fundraising Professionals, honors individuals and organizations who make a positive difference by contributing financial support, volunteering and mentoring tomorrow’s philanthropic leaders.
The Children’s Institute of Pittsburgh has been named one of the region’s “Best Places to Work” by the Pittsburgh Business Times. More than 150 organizations applied to participate, and The Children’s Institute, with nearly 400 full-time employees, placed sixth in the large-company category. The rankings were based on surveys completed privately online by each company’s employees.
Among those honored: Robert and Irene Bozzone, with the Special Lifetime Achievement Award. The Bozzones have long been major supporters of many Western Pennsylvania nonprofits, including The Children’s Institute. Mr. Bozzone was President, CEO and Chairman of Allegheny Technologies Inc., so the couple has strongly promoted STEM (Science, Technology, Engineering and Math) education, primarily through support of the Carnegie Science Center.
■ 22 :: AM AZ IN G KIDS :: Winter 2013
Ronald R. and Dr. Judith Davenport, with the Outstanding Philanthropists Award. The Davenports, founders of Sheridan Broadcasting Corporation, are known across the country for their business acumen and their support of worthy causes. Here in Western Pennsylvania, they have provided support to a range of organizations, including The Children’s Institute.
Robert H. Brown, Director of Human Resources, says, “Here at The Children’s institute, the atmosphere is warm and collegial, and the work culture is positive. That supports the efforts of our dedicated, expert staff in fulfilling our mission — and it’s part of what makes this a great place to work.”
The First Graders of Edgeworth and Osborne Elementary Schools, with the Outstanding Youth in Philanthropy Award. Each year, these Quaker Valley School District kids raise funds for The Children’s Institute by enthusiastically running “Laps for Love” and asking family members and friends to pledge support for each lap. “We congratulate Mr. and Mrs. Bozzone, Mr. and Dr. Davenport, and the Edgeworth-Osborne first graders on receiving the well-deserved philanthropy awards, and we are so pleased that they are among our generous donors,” says Helene Conway-Long, Vice President of Institutional Advancement at The Children’s Institute and 2012 National Philanthropy Day® event Co-Chair.
ricks and mortar. b f o e d a m t o n are nc e, cr ea tiv ity , Amazing places ing . Wi th int ell ige az am e ar le op people. Our pe s r each of our kid They’re made of day amazing fo ery ev g kin ma o int y put their all h one ergy and love, the titute of Pittsburg perseverance, en The Children’s Ins ke ma y the r, s. And togethe s and their familie with special need . rn Pennsylvania s to work in weste of the best place
Winter 2013 :: AMAZING KIDS :: 23 ■
donorprofile
boardofdirectors
Pittsburgh Pirates Bat .1000 for Kids and Families As The Pittsburgh Pirates prepare for Spring training for the 2013 season, they’re already hitting home runs for The Children’s Institute of Pittsburgh. The team’s philanthropic arm, Pirates Charities, focuses on youth health, fitness and education, and Pirates Charities have been strong supporters of The Children’s Institute’s work in those and other areas. One recent example: last summer, Pirates Charities partnered with ROOT SPORTS, the Pirates’ TV home, to host a live, on-air auction at PNC Park. During the live event, fans across the country bid on terrific items, and when the auction action was over, The Children’s Institute was presented with a $200,000 grant. Pirates manager Clint Hurdle posed for a picture with The support will be used for program enhancements student Rachel Meyers during The Day School's senior day field trip to PNC Park last May. within The Children’s Institute’s Centers of Excellence. A few examples: special equipment and furniture for the Prader-Willi Syndrome unit, specialized exercise equipment for kids with neurological issues, a “smart board” for patient/family training and iPads for kids with autism to use at The Children’s Institute’s satellite locations. But the Pirates’ generous support of The Children’s Institute doesn’t stop there. Manager Clint Hurdle, whose young daughter has Prader-Willi syndrome, started the Wins for Kids program, also in partnership with ROOT SPORTS. Fans pledge a certain dollar amount for every Pirates win, and the funds go to Pirates Charities and The Children’s Institute. Wins for Kids funded the new, professional-grade equipment for the gym on the Prader-Willi syndrome unit. There’s even more. The Pirates hosted The Day School’s entire senior class — plus each senior’s guest — for a VIP experience at a game last spring. The students couldn’t stop talking about the event, where they had box seats, an invitation down to the field and all the goodies they wanted to eat. David Miles, President and CEO of The Children’s Institute, says, “We are so grateful for the generous spirit of Pirates Charities and ROOT SPORTS. They’ve helped us better serve the kids and families who turn to us, and, importantly, they’ve introduced our organization and our work to thousands and thousands of sports fans.”
Front row, left to right: Michele M. McKenney, treasurer; Michael J. Hannon, chair; David K. Miles, president and chief executive officer; Maryanne J. Henderson, chief medical officer; Pamela W. Golden, vice chair; Back row, left to right: Susan Baker Shipley; Shawn Fox; Patricia Suzanne Chesko; Jonathan M. Kamin; Nita Wadhwani; J.A. Katarincic Jr.; Christina Cardoso; F. Brooks Robinson Jr.; Ellen P. Kessler; Allan MacDougall III; Holly Hatcher-Frazier. Absent from photo: J. Keefe Ellis Jr., vice chair; John K. Thornburgh, vice chair; Lisa C. Fagan, secretary; Gregory B. Benckart; John R. Denny; Carolyn D. Duronio; Joseph E. Imbriglia; James W. Marczak; Merrill P. Stabile.
The Children’s Institute Board of Directors 2012–2013 CHAIR
Michael J. Hannon VICE CHAIRS
J. Keefe Ellis Jr. Pamela W. Golden John K. Thornburgh SECRETARY
Gregory B. Benckart Christina Cardoso Patricia Suzanne Chesko John R. Denny Carolyn D. Duronio Shawn Fox Holly Hatcher-Frazier, EdD 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
Lisa C. Fagan ASSOCIATE MEMBERS TREASURER
Michele M. McKenney PRESIDENT AND CHIEF EXECUTIVE OFFICER
David K. Miles, MEd, MPM CHIEF MEDICAL OFFICER
Maryanne J. Henderson, DO
■ 24 :: AM AZ IN G KIDS :: Winter 2013
DIRECTORS
Nancy M. Armstrong Thomas J. Bachman Burnett G. Bartley Jr. 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 Gus P. Georgiadis Lillian H. Goldsmith George C. Greer Paul A. Heasley Joan M. Kaplan Marcia L. Keehn Pradeep K. Khosla, PhD Eileen L. Lane Ann M. McGuinn 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 Jamee W. Todd James W. Ummer Farley W. Whetzel Susan C. Williams Margot B. Woodwell
Winter 2013 :: AMAZING KIDS :: 25 ■
donorprofile
boardofdirectors
Pittsburgh Pirates Bat .1000 for Kids and Families As The Pittsburgh Pirates prepare for Spring training for the 2013 season, they’re already hitting home runs for The Children’s Institute of Pittsburgh. The team’s philanthropic arm, Pirates Charities, focuses on youth health, fitness and education, and Pirates Charities have been strong supporters of The Children’s Institute’s work in those and other areas. One recent example: last summer, Pirates Charities partnered with ROOT SPORTS, the Pirates’ TV home, to host a live, on-air auction at PNC Park. During the live event, fans across the country bid on terrific items, and when the auction action was over, The Children’s Institute was presented with a $200,000 grant. Pirates manager Clint Hurdle posed for a picture with The support will be used for program enhancements student Rachel Meyers during The Day School's senior day field trip to PNC Park last May. within The Children’s Institute’s Centers of Excellence. A few examples: special equipment and furniture for the Prader-Willi Syndrome unit, specialized exercise equipment for kids with neurological issues, a “smart board” for patient/family training and iPads for kids with autism to use at The Children’s Institute’s satellite locations. But the Pirates’ generous support of The Children’s Institute doesn’t stop there. Manager Clint Hurdle, whose young daughter has Prader-Willi syndrome, started the Wins for Kids program, also in partnership with ROOT SPORTS. Fans pledge a certain dollar amount for every Pirates win, and the funds go to Pirates Charities and The Children’s Institute. Wins for Kids funded the new, professional-grade equipment for the gym on the Prader-Willi syndrome unit. There’s even more. The Pirates hosted The Day School’s entire senior class — plus each senior’s guest — for a VIP experience at a game last spring. The students couldn’t stop talking about the event, where they had box seats, an invitation down to the field and all the goodies they wanted to eat. David Miles, President and CEO of The Children’s Institute, says, “We are so grateful for the generous spirit of Pirates Charities and ROOT SPORTS. They’ve helped us better serve the kids and families who turn to us, and, importantly, they’ve introduced our organization and our work to thousands and thousands of sports fans.”
Front row, left to right: Michele M. McKenney, treasurer; Michael J. Hannon, chair; David K. Miles, president and chief executive officer; Maryanne J. Henderson, chief medical officer; Pamela W. Golden, vice chair; Back row, left to right: Susan Baker Shipley; Shawn Fox; Patricia Suzanne Chesko; Jonathan M. Kamin; Nita Wadhwani; J.A. Katarincic Jr.; Christina Cardoso; F. Brooks Robinson Jr.; Ellen P. Kessler; Allan MacDougall III; Holly Hatcher-Frazier. Absent from photo: J. Keefe Ellis Jr., vice chair; John K. Thornburgh, vice chair; Lisa C. Fagan, secretary; Gregory B. Benckart; John R. Denny; Carolyn D. Duronio; Joseph E. Imbriglia; James W. Marczak; Merrill P. Stabile.
The Children’s Institute Board of Directors 2012–2013 CHAIR
Michael J. Hannon VICE CHAIRS
J. Keefe Ellis Jr. Pamela W. Golden John K. Thornburgh SECRETARY
Gregory B. Benckart Christina Cardoso Patricia Suzanne Chesko John R. Denny Carolyn D. Duronio Shawn Fox Holly Hatcher-Frazier, EdD 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
Lisa C. Fagan ASSOCIATE MEMBERS TREASURER
Michele M. McKenney PRESIDENT AND CHIEF EXECUTIVE OFFICER
David K. Miles, MEd, MPM CHIEF MEDICAL OFFICER
Maryanne J. Henderson, DO
■ 24 :: AM AZ IN G KIDS :: Winter 2013
DIRECTORS
Nancy M. Armstrong Thomas J. Bachman Burnett G. Bartley Jr. 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 Gus P. Georgiadis Lillian H. Goldsmith George C. Greer Paul A. Heasley Joan M. Kaplan Marcia L. Keehn Pradeep K. Khosla, PhD Eileen L. Lane Ann M. McGuinn 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 Jamee W. Todd James W. Ummer Farley W. Whetzel Susan C. Williams Margot B. Woodwell
Winter 2013 :: AMAZING KIDS :: 25 ■
communitycalendar JANUARY
2
FEBRUARY
9
16 23 30
1 Wed
9
Winter Break NO SCHOOL for students of The Day School Grand Rounds: Pediatric Rehabilitation The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m Speaker
Fri
8 Wed
13
10 Fri
11 Thur
Project STAR Adoption and Foster Care Information Meeting* The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Project STAR Family Support Group Potluck**
The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m. Speaker
Project STAR Adoption and Foster Care Information Meeting*
In-Service Day NO SCHOOL for students of The Day School
■ 26 :: AM AZ IN G KIDS :: Winter 2013
Wed
13
Mt. Olive Church 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Grand Rounds: Pediatric Rehabilitation The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m. Speaker
Project STAR Adoption and Foster Care Information Meeting*
Thur
Martin Luther King Jr. Day NO SCHOOL for students of The Day School
8
Project STAR Family Support Group Potluck**
Project STAR Adoption, Foster Care and Respite Care Information Meeting*
Project STAR Adoption and Foster Care Information Meeting*
21
Fri
Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30 p.m.
10 17 24
Students of The Day School dismissed at 1:30 p.m.
Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
18
Mon
28
Mon
Grand Rounds: Pediatric Rehabilitation
Mt. Olive Church 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30 p.m.
Mon
14
Mt. Olive Church 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Presidents’ Day NO SCHOOL for students of The Day School
17 21
Thur
Project STAR Family Support Group Potluck**
APRIL
6 13 20 27
Students of The Day School dismissed at 1:30 p.m.
Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
Thur
MARCH
6 13 20 27
Students of The Day School dismissed at 1:30 p.m.
Tue
WINTER 2013
Thur
14 Thur
The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Adoption and Foster Care Information Meeting*
21
Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30p.m.
Thur
In-Service Day NO SCHOOL for students of The Day School
28 Fri
29
Spring Break NO SCHOOL for students of The Day School
Students of The Day School dismissed at 1:30pm
Mon – Fri
1–5 Wed
10
Spring Break NO SCHOOL for students of The Day School Grand Rounds: Pediatric Rehabilitation The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m. Speaker Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
Thur
11 Fri
12 Thur
18
Project STAR Adoption and Foster Care Information Meeting* The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Project STAR Family Support Group Potluck** Mt. Olive Lutheran Church, 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Adoption and Foster Care Information Meeting* Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30 p.m.
* 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 roh@the-institute.org. **Training hours are available for Project STAR family support group meetings. Children’s activities will be provided. Please note that family support group meetings are cancelled if there are minimal RSVPs. To RSVP for a meeting, please contact Luisa Rylott at 724.775.0209 ext. 6030 or lpr@the-institute.org.
Winter 2013 :: AMAZING KIDS :: 27 ■
communitycalendar JANUARY
2
FEBRUARY
9
16 23 30
1 Wed
9
Winter Break NO SCHOOL for students of The Day School Grand Rounds: Pediatric Rehabilitation The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m Speaker
Fri
8 Wed
13
10 Fri
11 Thur
Project STAR Adoption and Foster Care Information Meeting* The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Project STAR Family Support Group Potluck**
The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m. Speaker
Project STAR Adoption and Foster Care Information Meeting*
In-Service Day NO SCHOOL for students of The Day School
■ 26 :: AM AZ IN G KIDS :: Winter 2013
Wed
13
Mt. Olive Church 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Grand Rounds: Pediatric Rehabilitation The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m. Speaker
Project STAR Adoption and Foster Care Information Meeting*
Thur
Martin Luther King Jr. Day NO SCHOOL for students of The Day School
8
Project STAR Family Support Group Potluck**
Project STAR Adoption, Foster Care and Respite Care Information Meeting*
Project STAR Adoption and Foster Care Information Meeting*
21
Fri
Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30 p.m.
10 17 24
Students of The Day School dismissed at 1:30 p.m.
Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
18
Mon
28
Mon
Grand Rounds: Pediatric Rehabilitation
Mt. Olive Church 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30 p.m.
Mon
14
Mt. Olive Church 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Presidents’ Day NO SCHOOL for students of The Day School
17 21
Thur
Project STAR Family Support Group Potluck**
APRIL
6 13 20 27
Students of The Day School dismissed at 1:30 p.m.
Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
Thur
MARCH
6 13 20 27
Students of The Day School dismissed at 1:30 p.m.
Tue
WINTER 2013
Thur
14 Thur
The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Adoption and Foster Care Information Meeting*
21
Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30p.m.
Thur
In-Service Day NO SCHOOL for students of The Day School
28 Fri
29
Spring Break NO SCHOOL for students of The Day School
Students of The Day School dismissed at 1:30pm
Mon – Fri
1–5 Wed
10
Spring Break NO SCHOOL for students of The Day School Grand Rounds: Pediatric Rehabilitation The Children’s Institute 1405 Shady Avenue, Pittsburgh 7:30–8:00 a.m. Registration/Refreshments 8:00–9:00 a.m. Speaker Continuing Medical Education (CME) available. No registration is required. For more information, please call 412.420.2270.
Thur
11 Fri
12 Thur
18
Project STAR Adoption and Foster Care Information Meeting* The Children’s Institute 1405 Shady Avenue, Pittsburgh 6:30–8:30 p.m.
Project STAR Family Support Group Potluck** Mt. Olive Lutheran Church, 2679 Darlington Road, Chippewa 6:30–8:30 p.m.
Adoption and Foster Care Information Meeting* Project STAR 1598 Virginia Avenue, Monaca 6:30–8:30 p.m.
* 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 roh@the-institute.org. **Training hours are available for Project STAR family support group meetings. Children’s activities will be provided. Please note that family support group meetings are cancelled if there are minimal RSVPs. To RSVP for a meeting, please contact Luisa Rylott at 724.775.0209 ext. 6030 or lpr@the-institute.org.
Winter 2013 :: AMAZING KIDS :: 27 ■
MISSION
The Children’s Institute is an independent, licensed nonprofit organization located in the Squirrel Hill
amazing
wishlist
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.
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 ranging from $100 to $5,000. Your donation will go toward the Wish List item of your choice, and as a donor, you will be listed in our annual report with the wish you fulfilled.*
The Children’s Institute was designed specifically as a rehabilitation facility, and its administration and staff are committed to increasing accessibility for
$140
call The Children’s Institute at 412.420.2485. 0
QTY
4
45
15
®
16GB iPad 2 with Wi-Fi
$5,000
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.
30
You can bring the library directly to our patients, families, clinicians, and staff – no matter where they are! This iPad will expand our library services, allowing
QTY iTunes
1 suite
all persons. If you have accessibility concerns, please
Time Timers®
remote access to checkin and checkout Help our kids stay on track during therapy
SERVICE
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. 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.
materials, educate patients and families, in The Hospital with Time Timers®. These review research and much more. large-display timers let our patients monitor how much time is left in their sessions,
Six 32GB iPad 2®s with Heavy Duty Protective Cases and iTunes® Gift Cards
motivating them to keep pushing hard until
from our archives
the time is up.
$550 For information about donating funds for the purchase of an item(s) from the Amazing Wish List, please contact Lauren Vermilion at 412.420.2204 or lve@the-institute.org.
QTY
Students of The Day School often have
1
special communication needs. But with the latest technology, they can share their thoughts in ways they never
Paula, like many others in the organization’s early days, was treated for polio at The Children’s Institute. In 1954, The Children’s Institute, then called “The Industrial Home for Crippled Children,” participated in final studies of the new polio vaccine developed by Pittsburgh’s Dr. Jonas Salk. In 1955, the vaccine was approved for widespread use.
thought possible. Your gift of six iPads iTunes
will be shared among the student population. Enclosed in protective cases for durability, these motivational learning tools will be used by staff to make learning and communicating less of an obstacle for our amazing students.
Magna Doodles Having fun is an important part of
$175
being a kid — even when you’re waiting for therapy. Give our kids the opportunity to create pictures and practice letters with these magnetic drawing boards while they wait for
*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.
■ 28 :: AM AZ IN G KIDS :: Winter 2013
outpatient appointments in The
QTY
5
Hospital.
Winter 2013 :: AMAZING KIDS :: 29 ■
MISSION
The Children’s Institute is an independent, licensed nonprofit organization located in the Squirrel Hill
amazing
wishlist
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.
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 ranging from $100 to $5,000. Your donation will go toward the Wish List item of your choice, and as a donor, you will be listed in our annual report with the wish you fulfilled.*
The Children’s Institute was designed specifically as a rehabilitation facility, and its administration and staff are committed to increasing accessibility for
$140
call The Children’s Institute at 412.420.2485. 0
QTY
4
45
15
®
16GB iPad 2 with Wi-Fi
$5,000
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.
30
You can bring the library directly to our patients, families, clinicians, and staff – no matter where they are! This iPad will expand our library services, allowing
QTY iTunes
1 suite
all persons. If you have accessibility concerns, please
Time Timers®
remote access to checkin and checkout Help our kids stay on track during therapy
SERVICE
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. 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.
materials, educate patients and families, in The Hospital with Time Timers®. These review research and much more. large-display timers let our patients monitor how much time is left in their sessions,
Six 32GB iPad 2®s with Heavy Duty Protective Cases and iTunes® Gift Cards
motivating them to keep pushing hard until
from our archives
the time is up.
$550 For information about donating funds for the purchase of an item(s) from the Amazing Wish List, please contact Lauren Vermilion at 412.420.2204 or lve@the-institute.org.
QTY
Students of The Day School often have
1
special communication needs. But with the latest technology, they can share their thoughts in ways they never
Paula, like many others in the organization’s early days, was treated for polio at The Children’s Institute. In 1954, The Children’s Institute, then called “The Industrial Home for Crippled Children,” participated in final studies of the new polio vaccine developed by Pittsburgh’s Dr. Jonas Salk. In 1955, the vaccine was approved for widespread use.
thought possible. Your gift of six iPads iTunes
will be shared among the student population. Enclosed in protective cases for durability, these motivational learning tools will be used by staff to make learning and communicating less of an obstacle for our amazing students.
Magna Doodles Having fun is an important part of
$175
being a kid — even when you’re waiting for therapy. Give our kids the opportunity to create pictures and practice letters with these magnetic drawing boards while they wait for
*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.
■ 28 :: AM AZ IN G KIDS :: Winter 2013
outpatient appointments in The
QTY
5
Hospital.
Winter 2013 :: AMAZING KIDS :: 29 ■
NON-PROFIT ORG. U.S. POSTAGE PAID PITTSBURGH, PA PERMIT NO. 748
1405 Shady Avenue Pittsburgh, Pennsylvania 15217-1350
amazingkids A publication of The Children’s Institute
Visit our website at www.amazingkids.org Follow us on Facebook at www.facebook.com/TheChildrensInstituteofPittsburgh Please recycle this publication when finished.
SPECIAL ISSUE
If you would like to be added or removed from our mailing list, please call 412.420.2203 or visit our website at www.amazingkids.org/contact. When you ask to be removed from our mailing list, The Children’s Institute will make a reasonable effort to ensure you are not contacted again. The Children’s Institute does not sell, trade or forward mailing lists.
THE CHILDREN’S INSTITUTE
centersofexcellence Restoring Childhood after Brain Injury
Thanks to you, there’s no stopping any of our kids or this amazing life-changing place. We know how busy life can get at this time of year, but, please remember to add one more small thing to your list that will have a great impact. Make a gift to The Children's Institute and continue to help the amazing kids and families who turn to us all year ’round. To make your gift, use the enclosed remittance
envelope, visit www.amazingkids.org/donate, or contact Deb Desjardins at ded@the-institute.org, 412.420.2216.
Thank you for making an amazing gift today!
Finding the Answers One Student at a Time Meeting a Major League Challenge Rebuilding Families Recovering Mobility, Strength and Hope
WINTER 2013