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Boston Children’s Hospital resources

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

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 center.families@childrens.harvard.edu.

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.

Social Work Department
The 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 webpage, or call 617-355-7965.

Complex Care Surgery Preparation Team
The Complex Care Surgery Preparation Team helps prepare children with cerebral palsy and other complex medical needs for surgery at Boston Children’s Hospital. The team will work with you and your child’s other providers to help optimize your child’s perioperative health and safety using a standardized checklist and pathway. For more information, please call 617-355-6162.

Guidebooks

A Guidebook for Baclofen Pump Therapy
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)
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)
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)
This hip surveillance guide provides direction on gathering medical history, conducting a physical examination and using a comprehensive screening schedule for children with CP.

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 can help guide families through the process, identify resources, refer for further neuropsychological testing, and help oversee the documentation associated with obtaining guardianship.

Home care instructions (PDF)

External resources

Neither Boston Children’s nor the Cerebral Palsy and Spasticity Center unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

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

Boston Center for Independent Living
This nonprofit organization is led by people with disabilities and committed to advocacy and ending discrimination.

Catastrophic Illness in Children Relief Fund
This fund provides financial assistance to families with children under the age of 22 with significant medical expenses.

Division for Children and Youth with Special Needs (1-800-882-1435)
This group supports children and youth with chronic medical conditions. Services range from care coordination and information about health insurance to safety planning and connecting with other families who have children with special needs.

Easter Seals Massachusetts
This organization helps families find services including early intervention, childcare, rehabilitation services, and community events.

Federation for Children with Special Needs
This organization provides school/educational advocacy to parents of individuals with disabilities.

Health Care for All (1-800-272-4232)
This nonprofit organization helps people navigate insurance coverage.

Massachusetts Department of Developmental Services
This state department provides public resources, online applications, and opportunities for individuals with physical and intellectual disabilities.

Massachusetts Rehabilitation Commission
This commission assists individuals with disabilities with vocational and housing services and other needs.

Rewarding Work
This group assists families with hiring personal care assistants.

Social Security
This site provides information on how to apply and receive benefits for people with disabilities.

Tempus Unlimited Inc.
The mission of this group is to provide community-based services to enhance the lives of children and adults with disabilities.

Toward Independent Living and Learning Inc.
This group connects people with disabilities to services and social opportunities that meet their needs and foster independence.

United Cerebral Palsy
This organization creates opportunities for individuals with cerebral palsy and other disabilities through programing, events, and information for families.