Cerebral Palsy and Spasticity Center | Patient Resources

The following is a list of Boston Children's resources related to cerebral palsy (CP) and its associated conditions.

A Guidebook for Baclofen Pump Therapy (PDF)
Created by the Cerebral Palsy and Spasticity Center at Boston Children's, this booklet discusses baclofen pump therapy, including the evaluation for getting a pump, the baclofen pump placement surgery, and the refill procedure.

A Guidebook for Hip Surgery in Children with Cerebral Palsy (PDF)
Created by clinicians in the Cerebral Palsy and Spasticity Center at Boston Children's, this booklet discusses various hip conditions a child with CP may encounter, as well as treatment options and postoperative immobilizations.

A Guidebook for Spinal Surgery in Children with Neuromuscular Disorders (PDF)
Created by clinicians in the Cerebral Palsy and Spasticity Center at Boston Children's, this booklet discusses various spine disorders a child with CP may encounter, as well as surgical treatment options.

A Guidebook for Hip Surveillance Screenings (PDF)
Created by clinicians in the Cerebral Palsy and Spasticity Center, this hip surveillance guide provides direction on gathering medical history, conducting a physical examination and using a comprehensive screening schedule for children with CP.

The Coping Clinic 
The Coping Clinic helps children with special health care needs and their families find ways to handle the extra stress associated with daily life. The staff provides evaluations, short-term therapy and family counseling. For more information please call 617-355-6688.

The Hale Family Center for Families
The Hale Family Center for Families helps parents become active members of their child's health care team. The Center provides information for families on questions they may have about diagnoses, community resources or hospital resources. For more information please call 617-355-6279, or email ctrfam@tch.harvard.edu.

Experience Journal
The Experience Journal is a collection of stories, pictures, and personal experiences from families about what it has been like to contend with pediatric CP. It represents the collective wisdom of families and health care providers. A group of parents and health care providers has reviewed all of these contributions for appropriateness.

The Family to Family Program
The Family to Family Program is located within the Hale Family Center for Families. It offers families support by connecting them with trained, experienced volunteer family members whose children have similar needs. For more information please call 617-355-6279.

The Family Advisory Committee 
The Family Advisory Committee is composed of parents and children who are treated regularly at the hospital, staff members and current and former patients. The purpose is to provide the patient and family perspectives needed for successful collaboration between families and health care providers. Projects include: a creation of a lecture series, creating a Family Faculty speakers bureau and publication of resource guides on specific conditions. If you are interested in joining the Family Advisory Committee please call the Hale Family Center for Families at 617-355-6279.

Genetics Program
The Clinical Genetics Program provides diagnostic evaluation for patients and families who have congenital abnormalities or developmental problems. Genetic counseling is also available for parents considering having another child. For more information please call 617-355-6394.

Guardianship: What happens when my child turns 18? (PDF)
Some young adults with CP benefit from ongoing assistance with medical decision making after they turn 18. Our social workers are experienced in assisting families in considering whether or not their child with CP might benefit from guardianship. They can help guide families through the process, identify resources, refer for further neuro-psychological testing and help oversee the documentation associated with obtaining guardianship.

Home Care Instructions (PDF)

Social Work Department
TThe Social Work Department is made up of a variety of professionals and programs dedicated to integrating the social and psychological needs of patients and families with their health care. For more information please visit their website, or call 617-355-7965.

AACPDM – The American Academy for Cerebral Palsy and Development Medicine
Boston Children's Hospital contributes papers, lectures and insights to the AACPDM and many staff are very active members of this national academy.

Boston Children's International Health Services is a dedicated resource for patients and families from countries outside the United States. International Health Services:

  • Facilitates the medical review of patient records
  • Assists with scheduling appointments
  • Provides assistance with customs and immigration
  • Helps coordinate transportation
  • Assists with arranging hotel lodging and other housing accommodations

You may contact International Health Services by phone at 1-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.