National Down Syndrome Society

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National Down Syndrome Society
NDSS logo.jpg
NDSS Logo
AbbreviationNDSS
Formation1979
PurposeDisability Advocate
HeadquartersManhattan, New York City, New York, US
Official language
English, Spanish
President & CEO
Kandi Pickard
Budget
$2,000,000+
Website www.ndss.org

The National Down Syndrome Society (NDSS) is an American organization that offers support to people with Down syndrome, their families, friends, teachers, and coworkers, and educates the general public about Down syndrome. The mission of the NDSS is to be the leading human rights organization for all individuals with Down syndrome. [1]

Contents

History

The NDSS was founded by Betsy Goodwin and Arden Moulton. Goodwin's daughter, Carson was born in 1978 with Down Syndrome. [2] [3] The parents soon discovered that the support and resources available to parents with Down syndrome children were very limited. Goodwin and Arden created the NDSS, which gained official nonprofit status in 1979. [4] The National Down Syndrome Society envisions "a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities." [5]

Areas of programming

NDSS focuses on four items of programming to enhance the quality of life for those with Down syndrome. [6]

Other Initiatives

Public Webinar

In January 2019, the NDSS had offered a free public webinar on facilitated communication. This communication method is based on the theory that many people that are unable to speak and are not cognitively impaired, but are simply unable to produce the sounds for speech. A helper or "facilitator" assists by guiding the non-speaking person's hand over a keyboard. Many masked independent tests and studies have suggested that the facilitator is actually the one doing the typing, and not the person with the disability. Stuart Vyse, reporting for Skeptical Inquirer, commented that "Given NDSS's mission of being 'The leading human rights organization for all individuals with Down syndrome,' it is not surprising the organization supports a communication method that [Christy] Ashby [PhD] described as a 'human right and a civil right.' Nonetheless, it is unfortunate that a leading Down syndrome advocacy group is promoting a belief system over evidence-based methods that work." [10]

Probability of conceiving a child with DS (maternal age)

Information provided by NDSS:

Whose information can be found on their website. [11]

Related Research Articles

Down syndrome Genetic disorder, also known as "trisomy 21"

Down syndrome or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual disability, and characteristic facial features. The average IQ of a young adult with Down syndrome is 50, equivalent to the mental ability of an eight- or nine-year-old child, but this can vary widely.

Advocacy is an activity by an individual or group that aims to influence decisions within political, economic, and social institutions. Advocacy includes activities and publications to influence public policy, laws and budgets by using facts, their relationships, the media, and messaging to educate government officials and the public. Advocacy can include many activities that a person or organization undertakes, including media campaigns, public speaking, commissioning and publishing research. Lobbying is a form of advocacy where a direct approach is made to legislators on a specific issue or specific piece of legislation. Research has started to address how advocacy groups in the United States and Canada are using social media to facilitate civic engagement and collective action.

Facilitated communication (FC), or supported typing, is a scientifically discredited technique that attempts to aid communication by people with autism or other communication disabilities who are non-verbal. The facilitator guides the disabled person's arm or hand and attempts to help them type on a keyboard or other device.

Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.

Population Connection is a non-profit organization in the United States that raises awareness of population challenges and advocates for improved global access to family planning and reproductive health care. The organization was founded in 1968 by Paul R. Ehrlich, Richard Bowers, and Charles Remington in the wake of Ehrlich's best-selling book, The Population Bomb. The organization adopted its current name in 2002.

Deafblindness Condition of little or no useful sight and little or no useful hearing

Deafblindness is the condition of little or no useful hearing and little or no useful sight. Different degrees of vision loss and auditory loss occur within each individual, thus making the deafblind community unique with many types of deafblindness involved. Because of this inherent diversity, each deafblind individual's needs regarding lifestyle, communication, education, and work need to be addressed based on their degree of dual-modality deprivation, to improve their ability to live independently. In 1994, an estimated 35,000–40,000 United States residents were medically deafblind. Helen Keller was a well-known example of a deafblind individual. To further her lifelong mission to help the deafblind community to expand its horizons and gain opportunities, the Helen Keller National Center for Deaf-Blind Youths and Adults, with a residential training program in Sands Point, New York, was established in 1967 by an act of Congress.

Autism rights movement Disability rights movement

The autism rights movement, also known as the autistic acceptance movement, is a social movement within the context of disability rights that emphasizes a neurodiversity paradigm, viewing the autism spectrum as a result of natural variations in the human brain rather than as a disease to be cured. The movement advocates for several goals, including greater acceptance of autistic behaviors; services that focus on improving quality of life rather than on imitating the behaviors of neurotypical (non-autistic) peers; and the recognition of the autistic community as a minority group.

Mass communication is the process of imparting and exchanging information through mass media to large segments of the population. It is usually understood for relating to various forms of media, as its technologies are used for the dissemination of information, of which journalism and advertising are part. Mass communication differs from other types of communication, such as interpersonal communication and organizational communication, because it focuses on particular resources transmitting information to numerous receivers. The study of mass communication is chiefly concerned with how the content of mass communication persuades or otherwise affects the behavior, the attitude, opinion, or emotion of the people receiving the information.

Chris Burke (actor) American Down syndrome advocate

Christopher John Burke is an American actor. He has become best known for his character Charles "Corky" Thatcher on the television series Life Goes On.

Augmentative and alternative communication Techniques used for those with communication impairments

Augmentative and alternative communication (AAC) encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. AAC is used by those with a wide range of speech and language impairments, including congenital impairments such as cerebral palsy, intellectual impairment and autism, and acquired conditions such as amyotrophic lateral sclerosis and Parkinson's disease. AAC can be a permanent addition to a person's communication or a temporary aid. Stephen Hawking used AAC to communicate through a speech-generating device.

The following outline is provided as an overview of and topical guide to autism:

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.

CNIB Foundation Organization for the blind

The CNIB Foundation is a volunteer agency and charitable organization dedicated to assisting Canadians who are blind or living with vision loss, and to provide information about vision health for all Canadians. Founded in 1918 as the Canadian National Institute for the Blind to assist soldiers who had been blinded in the First World War, CNIB originally offered sheltered care and specialized employment to people with vision loss. It has since expanded to include other programs and services, including research, public education, rehabilitation counselling and training, advocacy and an alternative-format library for people living with a print disability. It is a member of the Braille Authority of North America.

Autism National Committee U.S. nonprofit organization

The Autism National Committee is an American advocacy association of autistic people and their allies. Autism National Committee operates as a 501(c)(3) non-profit organization.

Equality Florida

Equality Florida is a political advocacy group that advocates for civil rights and protections for lesbian, gay, bisexual, transgender, and queer (LGBTQ) residents of the U.S. state of Florida.

California Autism Foundation (CAF) is a 501(c)(3) non-profit organization headquartered in Richmond, California.

Office of the Secretary-Generals Envoy on Youth

The Secretary-General's Envoy on Youth serves as a global advocate for addressing the needs and rights of young people, as well as for bringing the United Nations closer to them. The Envoy's Office is part of the United Nations Secretariat and supports multi-stakeholder partnerships related to the United Nations system-wide action plan on youth and to youth volunteer initiatives. The office also promotes the empowerment and foster the leadership of youth at the national, regional, and global levels, including through exploring and encourages mechanisms for young people’s participation in the work of the United Nations and in political and economic processes with a special focus on the most marginalized and vulnerable youth.

HASA is a social benefit 501(c)(3) organization located in Baltimore, Maryland, that specializes in facilitating communication. Established in 1926, the organization provides special education services through Gateway School, audiology and speech-language services through its Clinical Services Department, and interpreting services for the deaf through its CIRS Interpreting Department.

The rapid prompting method (RPM) is a pseudoscientific technique that attempts to aid communication by people with autism or other disabilities to communicate through pointing, typing, or writing. Also known as Spelling to Communicate, it is closely related to the scientifically discredited technique facilitated communication (FC). Practitioners of RPM have failed to assess the issue of message agency using simple and direct scientific methodologies, saying that doing so would be stigmatizing and that allowing scientific criticisms of the technique robs people with autism of their right to communicate. The American Speech-Language-Hearing Association has issued a statement opposing the practice of RPM.

Dr. Jessica L. Benham is an American politician and disability rights activist serving as a member of the Pennsylvania House of Representatives for the 36th District. She is the first openly LGBTQ+ woman and first openly autistic person elected to the Pennsylvania General Assembly. Benham is one of the only autistic state lawmakers in the United States. She cofounded the Pittsburgh Center for Autistic Advocacy in 2014.

References

  1. "Mission & Vision - National Down Syndrome Society". www.ndss.org. Retrieved 2017-01-11.
  2. Sara, Sally (2008-06-01). "For People With Down Syndrome, Longer Life Has Complications". The New York Times. ISSN   0362-4331 . Retrieved 2020-04-19.
  3. Hennessey, David; Writer, Staff (2011-09-24). "State girl with Down syndrome to be featured in Times Square video". Connecticut Post. Retrieved 2020-04-19.
  4. "Guidestar". www.guidestar.org. Retrieved 2021-06-29.
  5. "Enhancing Opportunities for People with Down Syndrome".
  6. https://ardownsyndrome.org/wp-content/uploads/2016/09/NDSS-Brochure.pdf [ bare URL PDF ]
  7. "Times Square Video Presentation".
  8. "Woman details inequities of living with Down syndrome in popular TikTok video".
  9. "A Woman with Down Syndrome Has Fought for Organ Transplant Anti-Discrimination Legislation for Years; Now, It's Been Proposed, and Named After Her". Forbes .
  10. Vyse, Stuart (16 January 2019). "National Down Syndrome Society Promotes Communication Pseudoscience". csicop.org. CSI. Retrieved 17 January 2019.
  11. "What is Down Syndrome? | National Down Syndrome Society".