Parents of children with cerebral palsy frequently search for resources, organizations and groups that can offer information or news, and that provide hope. Here’s a primer on the non-profit groups that many parents are likely to become familiar with during their child’s growing years.
Groups that aim to help
No matter what the medical condition, political issue or social cause of the day, there seems to be a non-profit or advocacy group that promises to help people affected by that particular issue, or willing to work to change the circumstances as they currently exist.
Cerebral palsy is no different. There are numerous groups at all levels of government and within various communities which exist to assist parents and children. They are operated by many well-intentioned people having a genuine concern for individuals living with cerebral palsy. But not all non-profit groups may offer the information, services or advocacy a parent may need at that moment. And not all groups, in general, are created equal.
There are some non-profits that are considered to be at the forefront in terms of working to improve the lives of people living with disabilities. In terms of cerebral palsy, there are organizations, both nationally and internationally, that advocate for civil rights, spearhead improvements in social policy, influence decision makers, engage in cutting-edge research, and seek to change the public mindset and make clear that a disability does not become an impediment to opportunity and inclusion.
We have identified five primary organizations that work on behalf of individuals with cerebral palsy. Here’s an overview of these organizations and the vital services they provide.
- International Cerebral Palsy Society
- Cerebral Palsy International Research Foundation
- Surveillance of Cerebral Palsy in Europe
- United Cerebral Palsy
International Cerebral Palsy Society
ICPS is an international organization that was founded in the United Kingdom in 1969. The organization was created to help increase acceptance of the estimated seventeen million individuals living with cerebral palsy, and to bridge the gap that exists in terms of their social acceptance, from country to country. Tragically, in some parts of the world, cerebral palsy is actually considered a punishment or curse brought upon a family or individual, and much work is still needed to foster better understanding and acceptance of cerebral palsy as an accepted medical condition.
Another goal of the ICPS is to develop services to assist children and adults living with cerebral palsy, enabling them to participate more thoroughly and participate in society.
The group actively promotes and seeks to protect the rights of people with disabilities. They encourage prevention and research in all areas affecting cerebral palsy. And, they promote cooperation, better understanding and information exchange worldwide.
ICPS employs an expert staff that works to disseminate information regarding new developments relating to cerebral palsy – new treatments, programs, changes in governmental policy, or advancing public understanding of the condition and how it affects individuals and their families. They encourage parents and professionals to freely exchange and share knowledge.
The organization’s main form of outreach is hosting seminars for individuals with cerebral palsy and their families. The goal of the seminars is to empower people with cerebral palsy to seek information and obtain answers about how they can better meet challenges, whether physical, emotional, financial, or educational. Generally, a host country will determine the scope of the seminar’s topics based on current issues and available solutions.
The society has 140 member organizations in 49 countries. Members are comprised of mostly national disability organizations, parent organizations, institutions, and professional organizations that provide service to the cerebral palsy community. The member organizations must register as a non-governmental organization (NGO) and their membership must be approved by the ICPS Executive Committee. Associate memberships include stakeholders such as rehabilitation and therapy centers that work closely with individuals with cerebral palsy.
The ICPS is headquartered in Great Britain.
ICPS member organizations in Europe created a coalition called the CP-ECA, which aims to influence policies regarding disability issues exclusively in Europe. The CP-ECA is an active member of the European Disability Forum (EDF), an independent NGO representing 80 million Europeans with disabilities.
Cerebral Palsy International Research Foundation
CPIRF is a non-profit organization based in Princeton Junction, New Jersey that focuses exclusively on funding research, advocating for Federal support and fostering educational initiatives on behalf of people with cerebral palsy. The initiatives funded by the organization seek to prevent the causes cerebral palsy, to discover potential cures for developmental disability, and to improve evidence based care within the medical community.
Founded in 1955, CPIRF has contributed more than $40 million to research efforts. Grant dollars provided by the foundation support more than 500 biomedical, clinical science and bioengineering projects throughout the world. The research supported by CPIRF grants are centered on early diagnosis, neurological rehabilitation and orthopedic rehabilitation, and preventative strategies to prevent secondary musculoskeletal complications often seen in people with cerebral palsy.
In addition to grant-making, the foundation shares discoveries on its website by compiling research fact sheets which are available to researchers as well as the general public.
The CPIRF also works to secure federal support for research, and to help create and sustain programs at medical schools that can educate future physicians and other professionals about treating patients with cerebral palsy. It is their hope that future generations affected by cerebral palsy will have more knowledgeable medical practitioners and therapists better prepared to provide needed care.
According to CPIRF, there are approximately one million children and adults living with cerebral palsy in the United States and an estimated 10,000 new cases of cerebral palsy reported each year, but public funding for cerebral palsy continues to remain disappointing. This creates other challenges that the CPIRF hopes to alleviate.
The CPIRF also contributes to international meetings in an attempt to identify new research opportunities. Public policy makers and medical professionals also seek the assistance of the CPIRF when setting policy or researching new treatments.
To learn more, visit Cerebral Palsy International Research Foundation.
Need more information on government assistance?
Request MyChild™ Kit No. 101
The Cerebral Palsy Starter Kit
Surveillance of Cerebral Palsy in Europe
Surveillance of Cerebral Palsy in Europe, or SCPE, is a collaboration of European cerebral palsy registers in Europe, as part of an effort to develop a central database of cerebral palsy cases that can be used to monitor trends and to plan service supports. SCPE studies the patterns, causes and effects of cerebral palsy in an effort to monitor trends and to raise the standards of care within the European healthcare community.
SCPE calls upon physicians, clinicians, epidemiologists and other stakeholders to apply universal classification to cerebral palsy cases which are added to the registry. It is the organization’s aim to apply these universal classification measures to reliably monitor cerebral palsy over time and compare it across regions. This will allow SCPE to identify risk factors, seek prevention measures, and to raise the quality of life standards for those living with cerebral palsy.
SCPE was founded in 1998 as a way to monitor best practices in care for people with cerebral palsy in a region where standards varied widely from country to country. The group strives to encourage consistency, which overall improves the standard of care that individuals living with cerebral palsy may receive.
In an effort to better identify the prevalence of cerebral palsy, SCPE was founded in 1998. Their efforts are funded, in large part, by the European Union. They advocate for unified classification and standardized definitions. Their membership is comprised of 14 centers in 8 countries. They network with SCPE partners in 16 other countries including France, the United Kingdom, Sweden, Germany, Italy and Norway.
SCPE publishes many of its findings online as a means to improve support of people with disabilities, and has published a comprehensive reference guide that includes all cerebral palsy-related terms and their meanings.
To learn more, visit Surveillance of Cerebral Palsy in Europe.
MyChild™ aims to be the ultimate resource for everything cerebral palsy within the United States. Their mission is to provide a comprehensive resource and compassionate voice for all things related to caring for a child with cerebral palsy, and other neurological conditions.
Founded in 1997, MyChild™ uniquely operates a national call center at its Novi, Mich. headquarters that parents and caregivers of children with special needs can turn to for needed, non-legal help, information, resources and inspiration. The call center fields inquiries on numerous topics that are of interest when caring for, or managing cerebral palsy. Topics of interest include care at home, in school, at work, or within the community.
MyChild™ shares its ever expanding network of resources on cerebral palsy, treatment and therapies, assistive technology, benefits and funding sources, support groups, community services and government programs, just to name a few. They offer resource kits to the public upon request on various areas of common concern to those within the cerebral palsy community.
MyChild™ assists parents by providing a comprehensive on-line website that not only offers straightforward information about cerebral palsy and its physical and emotional affects, but also provides inspiration, hope and words of wisdom from those living with cerebral palsy.
The MyChild™ Facebook page also offers parents of children with cerebral palsy, and adults living with the condition, a place to connect, share and to be inspired.
The MyChild™ Cerebral Palsy Foundation funds research to eliminate cerebral palsy and reduce its effects on children. The foundation is partially supported by Ken Stern, who is dedicated to helping create a forum in which families can quickly and easily tap into the information and resources they need, and their child deserves.
United Cerebral Palsy
One of the most active non-profits serving the cerebral palsy community in the United States is United Cerebral Palsy, or UCP. UCP is a network of state and local affiliates that advocates, educates and provides support for individuals with cerebral palsy, as well as a larger spectrum of disabilities. Despite their name, sixty-five percent of those served by UCP have disabilities other than cerebral palsy, including Down Syndrome, Autism Spectrum Disorder and traumatic brain injury (TBI).
Founded in 1949 in Washington DC, UCP was one of the first charities to build affiliate networks nationwide and internationally. Today, there are over 100 affiliates helping families find resources and programs within their local communities.
Each affiliate offers services which are intended to meet the needs of their region on a community-by-community basis, with in-house services, as well as referrals. Nearly all affiliates offer educational services, employment training and assistance, housing assistance, psychological assistance, family support networks, transportation assistance and recreational programs.
The goal of their program is to raise the standard of living and quality of life for people with disabilities so they can live active, fulfilling lives without limits. Advocating for better policies, laws, and resources regarding those with special needs is also part of UCP’s mission. In the 1950s and 1960s, UPC brought to the world’s attention the abhorrent living conditions in institutions intended to foster the health and welfare of people with disabilities.
In 1990, UCP played a significant role in the passage of the Americans with Disabilities Act, or ADA, which provided broad civil rights protections for individuals living with physical, cognitive or developmental disabilities.
Another issue of importance to UCP is to encourage voting – many people with disabilities have reported having difficulty registering to vote, or casting a vote, at the polls.
UCP also advocates for the availability of technology for persons with disabilities. The organization recognizes that technology has improved communications, or made it possible, while creating new opportunities for socialization and employment of people that may otherwise not have been able to enjoy either.
Today, UCP also works in Washington DC to encourage a sensible approach to many issues that affect people with disabilities, including housing and employment issues, health care reform, and education policy. The organization encourages the allocation of federal funds to better assist people with disabilities. Affiliates often compete for funds at the state level to endow programs that allow people with disabilities to live purposeful lives.
To learn more, visit United Cerebral Palsy
Need more information on government assistance?
Request MyChild™ Kit No. 101
The Cerebral Palsy Starter Kit
For additional sources of community support and funding: