Children with Complex Chronic Conditions

Comprehensive Care for Children with Chronic Disabilities

The Rainbow Physician Extension Team provides compassionate and leading-edge care for children with chronic disabilities. This unique program at University Hospitals Rainbow Babies & Children’s Hospital provides children and families with a personalized care plan that is shared with the primary care provider (PCP), as well as updated assessments from a highly skilled multidisciplinary team of experts.

Children with complex chronic conditions (severe neurological impairment with multiple organ system disease) represent approximately 50 percent of total pediatric health care costs. Through this program, University Hospitals Rainbow Babies & Children’s Hospital provides these children with a unique heightened care coordination system.

Personalizing Health Care to Ease Stress

Managing health care for children with significant neurological and other disabilities can be stressful. These children participate in activities through school and the community but often face a host of health problems throughout their lives. Parents may struggle with managing their child’s care and seeing the many specialists required to meet their child’s complex needs.

UH Rainbow Babies & Children’s Hospital’s Physician Extension Team is designed to help children and young adults with severe medical disabilities navigate their health care. Our ultimate goal is to ease the stress on families and address the major health, educational and psychosocial needs of children in the outpatient setting and during hospital admissions.

Multidisciplinary Team Maximizes Quality of Life

Our highly skilled, multidisciplinary team provides a broad array of inpatient and outpatient services to help maximize a child’s function and quality of life. Members of the UH Rainbow Babies & Children’s Hospital’s Physician Extension Team include:

  • Pediatricians who specialize in neurodevelopmental disabilities
  • Nurse practitioners
  • Nurse coordinators
  • Dietitians
  • Social workers
  • Family care advocates

Inpatient Consultations and Outpatient Care

UH Rainbow Babies & Children’s Hospital offers expert inpatient and outpatient services for children and young adults In addition, families participating in UH Rainbow Physician Extension Team programs or utilizing a UH Rainbow Care Connection Network provider receive:

  • Medical, nutritional, and psychosocial consultations or care coordination issues (upon request by physician or family member)
  • 24/7 phone access to clinicians experienced in complex, chronic pediatric care
  • Sick visit appointments typically within 24 to 48 hours
  • Continuity of care to prevent fragmented care
  • Attention to the complete medical, developmental, social and quality of life needs of the child with a complex, chronic condition
  • Assistance with resource navigation within the hospital and community-at-large
  • Advocacy for patient and family service needs, goals and choices
  • Consultation during hospitalizations
  • Assistance and navigation through general medical care within specialty clinics

Our team is also available to consult as families make critical decisions regarding medical or surgical treatments and palliative care that focuses on the relief of pain, symptoms and stress of serious illness.

Family Care Advocates

The family care advocate is a new and unique role within UH Rainbow Physician Extension Team and developed as part of the program. These advocates not only work with families in the home but also accompany them to medical visits, identify barriers, provide support, and help to optimize adherence with prescribed regimens under real-life conditions.

Holistic Approach to Care

Our trained staff treats all patients with compassion and empathy and sees beyond patient disabilities. Resulting health issues and disabilities treated include:

  • Brain injuries
  • Cerebral palsy
  • Gastrointestinal issues
  • Gastroesophageal reflux disease
  • Growth and nutrition issues
  • Hearing and vision problems
  • Hip disorders
  • Metabolic and genetic disorders
  • Neurogenic bladder
  • Oral-motor dysfunction
  • Osteoporosis
  • Pneumonia
  • Scoliosis
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