The Chronic Illness Management Program

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1 The Chronic Illness Management Program

2 No one ever expects to need us... then they can t imagine life without us. Welcome Children s Specialized Hospital is the preeminent provider of pediatric rehabilitation services and is the largest pediatric rehabilitation health system in the United States. Our hospital is dedicated to improving the lives of patients through delivering superior medical services, in a safe and caring environment. Children Specialized Hospital s core values are excellence, innovation, teamwork, compassion, integrity, and fun. Last year over 18,000 children came through the doors of our nine New Jersey sites. Through a blend of innovative therapies, personalized attention and compassionate support, our award-winning doctors and skilled pediatric therapists strive to make a difference for children and their families each and every day. Our Program When a teen struggles with a chronic illness the journey is often a challenging one. Our hospital specializes in providing a broad range of complex medical and rehabilitation care with a comprehensive approach that is unmatched. At Children s Specialized Hospital, our mission is to help every child reach his or her fullest potential. Our Chronic Illness Management Program is a comprehensive inpatient program for adolescents who have demonstrated an inability to manage their condition, placing them at great risk for life-threatening health complications. We aim to combat the cycle of children with unmanaged illnesses spending time in a hospital s intensive care unit to be stabilized, only to return because they had not been given the skills to properly care for their own condition. The program provides the patient and family with a customized plan to address the medical, nutritional, psychological, and family communication issues that can impact a child s health and wellness. The Chronic Illness Program is especially helpful for adolescents with conditions such as diabetes mellitus, HIV/AIDS, cancer, blood disorders, cystic fibrosis, asthma, or following an organ transplant. Our culture at Children s Specialized is unique. Your child and family will be welcomed, included, listened to, given options and personally assisted throughout their stay.

3 Our Specialized Care When a teen is admitted, our team of specialists completes a full evaluation and together, with the family and patient, develops a customized rehabilitation program and plan of care. Treatment is typically a four-week intensive program, designed to increase adherence and self-management. Our program includes medical monitoring and education, nutritional and fitness coaching, counseling, behavior management, occupational and recreational therapy, and child life services. We also arrange for regular one-on-one tutoring for patients in our classroom setting. During a patient s stay, our rehabilitation team meets regularly to monitor progress and revise the plan of care accordingly. We help each patient to set and attain realistic goals, receive education, build quality relationships with healthcare professionals, learn coping strategies, and develop family support. Most self-management issues and interventions apply across conditions; therefore, we have adolescents with varying diagnoses work together on adherence strategies. Family participation is a proven critical component of chronic illness management. Our Patient Outcomes With a mission to help every child reach his or her fullest potential, the Children s Specialized team is highly motivated by a strong record of positive patient outcomes and success. The Chronic Illness Program has seen tremendous success in its first year alone: 72% of teens in our program were able to stay hospital admission-free for a full year. Our Leadership Role With a growing reputation for innovative treatments and unique research programs, Children s Specialized Hospital is gaining momentum as a national and international leader for pioneering cutting-edge programs, sourcing the latest technology, and building upon partnerships with prestigious academic institutions. Our dedicated and talented staff is active in hundreds of medical and community organizations, from serving on the board of directors, to speaking at international medical symposiums. We are providing a voice for all children with special needs. We later guide the patient and family through their preparation for home, including training and meeting with school if necessary. Following discharge, we often continue to see and treat patients through Children s Specialized comprehensive outpatient services. Outpatient services can include psychological, nursing, nutrition and various therapies ranging from physical therapy to speech therapy. For social skills and enjoyment, our hospital offers a wonderful variety of leisure programs and peer support groups for patients, including a competitive athletic team and a social club. Throughout the continuum of care, Children s Specialized remains focused on the ultimate goal: a successful return to home, school, and community. Our Approach In our environment of patient-and-family centered care, we recognize the vital role that families play in ensuring the health and well-being of children. Our goal is to empower children and families to discover their own strength, build confidence ad make healthcare choices and decisions in partnership with our staff. The hospital offers support groups, workshops, and training programs to educate families and prepare them to help manage their child s unique needs. We employ a special team of parents and caregivers, our Family Faculty members, who can be leaned on for both answers and understanding.

4 Our Medical Team The Chronic Illness Management Program is under the direction of Dr. Michele Fantasia M.D. Board Certified in Pediatrics, Physical Medicine and Rehabilitation with a subspecialty certification in Spinal Cord Injury Medicine and Pediatric Physical Medicine and Rehabilitation. Dr. Fantasia is supported by a talented team of pediatric specialists, as well as consulting physicians. Janine DeFeo, MSN, CPNP, CRRN, and Certified Diabetes Educator, assists in all areas of clinical management. All medical programs are under the supervision of Frank V. Castello, M.D., Medical Director. Our Expert Rehabilitation Team Audiologist: The Audiologist provides comprehensive hearing testing services as needed. Dietician: The Dietician plans customized menus, giving special attention to medical needs, feeding skills, food preferences, and family traditions. Family: The family plays a pivotal role in both care and advocacy for their child. They learn all aspects of medical, nursing, therapy care for a safe discharge home. Nurses: Nurses coordinate and plan nursing, focus on special nursing and medical needs and provide family education. Patient Care Coordinator (PCC): The PCC advocates for patients and assists families. The PCC helps set goals; identifies home-discharge barriers, which may require alternative funding; coordinates with health insurers; and refers families to nursing/home care services, early intervention programs and therapy in the community. Pharmacist: The Pharmacist dispenses and monitors all medications prescribed for patients. Physical Therapist: The Physical Therapist works with the patient to improve endurance, strength, mobility, and alignment for daily activities and play. The Physical Therapist helps the patient tolerate handling and positioning in order to optimize development. Psychiatrist: The psychiatrist consults with doctors, therapists and families and evaluates whether medication is beneficial for patients with behavioral or emotional issues. Psychologist: The Psychologist assesses the family s levels of coping and provides ongoing support and guidance related to child development, parenting and other familyfocused issues. Occupational Therapist: The Occupational Therapist focuses on social and play skills to improve development skills, hand-eye coordination, sensory processing and self-care skills when appropriate. Recreational Therapist and Child Life Therapist: The Recreational Therapist establishes a foundation on which teens build play skills and promote social and emotional development. The Child Life Specialist provides comfort and procedural support to lessen anxiety from separation and hospitalization. Rehabilitation Technology: The Rehabilitation Technology staff provides patients with seating, positional equipment and adaptive equipment. Respiratory Therapist: The Respiratory Therapist monitors patients who are dependent on tracheotomies, oxygen, or ventilators. Treatment strives to maximize respiratory independence and facilitate home management for patients and their family members. Speech Pathologist: The Speech-Language Pathologist focuses on enhancing language and speech development, socialization skills.

5 PSE&G Children s Specialized Hospital Our Facility & Services Built in 2007, this sparkling, bright, four-story, 60-bed hospital can serve as a true home during a family s stay. Come in and you ll be greeted by a smiling face and grand entrance area. Visiting friends and family can enjoy our fantastic café. Families can spend time in our meditation chapel or access educational tools and computers in our resource library. Our impressive therapy area includes a large gym, semi-private treatment rooms, and a heated pool. An outdoor therapy garden and a playground complete the main floor, which conveniently connects to both the Bristol-Myers Squibb Children s Hospital at Robert Wood Johnson University Hospital and the Child Health institute of New Jersey. Our Rooms & Accommodations Our rooms are typically arranged in a semi-private setting. Each patient s bed area has its own flat-screen TV, game system, and family sleeping accommodations. Patient floors are divided by age and feature age appropriate amenities, such as game rooms, playrooms, and a teen lounge, as well as dining spaces, classrooms, therapy areas, and offices. Every floor is equipped with its own family lounge, kitchen and laundry room. Our Locations & Surroundings Conveniently located in New Brunswick, NJ, at the center of the state, PSE&G Children s Specialized Hospital is easily accessible from all major area roadways and a variety of public mass transportation, including Newark Airport, Amtrak, and bus/taxi services. New Brunswick also offers the combination of a downtown location with a variety of hotels, restaurants and shopping. A Ronald McDonald House is located across the street from our hospital for additional accommodations.

6 We surround every child and family with a team of expert staff. Our hospital is the single best place for complex pediatric rehabilitative care in the country. FRANK V. CASTELLO, M.D., MEDICAL DIRECTOR

7 Nuestro programa La lucha de un adolescente contra una enfermedad crónica es a menudo un gran desafío. Nuestro hospital se especializa en ofrecer una amplia gama de atención médica y rehabilitación compleja, con un enfoque integral sin par. La misión de Children s Specialized Hospital es ayudar a cada niño alcanzar su máximo potencial. Nuestro programa de manejo de enfermedades crónicas es un programa de hospitalización completa para los adolescentes que han demostrado no poder controlar su enfermedad, lo cual los pone en gran riesgo de complicaciones de salud que amenazan su vida. El Programa de Enfermedades Crónicas es especialmente útil para los adolescentes con enfermedades como la diabetes mellitus, el VIH / SIDA, cáncer, trastornos sanguíneos, fibrosis quística, asma, o después de un trasplante de órgano. La cultura de Children s Specialized es única. Su hijo y su familia serán recibidos, apreciados, y escuchados. Se le ofrecen opciones y una asistencia personalizada durante toda su estancia. Nuestra atención especializada Cuando un adolescente se ingresa, nuestro equipo de especialistas realiza una evaluación completa, y en conjunto con la familia y el paciente, desarrolla un programa de rehabilitación y un plan de cuidado personalizados. La fase de evaluación es seguida por un programa intensivo multidimensional de auto-gestión de cuatro semanas. El programa de Enfermedades Crónicas ofrece un tratamiento hospitalario estructurado con varios componentes diseñados para trabajar en conjunto. Proveemos instrucción individual para los pacientes en nuestro salón de clases. Después guiamos a la familia a preparar la vuelta al hogar, incluyendo su entrenamiento y, cuando fuera necesario, encuentros con la escuela del niño El hospital ofrece una gran variedad de programas de ocio para el disfrute de los pacientes, y grupos de apoyo para desarrollar el trato social. educación y la formación que necesitaban, y un sistema de apoyo de terapia, psicología y grupos de compañeros para ayudarlos una vez que volvieron a casa. Nuestro enfoque Dentro de un ambiente que centra la atención en el paciente y su familia, reconocemos el papel fundamental que desempeñan las familias en asegurar la salud y el bienestar de los niños. El hospital ofrece grupos de apoyo, talleres y programas de capacitación para educar a las familias, y prepararlas a gestionar las necesidades extraordinarias de sus hijos. Contamos con un equipo especial de padres y cuidadores - los miembros de nuestra Facultad de la Familia - que ofrecen comprensión y respuestas. Para mas información, pongase en contacto con: Jeannie Brooks, Directora de desarrollo de referencias en el (908) o por correo electrónico a 200 Somerset St., New Brunswick, NJ O visite nuestra página web: Nuestros resultados para los pacientes El equipo de Children s Specialized está muy motivado por un exitoso historial de resultados positivos para los pacientes. El Programa de Enfermedades Crónicas ha tenido un éxito tremendo en su primer año: 72% de los adolescentes en el programa fueron capaces de permanecer libre de ingresión al hospital durante todo un año. A estos adolescentes se les dió la

8 Admissions/Contact: The Chronic Illness Program is geared toward adolescents to young adults up to age 21 years. In order to qualify for our program, the following services are completed by our team: Contact with physician or insurance company who is referring the patient for clinical information and insurance approval. Medical clearance Cognitive testing Behavior screening We invite families to visit the hospital, get to know us, and learn more about our comprehensive Chronic Illness Program. For More Information, Please Contact: Jeannie Brooks, Director of Referral Development, at (908) , or by at: PSE&G Children s Specialized Hospital 200 Somerset Street New Brunswick, New Jersey For information on directions, parking, additional services, or how to volunteer, or donate, contact us at: CHILDREN ( ) Or, visit our website: Bayonne Clifton Fanwood Hamilton New Brunswick Mountainside Roselle Park Toms River

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