Caring for a child with cerebral palsy can be a daunting task. Fortunately, there are a variety of resources available to help families and caregivers of children with cerebral palsy. From support groups to special equipment, this guide will provide an overview of the resources available to those living with cerebral palsy.
United Cerebral Palsy(UCP) is a leading organization that provides support services and education for people with a variety of disabilities, including cerebral palsy.
UCP's Parent Information and Resource Center (CPIR) is a great place to start for parents and caregivers looking for information and resources related to cerebral palsy. The Centers for Disease Control and Prevention (CDC) also provides information about cerebral palsy, including facts about the condition, diagnosis, and treatment options. The American Academy of Orthopedic Surgeons | OrthoInfo is another great resource for information about orthopedic treatments for cerebral palsy. In addition to information, there are a variety of special equipment and therapy options available to help children with cerebral palsy.
Braces, also known as ankle-foot orthoses (AFOs), can be used to keep the foot in place when a child is standing or walking. Custom splints can provide support to help a child use their hands. There are also a variety of therapy equipment and toys adapted to help children play and have fun while working their bodies. Activities such as swimming or horseback riding can help strengthen weaker muscles and relax tense muscles.
Support Groupsare an invaluable resource for families living with cerebral palsy.
Parents and caregivers can find encouragement and a sense of community through these organizations and support groups across the country. The Cerebral Palsy Research Network (CPRN) is a collaboration between hospitals and community members that works to improve the health outcomes of people with cerebral palsy through high-quality research, education, and community programming. The March of Dimes is another great resource for families living with cerebral palsy. Its mission is to improve the health and well-being of new mothers and babies, but its extensive support community offers a place to share stories through various online discussion forums.
It also has a wide network of parents who have experience raising children with special needs. March of Dimes can connect you with other parents who are in the same part of the country so you can find a local support network. Family Voices is another community support organization that promotes quality health care for children and young adults with disabilities. Its members work closely with government leaders and medical professionals nationally and locally to ensure that the voices of people with disabilities are heard.
The Cerebral Palsy Research Network's Community Web Portal was founded by CPRN and provides a forum for discussion among community members, doctors, and advocates about cerebral palsy research. All identities are protected, so people who are not members or search engines can access forum discussions. The information shared on the portal helps generate new knowledge for future research and better services for people with cerebral palsy. Families can also choose to complete confidential surveys about their experience with cerebral palsy, allowing the CPRN to find community members who want to participate in clinical trials or other studies.
Playgroupsare another great way for children with disabilities to come together in a safe environment and create a sense of camaraderie and friendship.
Playgroups meet year-round and are available in most major cities in the United States. Some local school communities may also have playgroups and meetings for disabled children.
Useful LinksHere are some useful links to agencies, organizations, and documents that address issues related to cerebral palsy for both consumers and professionals: United Cerebral Palsy (UCP), external icon; Cerebral Palsy Guide; Cerebral Palsy Research Network (external icon); Mommies of Miracles; American Academy of Pediatrics: Healthy Children (external icon). Facebook also has many private groups that bring families together to connect, give advice, and share stories about life with cerebral palsy. Caring for a child with cerebral palsy can be overwhelming at times, but there are many resources available to help families navigate this journey.
From support groups to special equipment, this guide provides an overview of the resources available to those living with cerebral palsy.