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Parents with a child with Cerebral Palsy, or adults with Cerebral Palsy, will often seek assistance and information from various government agencies. However, there are many national organizations that exist outside the state and federal government that are dedicated to helping individuals with Cerebral Palsy through support, programming and research.
What are non-government organizations?
Because state and federal governments typically have a long reach and offer several avenues that families can consider for assistance, it’s natural that the government would be a first step for parents once a child has been diagnosed with Cerebral Palsy.
Governments, however, are not the only entities that have large structures, unfettered resources and a desire to help those with disabilities. Organizations that are entirely separate from government funding or oversight have thrived in the United States and abroad. These nonprofit groups have achieved several milestones; they have pioneered research, changed perceptions, offered medical treatment, and assisted other community-based charities in meeting children’s needs.
They have done so by implementing massive fundraising mechanisms, engaging corporate partners, and soliciting individual donations on behalf of people with physical or intellectual disabilities.
These entities are called non-government organizations, or NGOs. Some of the organization names are instantly recognizable, others pursue their goals in a low-key fashion. Some of the organizations have a broad focus; others have a narrow mission. There are some NGOs that receive some government funds.
Non-government organizations provide support, programs and research
What all of these NGOs have in common is that they are seeking an improved state of affairs for individuals with disabilities. They are comprised of people who have worked tirelessly to improve the quality of life as well as open doors to awareness, opportunity, choice and inclusion.
We have identified six prominent NGOs that impact the lives of individuals with Cerebral Palsy, they include:
- Arc of the United States
- Academy of Cerebral Palsy and Developmental Medicine
- Easter Seals
- March of Dimes
- United Way
Arc of the United States
Founded 60 years ago by a group of parents of children with cognitive impairment that were frustrated by the lack of understanding about intellectual disabilities among members of the public, Arc of the United States’ mission is to foster independence, self-esteem and equality for people with disabilities. There are 140,000 Arc members in more than 700 state and local chapters nationwide.
When Arc was founded, there were few programs for children or adults with intellectually disabilities in the United States. The general wisdom of the time was that people with intellectual disabilities were better served through institutionalized care, which was a concept Arc members vigorously objected to.
A registered 501(c)(3) nonprofit, Arc has been a voice for change since its inception, and its members have fought for the passage of laws that aim to ensure that people with intellectual or developmental disabilities have a legal right to a meaningful education, professional and/or vocational opportunities, and inclusion in society. Arc achieves this mission through advocacy at a state and national level, as well as through public awareness campaigns.
Today, the landscape of how individuals with a developmental disability are treated has changed, but Arc’s mission remains steadfast. Through its network of state and local chapters, Arc members support measures that encourage equity in education settings and the workplace; community inclusion in all aspects of society; and self-determination at home and in public through resources and supports that make living independently possible and preferable.
Programs that help meet these goals are administered locally. Programs include early intervention for children to make sure resources are available early on, supported employment with local companies to provide individuals with economic independence, respite care for seniors and those with a disability, transportation services to those with a disability in need, and supports for siblings.
Additionally, some chapters offer case management services that include providing access to health services such as no- or low-cost dental; therapeutic services such as occupational, physical and speech therapy. Healthmeet® is one of Arc’s programs that provide health screenings, training for families, and referrals to medical professionals courtesy of a $1 million grant from the Centers of Disease Control and Prevention.
ARC has a comprehensive list of local and state chapters at its website. For more information about ARC, visit The Arc’s website.
To find a local chapter, visit The Arc’s local chapters.
The American Academy of Cerebral Palsy and Developmental Medicine
The American Academy of Cerebral Palsy and Developmental Medicine, or AACPDM, is a leading research organization that is focused improving treatments for children with Cerebral Palsy and other developmental disabilities.
The Academy is comprised of a multi-disciplinary team of physicians and researchers that are advancing not only scientific research on behalf of children with Cerebral Palsy, but also educating physicians, advocating for more research dollars, and investigating new adaptive technologies to help children move, learn, communicate, play, and participate in society.
Founded 60 years ago, the Academy was one of the first research facilities in the United States to focus exclusively on children with Cerebral Palsy. In the 1940s and 1950s, little emphasis was placed on research and rehabilitation of people with Cerebral Palsy.
In 1946, the Easter Seal Society began a campaign to improve medical care for people with Cerebral Palsy. A Cerebral Palsy advisory board comprised of six renowned physicians with varying specialties – Earl Carlson, MD in Internal Medicine; Bronson Crothers, MD in Neurology; George Deaver, MD in Rehabilitation Medicine; Temple Fay, MD in Neurosurgery; Meyer Perlstein, MD in Pediatrics; and Winthrop Phelps, MD in Orthopedics – was formed by the Easter Seal Society (then known as the National Society for Crippled Children and Adults). The council leaders, under the auspices of the American Academy for Cerebral Palsy, worked to advance the cause for improved medical treatment for individuals with Cerebral Palsy.
By the 1970s, the Academy boarded its scope to include research into other childhood disabilities. A decade later, the Academy expanded its focus beyond the United States and began research in other countries and continents, including Canada, Asia, Europe, and South America.
The Academy is not an organization that parents of children with Cerebral Palsy are likely to come into contact with directly. However, their children will likely benefit from the research that is being done at the Academy, and the care that is provided to their children by Academy-trained physicians.
The Academy is headquartered in Milwaukee, Wis. There is a wide-ranging list of research published by the Academy, and an overview of its mission at their website.
For more information on the American Academy for Cerebral Palsy and Developmental Medicine, visit AACPDM’s website
The American Academy for Cerebral Palsy and Developmental Medicine
555 East Wells, Suite 1100
Milwaukee, WI 53202
AACPDM – Website
AMBUCS, which stands for American Business Clubs, is a national non-profit that focuses exclusively on mobility matters to encourage the development of disability-friendly spaces and assistive technology that provide people with physical challenges a better quality of life.
Through a network of local affiliates, AMBUCS members take part in various forms of community service that help people with disabilities. The most recognizable of these outreach efforts is the AmTryke® program, which provides individuals that cannot operate traditional bicycles with an AmTryke® therapeutic tricycle. This tricycle is considered a safe and suitable alternative to a bike that is adapted for to accommodate a disability.
AMBUCS is also known to perform various forms of community service that help individuals become more mobile and independent. They build wheelchair ramps that make homes accessible and build community playgrounds that incorporate Universal Design standards.
Members of AMBUCS also understand how beneficial it is for people with disabilities to be social. Local chapters often host activities that encourage mobility. It gives people with disabilities the opportunity to meet and socialize with people that have disabilities as well as those that do not. The goal of the organized activities is to encourage connection and discourage isolation.
AMBUCS realizes the value of trained therapeutic professionals that help individuals with a physical disability to be mobile and independent. They have donated $7.6 million to educate physical therapists, occupational therapists, speech language pathologists and hearing audiologists that intend to work with individuals of all ages that have a disability.
Nationally, AMBUCS members help determine the course of the non-profit by participating in an annual convention, which takes place in a different city each year. Their programs are provided without funding from government or insurance.
AMBUCS was founded in 1922 in Birmingham, Ala. The organization still operates its headquarters in that city. There are currently 5,500 AMBUCS members, in 130 chapters, in 30 states within America.
To learn more about AMBUCS, visit AMBUCS’ website.
To locate a local chapter of AMBUCS, visit AMBUCS’ local chapters.
Easter Seals is a non-profit, international organization that serves more than one million children and adults with physical and developmental disabilities. They boast over 550 centers nationwide. Founded in 1919 as the National Society for Crippled Children, Easter Seals has an international presence and has expanded its focus to include adults and elderly individuals with disabilities. In 1934, the non-profit launched its first campaign that included the letter seals that are still common today.
Though Easter Seals is a well-known organization, its chapters are flexible enough in terms of service offerings to meet the individual needs of a community. Where there are more elderly persons than children, the services are likely to reflect those demographics. Today, Easter Seals provides services through 550 local chapters in the United States, and countless others abroad.
Easter Seals has several programs that help improve the lives of people with disabilities and their families. Generally, these initiatives include but are limited to physical rehabilitation, employment and job training, children’s services, adult and senior services and recreation opportunities.
Medical services and physical rehabilitation services are provided through an early intervention program that focuses on prevention, wellness and helping children meet developmental milestones to the best of their abilities. Physical, occupational, speech and hearing therapies are also provided. They also assist in helping families to secure assistive technology.
Employment and job training services are a priority of Easter Seals’ strategy because adults with disabilities are 12 time more likely to be unemployed than other adults. Therefore, workforce development is designed to be flexible enough to provide trainees with skills that are conducive to their abilities, yet specialized enough to be considered valuable by employers. Trainers work with trainees to identify their job skills and interests, and how assistive technology can enhance a trainee’s performance.
Children’s services include medical services and therapies, access to technologically-advanced assistance technology and support services for both children and families such as free developmental screening, child care services, intellectual disability programs, and educational programs.
Other services include elder day care and substance abuse services.
Seven key service areas
The Easter Seal’s 2011 Annual Report highlights the following seven key service areas:
- Medical Rehabilitation – 263 programs that offer PT, OT, SLP, audiology, rehabilitation, social work/case management, mental health and early intervention (182,770 individuals served in 2011).
- Child Care and Development – 192 programs that provide developmental monitoring, early child development services, inclusive child care, developmental pre-school programs and school-aged children’s services (52,962 children served in 2011).
- Assistive Technology – 64 assistive technology programs that offer assistive technology devices, including augmentative communication, hearing aids, orthotics/prosthetics and seating services (13,259 people served in 2011).
- Camping, Recreation, and Respite – 160 programs that include day and residential camps, recreation and sports opportunities, and respite services (29,854 children and adults in 2011).
- Adult and senior service programs – 157 programs that include adult day centers, community-based support programs, case management and in-home care (33,133 adults and seniors served in 2011).
- Workforce Development Programs – 167 programs that provide vocational services including, employee assessment, training, job placement, and development (77,464 adults served in 2011).
- Support Services – 129 programs that provided support groups, equipment loans, technology, financial aid assistance, transportation and health education (127,366 individuals served in 2011).
Easter Seals is also politically active. Because children and families rely on government assistance, staff members of non-profit organizations work with government officials to further legislation that prohibits discrimination and encourages full inclusion.
Easter Seals’ headquarters is located in Chicago, Illinois. For more information about Easter Seals services and programs, visit Easter Seals’ website.
To find a local Easter Seals chapter, visit Easter Seals’ local chapter listing.
March of Dimes
One of the most celebrated and venerable charities in the United States, the March of Dimes was conceived to combat the most virulent disease of the first part of the 20th Century – polio.
But after polio was largely eradicated in the years after a vaccine was discovered in the mid-1950s, the March of Dimes turned its attention to the reducing the incidents of birth defects worldwide through support of research, political activism, educational activities, and community outreach. The organization was one of a handful that involved children in their fundraising activities; they collected dimes and inserted them in a folder.
At the heart of the March of Dimes’ mission is prevention. To meet that end, the non-profit is engaged in identifying the environmental and genetic causes of birth defects, and assisting physicians and researchers in implementing best practices and healthful solutions for pregnant women and their babies before and during the birthing process.
The March of Dimes research indicates that in 70 percent of cases where a birth defect is present the causal factors are unknown. Preventative research is the main thrust of the March of Dimes. The organization uses its funding for grants to universities and hospitals that focus efforts toward preventing birth defects, or on projects dedicated towards identifying genetic abnormalities.
One of the March of Dimes’ missions is to end premature birth and low birth weight, which is known to be a causal factor in the occurrence of Cerebral Palsy. In the United States, the number of premature births increased by 36 percent during the past 25 years.
Another significant goal of the March of Dimes is to provide educational resources on healthful living, preconception, conception, and prenatal care. The organization also aims to educate women on the dangers of consuming alcohol during their pregnancy and the effects of Fetal Alcohol Syndrome. They also promote the benefits of consuming adequate amounts of folic acid during pregnancy.
In the event a child is born prematurely, has a birth defect, or acquires a birth injury the March of Dimes provides education services to medical professionals regarding how to provide information and support to parents with children in intensive care.
The March of Dimes headquarters is located in White Plains, New York. However, March of Dimes conducts drives in most communities in the United States. The organization’s website includes information and statistics about birth defects and premature birth at its Perinatal Data Center.
For more information on March of Dimes, visit March of Dimes’ website.
To find a local chapter, visit March of Dimes’ local chapters.
The United Way is a non-profit organization that has more than 1,000 local chapters that provide financial support, assistance and resources to community-based organizations that serve the local communities through charitable efforts. They also provide a resource hotline for individuals.
Based in Alexandria, Va., the United Way allows its affiliate organizations to pool fundraising efforts. The United Way fosters long-term and deep-rooted partnerships within local communities. Often times, monies are raised from corporate partners as a result of employee donations with an employer match that are then distributed to other organizations that serve people who are poor or ill. Other times, monies are provided to referral organizations or those that are committed to meeting a specific need – such as providing health services or nutritional assistance.
Specifically, the United Way has resolved to focus on the following issues for the 1.9 million families they serve by 2018: Educational opportunity, financial stability, and health and wellness.
The first United Way fundraising drive took place in 1887 in Denver, Colo. That effort raised $21,700 for 22 local charities; the organizers of the events and the charities that received the monies recognized the possibilities of pooling efforts and resources to raise funds. By 1948, the United Way conducted fundraising campaigns in 1,000 communities across the United States. In 1982, that number more than doubled to 2,200 communities nationwide.
In 2000, the United Way introduced the 211 Hotline, which provides referrals to various local and national health and human services that directly impact families in need of services. The national designation of the 211 Hotline works like 911 in that an operator will answer the phone and provide information to the caller. As a result of the 211 initiative, families can easily tap into food assistance, health services, and social services that they might not have known existed prior to making the call.
To learn more about the United Way’s programs and affiliates, visit United Way’s website.
To find a local chapter, visit United Way’s local chapter listings.