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FINDING THE KEYS

Kennedy Krieger's Progress Report FY2014

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Page 1: Kennedy Krieger's Progress Report FY2014

FINDING THE KEYS

Page 2: Kennedy Krieger's Progress Report FY2014

With your support, Kennedy Krieger Institute brings together researchers, scientists, physicians, therapists, educators, and advocates to fi nd the keys our patients and students need to unlock their potential and succeed in family, school, and community life.

To learn more about the Institute’s patient care, research, professional training, special education, and community programs, visit KennedyKrieger.org.

Page 3: Kennedy Krieger's Progress Report FY2014

Our innovative research and professional training programs

are leading the effort to advance understanding, prevention, and

treatment of disorders and injuries of the brain, spinal cord, and

musculoskeletal system.

An interdisciplinary team of specialists works together to

evaluate, diagnose, and create individualized treatment plans to guide patients and families throughout all stages of care.

We offer school-based, hospital-based, and recreational

programs designed to unlock the potential inside our students, and

share our knowledge with educators everywhere through

training and consulting services.

We are committed to helping people with

developmental disabilities achieve their potential and enjoy

success in community life by providing access to resources,

services, and model programs.

RESEARCH & TRAININGRESEARCH & TRAINING

PATIENT CAREPATIENT CARE

SPECIAL EDUCATIONSPECIAL EDUCATION

COMMUNITY INITIATIVESCOMMUNITY INITIATIVES

Page 4: Kennedy Krieger's Progress Report FY2014

Dear Friend, With its intricate web of billions of neurons, the brain is the most complex organ in the human body. Especially complex is the brain of a young child, continuously evolving and forming hundreds of new connections every second. Each pathway is interwoven with another, creating a neural network that delivers signals throughout the nervous system, enabling a child to move, speak, and learn. When something goes awry, whether through a turn of genetics or a twist of fate, this delicate network can unravel, disrupting function or behavior and locking a child’s potential inside.

At Kennedy Krieger Institute, we are dedicated to fi nding the keys to unlock the potential of children with problems and injuries that affect the developing brain. Sometimes that means pinpointing a causal gene or biomarker, or reactivating neural pathways. Other times, it’s understanding how to reach children with uncontrollable behaviors so they can learn, or helping families to advocate for their children’s needs. We are always looking for the next breakthrough, and we are committed to sharing our knowledge to help children everywhere.

None of this would be possible without you. We are so appreciative of your commitment to helping us unlock the potential of the patients, students, and families we serve.

Sincerely,

Gary W. Goldstein, MDPresident and CEO

Dear Friend,

Page 5: Kennedy Krieger's Progress Report FY2014

When a seemingly routine illness turned into something much more serious for 3-year-old Logan, Kennedy Krieger was there.

Our awareness and understanding of developmental disorders and injuries have dramatically increased in recent years, and Kennedy Krieger has responded with a broad range of patient care programs that help more than 20,000 children and young adults each year. Programs are provided in a variety of settings, including inpatient, outpatient, home, and community.

Our comprehensive approach to patient care draws on science, medicine, therapy, and education to address the problems that affect a child’s development. We believe that early identifi cation and evidence-based interventions are key to maximizing potential and preventing major problems throughout a patient’s life.

For each patient, a team of specialists from multiple disciplines works with the family to create a tailored care plan aimed at unlocking the child’s potential.

Some of our recent patient care highlights and accomplishments include:

○ Created new programs to serve patients’ needs, including the Sickle Cell Neurodevelopmental Clinic, Pediatric Epilepsy and Neuropsychiatry Program, and Psychiatric Mental Health Program.

○ Formed a telemedicine partnership with Atlantic General Hospital that allows us to reach patients in rural areas on the Eastern Shore.

○ Expanded outpatient locations and services to better serve families living in Howard, Anne Arundel, Montgomery, and Prince George’s counties, and Washington, D.C.

○ Launched the Moser Center for Leukodystrophies to provide comprehensive care and research focused on preventing, treating, and curing leukodystrophies.

LOGAN’S STORY

LOGAN’S STORY

KennedyKrieger.org/PatientCare

Our awareness and understanding of developmental disorders and rders and injuries have dramatically increased in recent years, and Kennedy Krieger injuries have dramatically increased in recent years, and Kennedy Krieger has responded with a broad range of patient care programs that help more has responded with a broad range of patient care programs that help more

KennedyKrieger.org/PatientCare

PATIENT CAREPATIENT CARE

Some of our recent patient care highlights and accomplishments include:

○ ○

Page 6: Kennedy Krieger's Progress Report FY2014

� e therapists at Kennedy Krieger are amazing. � is was the most diffi cult nightmare any parent could imagine, and they made it OK. � ey give every parent hope.

“”– Logan’s Mom

Page 7: Kennedy Krieger's Progress Report FY2014

Logan loves dollhouses, fairies, and spending time with her mom and dad. She has a smile that can light up any room. But a year ago, she had little to smile about. Last spring, Logan developed a fever that wouldn’t break. The pediatrician thought it was an ear infection, but a course of antibiotics didn’t help. Two weeks later, Logan still didn’t want to get out of bed. When her mom, Brianna, tried to help her stand, Logan fell to the fl oor.

At the emergency room, she seemed to lose all function. Her arms were the fi rst to go limp, then her legs and the rest of her body. “From her neck down, she was a noodle,” recall her parents, Reggie and Brianna, who will never forget seeing their daughter so helpless, with tubes connected to her tiny body. Tests revealed she had transverse myelitis, a rare neurological disorder that can cause permanent paralysis. Logan needed intense inpatient rehabilitation and medical care, and her family found it at Kennedy Krieger’s International Center for Spinal Cord Injury. At fi rst Logan was scared and didn’t understand why she needed to stay in the hospital and undergo therapy. The therapists reassured and encouraged her, explaining that the harder she worked, the stronger she would become. They made therapy fun by demonstrating fi rst on her stuffed animal, and showing her pictures and videos for motivation.

Like all patients at Kennedy Krieger, Logan had a team of specialists working together to help her and her family. Logan’s team included an occupational therapist, a physical therapist, a physician, and a behavior therapist to help her cope. “The therapists at Kennedy Krieger are amazing,” says Brianna. “This was the most diffi cult nightmare any parent could imagine, and they made it OK. They give every parent hope.”

Logan underwent daily activity-based restorative therapy—exercises and activities such as functional electrical stimulation that focus on prompting cells to “remember” how to move while encouraging the growth of new nervous system cells. Slowly, Logan began to regain function and movement. She had to relearn everything, from how to move her arms and bend her legs to how to pull herself up to stand. Once she was stabilized, she went home but continued with outpatient therapy. On September 28, 2014, Logan began walking independently again. It’s a date that her mother says will be engraved in her brain forever. Soon after, Logan began running and hasn’t stopped since. Her ankles are weaker than they once were, but Logan has made a near complete recovery.

“We are so grateful,” says Brianna. “People come from all over the world for the medical care Logan received at Kennedy Krieger.”

Logan’s team of specialists used activity-based restorative therapies to help her regain function and movement, and a tailored treatment plan that motivated her to improve skills.

FINDING THE KEYS FOR LOGAN

Logan loves dollhouses, fairies, and spending time with her mom and dad. She has a smile that can light up any room. But a year ago, she had little to smile about. Last spring, Logan developed a fever that wouldn’t break. The pediatrician thought it was an ear infection, but a course of antibiotics didn’t help. Two weeks later, Logan still didn’t want to get out of bed. When her mom, Brianna, tried to help her stand, Logan fell to the fl oor.

PATIENT CAREPATIENT CARE

Page 8: Kennedy Krieger's Progress Report FY2014

Finding the keys to spinal cord injury recoveryThe International Center for Spinal Cord Injury at Kennedy Krieger Institute offers what families so desperately need: innovation, expertise, and hope. Hope for recovery of sensation, function, mobility, and independence. At our center this isn’t a dream; it’s a philosophy based in evidence.

The center offers an intense, medically supervised therapy program that emphasizes activity-based restorative therapies focused on recovery for children and adults—even those with chronic paralysis.

Perhaps what makes the center so unique, however, is its focus on helping patients reach personalized goals, the everyday accomplishments others may have told them were impossible. For some patients, this may mean adaptive skiing or competing in handcycle marathons. For others, it may mean riding a horse or walking across the stage at graduation. Whatever the goal, the team at Kennedy Krieger does everything possible to help our patients fi nd the keys they need to achieve their goals.

Finding the keys to Finding the keys to spinal cord injury recoveryThe International Center for Spinal Cord Injury at Kennedy

Finding the keys to

The International Center for Spinal Cord Injury at Kennedy Krieger Institute offers what families so desperately need: innovation, expertise, and hope. Hope for recovery of sensation, function, mobility, and independence. At our center this isn’t a dream; it’s a philosophy based in evidence.

The center offers an intense, medically supervised therapy

function, mobility, and independence. At our center this isn’t a dream; it’s a philosophy based in evidence.

The center offers an intense, medically supervised therapy program that emphasizes activity-based restorative therapies focused on recovery for children and adults—even those with chronic paralysis.

Perhaps what makes the center so unique, however, is

Cristina Sadowsky, MDDirector of the International Center for Spinal Cord Injury

“� e primary component of the team is the patient. She’s in the middle of a circle of specialists who are working to help that patient reach her potential.”

SpinalCordRecovery.org

Lizzie Neighbors, a physical therapist at the Institute, and Megan Silcott, a patient in our International Center for Spinal Cord Injury, are featured in a “Good Morning America” segment highlighting Megan’s journey to walk the runway during New York Fashion Week.

In the News

Read Megan’s story at KennedyKrieger.org/Megan

Page 9: Kennedy Krieger's Progress Report FY2014

At Kennedy Krieger Institute, we are dedicated to understanding and treating the problems and injuries that affect a child’s developing brain. Our scientists focus on dozens of key research areas, such as autism, brain injury, cerebral palsy, spinal cord injury, behavioral disorders, genetic muscle disorders, and intellectual disability.

With advances in imaging technology, genome sequencing, and bioinformatics, our knowledge continues to expand, leading to better diagnoses and more advanced interventions. In addition to sharing our knowledge through published research, every year Kennedy Krieger trains hundreds of professionals who go on to deliver life-changing care to children across the country and around the world.

Some of our recent research and training highlights and accomplishments include:

○ Research initiatives at the Institute have led to the passage of legislation to implement newborn screening for adrenoleukodystrophy (ALD) in seven states, enabling early diagnosis and life-saving therapies, and paving the way toward nationwide implementation.

○ Researchers developed a new xenograft model for successful regeneration of human skeletal muscle in mice, enabling accelerated research in facioscapulohumeral muscular dystrophy.

○ The nation’s largest online autism research effort, the Interactive Autism Network (IAN), reached more than 50,000 registered participants.

○ The RISE (Research Initiatives for Student Enhancement) programs expanded to include partners in California, Georgia, Ohio, and South Dakota, and continued to provide training for undergraduate, graduate, and professional students to increase the diversity of the public health workforce and reduce health disparities in underserved populations.

KennedyKrieger.org/Research-Training

Our researchers are at the forefront of understanding and treating brain injuries including concussions, placing patients like Morgan in the best of hands.

MORGAN’S STORY

KennedyKrieger.org/Research-Training

RESEARCH & TRAININGRESEARCH & TRAINING

Some of our recent research and training highlights and accomplishments include

○○ Research initiatives at the Institute have led to the passage of legislation to Research initiatives at the Institute have led to the passage of legislation to implement newborn screening for adrenoleukodystrophy (ALD) in seven states, enabling early diagnosis and life-saving therapiesnationwide implementation.

○ Researchers developed a of human skeletal muscle in micefacioscapulohumeral muscular dystrophy

○ The nation’s largest online autism research effort,(IAN), reached more than 50,000 registered participants

○ The RISE (Research Initiatives for Student Enhancement) programs expanded to include partners in California, Georgia, Ohio, and South Dakota, and continued to provide training for undergraduate, graduate, and professional students to increase the diversity of the public health workforce and reduce health disparities in underserved populations.

Page 10: Kennedy Krieger's Progress Report FY2014

Parents don’t realize—I never realized—how much time it takes to truly heal the brain. I learned so much from the doctors at Kennedy Krieger.“

”– Morgan’s Mom

Page 11: Kennedy Krieger's Progress Report FY2014

Morgan loves lacrosse and soccer, and is known for her high energy and athleticism. But a sledding accident threatened to change that.

During an afternoon playing in the snow, Morgan’s sled veered out of control and her head collided with her big sister’s. No one knew it at the time, but Morgan had sustained a concussion. Her mother, Lizzy, called her pediatrician’s offi ce, and the nurse practitioner advised watchful waiting. Later that day, Morgan began showing worrisome symptoms. She seemed lethargic and irritable—out of character for the active 7-year-old. “I saw her demeanor changing; her coloring had changed,” recalls Lizzy. “She was not her happy, bubbly self.”

Morgan’s mom knew something was wrong and called the pediatrician again, asking to be seen. The doctor took a look and sent them to the emergency room. A brain scan showed no swelling or bleeding of the brain, but revealed a broken orbital bone, for which she was referred to an eye specialist. They left the ER with a concussion diagnosis, but no clear care instructions other than to avoid sports until her symptoms stopped. Fortunately, Morgan’s mom recognized the seriousness of concussion. She turned to Kennedy Krieger for her daughter’s care. Morgan underwent a thorough evaluation by specialists which included medical, cognitive, and motor testing. Doctors explained that if Morgan resumed activities too soon, her brain would not have the chance to properly heal. This meant no running or jumping, no climbing, and no sports, which was devastating to Morgan, who had recently made the travel lacrosse team. Even sedentary activities like watching TV or reading could be too taxing and cause her symptoms to worsen. Doctors gave her a detailed concussion care plan to follow at home and school.

“It was very scary, very hard, because she is so active and just loves running,” says Lizzy. “But we knew that if she had a second concussion on top of the fi rst one, the damage could be lasting—it could be a forever injury.” Concussion care is complex; unlike with a broken arm in a cast, you can’t see into the brain to fi nd out its condition. And with a 7-year-old, it can be diffi cult to discern normal behavior from nuanced symptoms, like irritability. But Morgan was in good hands. Kennedy Krieger’s experts have been treating children with brain injuries for nearly 40 years, and its researchers are at the forefront of investigating the best ways to diagnose and treat concussions and prevent long-term effects on the brain.

Through a series of follow-up visits at the Institute, specialists continued evaluating Morgan’s progress and refi ning her recovery plan. She was gradually allowed to resume some activities, while being monitored for any increase in symptoms. Eight weeks after her injury, doctors determined that it was safe for Morgan to return to all normal activities, including lacrosse. Morgan was able to join her team for the last half of the lacrosse season. Her fi rst game back, she scored a goal. Morgan’s mom is grateful for her daughter’s progress and for the doctors who treated Morgan. “I learned so much from the doctors at Kennedy Krieger,” she says. “I left the ER without an education, whereas at Kennedy Krieger the doctors sat down and had a long talk with us about concussions. I left with a plan for what she was and was

not allowed to do that I could share with her school and with her coaches.”

� e care Morgan received at Kennedy Krieger was based on nearly 40 years of experience treating children with brain injuries, and its researchers are on

the forefront of investigating the best ways to diagnose and treat concussion and prevent long-term eff ects on the brain.

FINDING THE KEYS FOR MORGAN

Morgan loves lacrosse and soccer, and is known for her high energy and athleticism. But a sledding accident threatened to change that.

During an afternoon playing in the snow, Morgan’s sled veered out of control and her head collided with her big sister’s. No one knew it at the time, but Morgan had sustained a concussion. Her mother, Lizzy, called her pediatrician’s offi ce, and the nurse practitioner advised watchful waiting. Later that day, Morgan began showing worrisome symptoms.

RESEARCH & TRAININGRESEARCH & TRAINING

Page 12: Kennedy Krieger's Progress Report FY2014

Finding the keys to understanding brain injury and concussionKennedy Krieger Institute has a long and rich history of expertise in pediatric brain injury, both severe and mild, including concussions. While most concussion research elsewhere has focused on teens and adults, investigators at the Institute are casting a wider net to include young children.

Right now, there is no biomarker to indicate when a child has a concussion or when he or she is fully recovered, so decisions about returning to activities are based on behavior including cognitive and physical testing. In young children, though, it can be diffi cult to discern normal behavior from concussion symptoms. Dr. Stacy Suskauer and her colleagues at the Brain Injury Clinical Research Center are researching a potential biomarker for concussion through a study funded by the National Institutes of Health in partnership with the National Football League. One possible outcome is a small, portable device that could be used in schools and on sidelines to reliably evaluate for concussion and measure recovery.

Dr. Suskauer is also working with the Centers for Disease Control and Prevention to develop standard national guidelines for the clinical evaluation and care of youth with concussion. Through her research and thought leadership, she is working to establish much-needed evidence for clinicians and parents to recognize the signs of concussion and understand how to safely recover.clinicians and parents to recognize the signs of concussion and understand how to safely recover.

Finding the keys to understanding brain injury understanding brain injury and concussion

Finding the keys to understanding brain injury

Kennedy Krieger Institute has a long and rich history of expertise in pediatric brain injury, both severe and mild, including concussions. While most concussion research elsewhere has focused on teens and adults, investigators at the Institute are casting a wider net to include young children.

concussions. While most concussion research elsewhere has focused on teens and adults, investigators at the Institute are casting a wider net to include young children.

Right now, there is no biomarker to indicate when a child has a concussion or when he or she is fully recovered, so decisions about returning to activities are based on behavior including cognitive and physical testing. In young children, though, it can be diffi cult to discern normal behavior from concussion

“Right now, we don’t have a biomarker for when a child has recovered from concussion. What our research does is look atmore direct measurements of what’s happening in the brain.”

- Stacy Suskauer, MD, Director of Brain Injury Programs

KennedyKrieger.org/BrainInjuryResearch

In the News Dr. Suskauer’s leadership in the fi eld of brain injury was recently recognized when Huffi ngton Post’s PARENTS blog asked her to become a guest columnist with a piece about concussion occurrence in young children, discussing the causes of concussion and its signs and symptoms, and explaining the importance of early detection.

KennedyKrieger.org/Huff-Post-Concussion

Institutes of Health in partnership with the National Football League. One possible outcome is a small, portable device that could be used in schools and on sidelines to reliably evaluate for

guidelines for the clinical evaluation and care of youth with concussion. Through her research and thought leadership,

Page 13: Kennedy Krieger's Progress Report FY2014

When Noah was young, his teachers and those closest to him were overwhelmed by his diffi cult behaviors. It was hard to see his natural gifts.

Kennedy Krieger is an award-winning and nationally recognized leader in special education, providing innovative models of education for children with a wide range of learning, emotional, physical, neurological, and developmental disabilities.

Whether at our day schools, our partnerships with public school systems, or any of our other locations throughout the Baltimore-Washington region, we strive to provide the innovative and customized approaches that students with complex disabilities need for success.

Some of our recent special education highlights and accomplishments include:

○ Expanded special education to international students through the Student Exchange and Visitors Program. Student referrals are being made from Asia, the Middle East, and Europe.

○ Built a new, fully accessible, multipurpose sports fi eld for use by both the school programs and our adaptive sports program.

○ Expanded our special education consulting services to additional states, including Louisiana, Indiana, and Texas, to help teachers better serve children with special needs.

○ Implemented a virtual classroom training environment with student avatars to provide teachers with opportunities to practice specialized teaching skills.

NOAH’S STORY

KennedyKrieger.org/SpecialEducation

Kennedy Krieger is an award-winning and nationally recognized leader Kennedy Krieger is an award-winning and nationally recognized leader in special education, providing innovative models of education for children in special education, providing innovative models of education for children with a wide range of learning, emotional, physical, neurological, with a wide range of learning, emotional, physical, neurological,

KennedyKrieger.org/SpecialEducation

SPECIAL EDUCATIONSPECIAL EDUCATION

○ ○

Page 14: Kennedy Krieger's Progress Report FY2014

� e change in Noah has been remarkable. It’s like we got abrand new kid!“ ”– Noah’s Mom

Page 15: Kennedy Krieger's Progress Report FY2014

Noah is naturally funny and likes to make up his own jokes. He loves singing and music. He loves to help people, too. But when Noah was young, it was hard to see his natural gifts. His teachers and those closest to him were overwhelmed by his diffi cult behaviors.

When Noah was in fi fth grade, his behavior started becoming more and more diffi cult at home and at school. He was very aggressive. He was hitting. He was spitting, recalls Noah’s mom, Diana. “He wasn’t getting the support he needed…He just didn’t know how to cope.”

It’s a situation that happens all too often for children with autism. Diana was getting calls every day from the school asking what she was going to do about his behaviors.

“It was a very diffi cult time for us and for Noah too, because he knew he didn’t want to be like that,” says Diana. “But he was reacting the only way he knew how…it was a really tough time.”

Noah needed a school that specialized in the unique needs of students with autism. When the family visited Kennedy Krieger’s Montgomery County School, they instantly knew it was the right fi t.

Kennedy Krieger worked with the family to understand Noah’s needs and how best to motivate him. Noah’s team included a social worker, speech therapist, occupational therapist, behavior analyst, and teachers, all working together to provide the support he needed to learn. And they developed a strong relationship with Noah’s family to ensure consistency between home and school.

Now in high school, Noah is thriving. This past year was a special one for Noah. He won awards for most improved student and the president’s education award for outstanding academic achievement.

“He’s just come so far,” says Diana. “We could not have done it without Kennedy Krieger.”

Kennedy Krieger was able to off er Noah what so many other schools could not: an understanding of the brain-behavior relationship in children with autism, and how to translate this

knowledge into academic success.

FINDING THE KEYS FOR NOAH

Noah is naturally funny and likes to make up his own jokes. He loves singing and music. He loves to help people, too. But when Noah was young, it was hard to see his natural gifts. His teachers and those closest to him were overwhelmed by his diffi cult behaviors.

When Noah was in fi fth grade, his behavior started becoming more and more diffi cult at home and at school. He was very aggressive. He was hitting. He

SPECIAL EDUCATIONSPECIAL EDUCATION

Page 16: Kennedy Krieger's Progress Report FY2014

Finding the keys for students with autismOne in 68 children in the United States has autism spectrum disorder, and the numbers are growing. To meet the rapidly growing educational needs of children with autism, Kennedy Krieger’s School Autism Services draw on the Institute’s vast collective knowledge of brain development, behavior, and learning in children to help unlock the promise of students with autism.

Every child with autism has unique learning needs. That’s why a team of highly trained specialists works together with each family to create an individual education plan designed to help their child succeed in school. One student might need a structured system of motivation and rewards to prevent behavior from getting in the way of learning. Another might require time in the school’s state-of-the-art multi-sensory room, where swirls of color dance around the walls, rich scents fi ll the air, and chairs vibrate in time with soothing music.

Still others benefi t from visual learning tools and strategies, or autism-specifi c technology and apps. Each student has access to whatever therapies are needed to support participation in the educational program. Speech, behavior, art, music, physical, behavioral, and occupational therapy are all available and incorporated into the school day.

Putting together all these integral pieces is no easy task. Behind every student is an incredibly dedicated and creative team of educational professionals who are passionate about helping students fulfi ll their potential in school and beyond.

Putting together all these integral pieces is no easy task. Behind every student is an incredibly dedicated and creative team of educational professionals who are passionate about helping students fulfi ll their potential in school and beyond.

Finding the keys for Finding the keys for students with autismOne in 68 children in the United States has autism spectrum

Finding the keys for

One in 68 children in the United States has autism spectrum disorder, and the numbers are growing. To meet the rapidly growing educational needs of children with autism, Kennedy Krieger’s School Autism Services draw on the Institute’s vast collective knowledge of brain development, behavior, and learning in children to help unlock the promise of students with autism.

Krieger’s School Autism Services draw on the Institute’s vast collective knowledge of brain development, behavior, and learning in children to help unlock the promise of students with autism.

Every child with autism has unique learning needs. That’s why a team of highly trained specialists works together with each family to create an individual education plan designed to help their child succeed in school. One student might need a structured

“We help our students develop life skills through an active approach to learning, with participation in community and work-based learning opportunities.”

KennedyKrieger.org/AutismEducation

In the News

- Linda Brandenburg, EdD, Assistant Vice President for School Autism Services

The Washington Post describes how the siblings of two teenagers with autism came together to plan and execute the fi rst annual prom for students at the Montgomery County Kennedy Krieger Campus.

KennedyKrieger.org/AutismPromStory

Still others benefi t from visual learning tools and strategies,

participation in the educational program. Speech, behavior,

Behind every student is an incredibly dedicated and creative team of educational professionals who are passionate about helping students fulfi ll their potential in school and beyond.

Page 17: Kennedy Krieger's Progress Report FY2014

Kennedy Krieger’s reach extends far beyond our hospital and classroom doors to improve the lives of individuals with disabilities in the community. The Institute’s community initiatives include outreach, education, training, early intervention support services, adaptive sports, access to resources, and therapeutic foster care programs.

The cornerstone of our community efforts is the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute, which partners with community organizations and state agencies to provide vital resources and services for families throughout Maryland. Through a focus on professional training, community services, research, and information dissemination, the MCDD helps people with intellectual and developmental disabilities achieve independence, productivity, and inclusion within their communities.

Some of our recent community highlights and accomplishments include:

○ Conducted statewide trainings for more than 8,000 individuals, families, and professionals.

○ Celebrated the reappointment of a MCDD representative by President Obama to a key administration post advising on policies that affect individuals with intellectual disabilities.

○ Expanded Project HEAL (Health, Education, Advocacy, and Law) partnerships to include RE/MAX Preferred, Ballard Spahr LLP, and DLA Piper , one of the world’s largest law fi rms.

○ Continued statewide developmental disability community outreach and advocacy initiatives, providing advocacy and legal services and access to resources and support for families.

KennedyKrieger.org/Community

As David’s only caregiver, Sheryle worried about her grandson’s future as she watched him struggle to learn and fall further behind at school.

DAVID’S STORY

Kennedy Krieger’s reach extends far beyond our hospital and classroom Kennedy Krieger’s reach extends far beyond our hospital and classroom

KennedyKrieger.org/Community

COMMUNITY INITIATIVESCOMMUNITY INITIATIVES

Some of our recent community highlights and accomplishments include:Some of our recent community highlights and accomplishments include:

○ ○

○ ○

Page 18: Kennedy Krieger's Progress Report FY2014

”– David’s Grandmother””

Project HEAL empowered me to advocate for my grandson. He is now receiving the services he needs, and I know the right questions to ask when an attorney isn’t with me.

Page 19: Kennedy Krieger's Progress Report FY2014

.

From a young age, David showed anxiety and attention problems, and had frequent mood swings. In school, he struggled with learning and fell behind, so much so that in fi fth grade, he was reading at only a fi rst-grade level. David was frustrated and angry and frequently acted out. On bad days, he would shove books and papers to the fl oor and crouch under his desk or bolt from the classroom. To his adoptive grandmother, Sheryle, a retired teacher, it was obvious that David needed help. But her request for additional support for her grandson went unheeded at the school. Instead, they seemed to blame her for David’s learning problems and expected her to fi x his “inappropriate behavior.”

As David’s only caregiver, Sheryle worried about David’s future, especially as she approached the milestone age of 70. “I decided I had to do something,” recalls Sheryle. “I didn’t want to lose David. I didn’t want him to be the child you read about in the newspaper—a child who showed problems, but no one did anything.” Sheryle searched for help, and found Kennedy Krieger’s Project HEAL (Health, Education, Advocacy, and Law). The only medical-legal partnership in Maryland, the program offers help navigating the educational system for families of children with disabilities.

While David began outpatient treatment at Kennedy Krieger, Project HEAL attorney Karen McLaughlin consulted with David’s doctors and traveled to the family’s community on the Eastern Shore to help Sheryle advocate for David’s educational needs. Karen attended multiple meetings with the school and Sheryle to advocate for the services and supports David needed to be successful. Karen explained that David had a right to these services under federal and state laws.

With an attorney knowledgeable about both the educational system and David’s clinical needs by Sheryle’s side, the school began to respond. The school system hired an aide to work one-on-one with David each day and began making other changes, such as allowing him to enroll in extended school year services.

The changes have made a profound difference for David. “He knows he has limitations, but he doesn’t feel angry anymore,” says Sheryle. “He doesn’t have to hide under his desk, because he knows people are there to help him.” David’s mood improved, too. Now when Sheryle asks David about his day, he says, “I had a great day!”

“Project HEAL empowered me to advocate for my grandson,” says Sheryle. “He is now receiving the services he needs, and I know the right questions to ask when an attorney isn’t with me.”

Sheryle turned 70 in July. But now, the weight of worry about David’s future has lessened because of the impact that she and Project HEAL had on her grandson’s education and his future.

Project HEAL helped Sheryle navigate the complex educational system and become an advocate for her grandson,

ensuring that he receives the educational services he needs.

FINDING THE KEYS FOR DAVID.

From a young age, David showed anxiety and attention problems, and had frequent mood swings. In school, he struggled with learning and fell behind, so much so that in fi fth grade, he was reading at only a fi rst-grade level. David was frustrated and angry and frequently acted out. On bad days, he would shove books and papers to the fl oor and crouch under his desk or bolt from the

COMMUNITY INITIATIVESCOMMUNITY INITIATIVES

Page 20: Kennedy Krieger's Progress Report FY2014

Finding the keys through medical-legal partnershipNavigating the complexities of the educational system to ensure that a child’s educational needs are met is overwhelming for many families of children with intellectual and developmental disabilities. It requires knowledge of federal disability laws, special education, and medical conditions—a rare combination of expertise.

Maureen van Stone recognized the need for this expertise and created Kennedy Krieger’s Project HEAL, Maryland’s only comprehensive medical-legal partnership. A community-based program of the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute, Project HEAL provides comprehensive advocacy and legal services for children with intellectual and developmental disabilities and their families.

Project HEAL attorneys collaborate with Kennedy Krieger healthcare professionals and trainees to ensure that patients receive the medical and legal care they need, now and in the future. It’s one more way Kennedy Krieger is committed to serving children and families in the community.

Finding the keys through Finding the keys through medical-legal partnershipNavigating the complexities of the educational system to ensure

Finding the keys through

Navigating the complexities of the educational system to ensure that a child’s educational needs are met is overwhelming for many families of children with intellectual and developmental disabilities. It requires knowledge of federal disability laws, special education, and medical conditions—a rare combination of expertise.

disabilities. It requires knowledge of federal disability laws, special education, and medical conditions—a rare combination of expertise.

Maureen van Stone recognized the need for this expertise and created Kennedy Krieger’s Project HEAL, Maryland’s only comprehensive medical-legal partnership. A community-based program of the Maryland Center for Developmental Disabilities

“Project HEAL educates and empowers family members to advocate for their loved ones long after we close our case with them.”

–Maureen van Stone, Esq.Director of Project HEAL

“Project HEAL educates and empowers family members to advocate for their loved ones long after we close our case with them.”

KennedyKrieger.org/ProjectHEAL

In the News A feature story in The Baltimore

Sun highlights a family helped by

Project HEAL, while providing

the history and mission of

the program.

KennedyKrieger.org/ProjectHEALStory

Page 21: Kennedy Krieger's Progress Report FY2014