Cerebral Palsy

"Children and youth with cerebral palsy present pediatricians with complex diagnostic and therapeutic challenges. In most instances, care also requires communication and comanagement with pediatric subspecialists and pediatric surgical specialists, therapists, and community developmental and educational teams. The importance of family resilience to the patient's well-being broadens the ecologic scope of care, which highlights the value of a primary care medical home from which care is initiated, coordinated, and monitored and with which families can form a reliable alliance for information, support, and advocacy from the time of diagnosis through the transition to adulthood... A medical home should provide beyond the routine health maintenance, preventive care, and anticipatory guidance needed by all children."¹

Coordinated Care in a Medical Home

• A plan of care is developed by the physician, child or youth, and family and is shared with other providers, agencies, and organizations involved with the care of the patient.
• Care among multiple providers is coordinated through the medical home.
• A central record or database containing all pertinent medical information, including hospitalizations and specialty care, is maintained at the practice. The record is accessible, but confidentiality is preserved.
• The medical home physician shares information among the child or youth, family, and consultant and provides specific reason for referral to appropriate pediatric medical subspecialists, surgical specialists, and mental health/developmental professionals.
• Families are linked to family support groups, parent-to-parent groups, and other family resources.
• When a child or youth is referred for a consultation or additional care, the medical home physician assists the child, youth, and family in communicating clinical issues.
• The medical home physician evaluates and interprets the consultant’s recommendations for the child or youth and family and, in consultation with them and subspecialists, implements recommendations that are indicated and appropriate.
• The plan of care is coordinated with educational and other community organizations to ensure that special health needs of the individual child are addressed. ²

AAP Products and Reports
Neonatal Encephalopathy and Cerebral Palsy
Defining the Pathogenesis and Pathophysiology
Product Summary:This unique evidence-based, report provides a review of the current scientific knowledge and a better clinical understanding of the antecedents of neonatal encephalopathy and cerebral palsy. This information can lead to clinical interventions to reduce the incidence of those conditions and assist those who work in these areas and care for children with those disabilities.

- Softcover, 2003 - approx. 250 pages available through the AAP Bookstore

AAP Council on Children with Disabilities Reports
Providing a Primary Care Medical Home For Children and Youth with Cerebral Palsy
Published: PEDIATRICS, October 2004
Authors: W. Carl Cooley, MD and the Committee on Children with Disabilities

Web sites/Organizations
About Cerebral Palsy.Org
Do you have a child with cerebral palsy? Have you been searching for answers to your cerebral palsy questions? You can learn all about cerebral palsy and the latest treatments, read articles and news, or ask the doctor on www.about-cerebral-palsy.org/index.html

Cerebral Palsy FYI.Com: www.cerebralpalsyfyi.com
Cerebral Palsy FYI is another resource for information on Cerebral Palsy (CP). The Web site contains: Causes; Diagnosis; Types; Information for Parents; Problems Associated; Treatments; Information on Living with CP; FAQ's and a Glossary of CP terms.

American Academy for Cerebral Palsy and Developmental Medicine: www.aacpdm.org/
The American Academy for Cerebral Palsy and Developmental Medicine is a multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities.

United Cerebral Palsy Association: www.ucp.org/
The national organization and its nationwide network of 150 affiliates strive to ensure the inclusion of persons with disabilities. This site contains information for health professionals and families related to research, advocacy, and resources.

1. W. Carl Cooley, MD and the Committee on Children with Disabilities. Providing a Primary Care Medical Home For Children and Youth with Cerebral Palsy. PEDIATRICS, October 2004.

2. The medical home. Pediatrics. 2002; 110: 184-186

Last Updated August 8, 2008