Collaboration. Compassion. Comprehensive Care.

New Program Provides Expert Care for Children with Chronic Disabilities

Many children with significant cognitive and motor-related disabilities face a host of health problems throughout their lives. Often, parents may struggle with managing their child’s care and visiting the many specialists required to meet his or her complex needs.

University Hospitals Rainbow Babies & Children’s Hospital is introducing a new program – called the Center for Comprehensive Care – to help children, adolescents and young adults coping with severe disabilities and ease the stress on their families.

“We are creating a program in two phases to address the major health, educational and psychosocial needs of children with severe disabilities,” says Richard Grossberg, MD, FAAP, Director of the Center for Comprehensive Care. Dr. Grossberg also serves as Medical Director of the Hattie Larlham Center for Children with Disabilities, a 130-bed facility that provides residential services for children and young adults with developmental disabilities. “Our multidisciplinary team will provide a full continuum of inpatient and outpatient services to help maximize patients’ function and quality of life.”

Members of the care team include pediatricians who specialize in neurodevelopmental disabilities in children, adolescents and young adults; a nurse practitioner; nurses; a clinical administrator; a social worker; a dietitian and a medical assistant.

Complex Problems

Staff members at the Center for Comprehensive Care treat children with severe disabilities due to cerebral palsy, spina bifida, traumatic brain injury, shaken baby syndrome, metabolic and genetic disorders, and other conditions or injuries resulting in complex medical issues.

Most children with complex health issues require an advanced level of specialized care throughout their lives for a broad spectrum of medical problems. For example, they may have seizures, frequent bouts of pneumonia, gastroesophageal reflux disease, constipation, lack of bladder control, spasticity, oral-motor dysfunction, scoliosis, hip dislocation, hearing and visual problems, growth and nutrition issues, osteoporosis, fractures and other complications.

These children often take multiple medications. And some may require devices – such as ventilators, tracheostomies, gastrostomy tubes, central lines, baclofen pumps for spasticity and shunts for hydrocephalus – to help them breathe, get adequate nutrition and address other chronic medical needs.

“Many kids with severe disabilities deal with complicated medical issues on a daily basis,” Dr. Grossberg says. “Those issues become even more involved when they are sick or need inpatient care.”

Inpatient Consultation

As part of the first phase of the program, the center now offers inpatient consultations for children and young adults who are hospitalized with acute medical problems. Some of these children are frequently hospitalized because of complications related to their disabilities. Others may need help for disability related issues when they are hospitalized for other reasons.

“We provide comprehensive assessments and assist the doctors and nurses who are caring for patients’ acute needs,” Dr. Grossberg says. “Our team members are experienced in chronic care and can help ensure that kids’ acute and chronic needs are met, and prevent additional complications during their hospitalization.”

Outpatient Care

Phase two of the program – an outpatient clinic – will launch later this year. When the outpatient clinic opens, it will offer consultative medical care, counseling and education services in partnership with the patient’s pediatrician and many of the specialists at UH Rainbow Babies & Children’s Hospital.

“We want to help kids stay as healthy as possible,” Dr. Grossberg says. “To do that, we will be a resource for patients, families and pediatricians by providing family-centered services in a culturally effective way and helping them access the care they need.”

Holistic Approach

Staff at the Center for Comprehensive Care treat all patients with compassion and empathy and see beyond their disabilities.

“We evaluate the individual issues kids have and then develop treatment plans or consult with their providers,” Dr. Grossberg says. “Our focus is on caring and quality of life, not always on curing. We want to make life easier for patients and their family members and ensure each patient reaches his or her potential.”

In the future, staff at the Center will work to streamline the transition of care from pediatric to adult providers as the child reaches adulthood.

Consult the experts

To learn more about the Center for Comprehensive Care, call 216-286-6770

grossberg-richard Richard Grossberg, MD, FAAP
Director, Center for Comprehensive Care
UH Rainbow Babies & Children’s Hospital
Assistant Clinical Professor, Case Western Reserve University School of Medicine

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