The Power of Parents
Changing With the Times
Words matter. Over time, as the words ‘retardation’ and ‘retarded’ became pejorative, derogatory, and demeaning in usage, the organization evolved its terminology to reflect the desires of people with disabilities, and changed its name to ‘The Arc New York’. While the term still appears occasionally, it has largely been replaced, and usage of ‘intellectual disability’ and ‘developmental disability’ continues to spread.
We are doing everything in our power to make sure they’re adopted more broadly and strongly believe the only ‘r-word’ that should be used when referring to people with intellectual and developmental disabilities is respect.
Children with developmental disabilities from two Bronx families were denied admission to public school. No other public/private options were available. In 1948, one of the parents, Ann Greenberg, took out a classified ad in the NY Post seeking other families in similar situations. Several months later, hundreds of people attended the first official meeting.
In 1949, the Association for the Help of Retarded Children, Inc. (AHRC, Inc.) was incorporated with four initial chapters: Long Island, NYC, Sullivan, & Westchester
By March of 1949, various committees were established to address issues such as education, legal affairs, fundraising and public relations.
The organization continued to grow as groups of parents established services in their communities and associated with AHRC.
In 1950, the first professional staff were hired to oversee all Chapters, working out of the NYC Chapter offices. Additional Chapters were chartered in other counties to provide services to children with disabilities.
Parent groups throughout the country met in Minneapolis, MN, to organize a national network of advocacy and research. Today, The Arc New York is a Chapter of this larger network, The Arc US, originally founded as the National Association of Parents and Friends of Retarded Children.
As more Chapters were established outside of the AHRC corporation, the organization decided that another corporate body must be established, and in 1956 the New York State Association for the Help of Retarded Children, Inc. (now NYSARC, Inc.) was founded, with separate offices from the existing Chapters.
After founding twenty more Chapters, the organization decided to combine all Association Chapters into a single unified corporation, and in 1962, the New York State Association for Retarded Children, Inc. was founded, consolidating AHRC and the New York State Association for the Help of Retarded Children, Inc.
In 1966, a bill, promoted by NYSARC, to establish Community Residences (hostels) was signed into law with a $1 million appropriation. A bill the Association supported.
In 1968, the Governor approved legislation establishing “Guardianship of persons with mental retardation” and created a subsidiary, the Sheltered Workshop Program (SEP).
In 1972, the NYSARC Corporate Guardianship Program was created by the Board of Governors. In 1973, parents of 5,000 people living at Willowbrook State School filed a lawsuit in federal court over the inhumane living conditions at the facility. The New York State Association for Retarded Children., Inc. was a Plaintiff.
The Willowbrook Consent Decree in 1975 and ensuing legislation led to the closure of all developmental centers in New York State, established our current system of community supports, and laid the foundation for civil rights laws protecting people with disabilities.
When the Willowbrook Consent Decree was signed, New York State committed itself to a program of improving community placement for the “Willowbrook” residents. Shortly thereafter, NYSARC sued New York State on behalf of individuals living in Wassaic D.C., and Governor Hugh Carey extended similar benefits to all individuals served in New York State’s Office of Mental Retardation and Developmental Disabilities (OMRDD) system.
In 1977, Chapter 987 of the Laws of 1977 was signed into law, creating a separate Office of Mental Retardation and Developmental Disabilities (OMRDD). The organization fought for this legislation for seven years before it was passed.
In 1990, the Americans with Disabilities Act was signed into law by President George H. Bush.
Then in 1998, Governor George Pataki established the NY CARES Act, which created placements for individuals seeking out-of-home placements in community homes and residences.
And in 1999, The Olmstead Act was established, requiring the provision of services in integrated settings.
In 2000, Governor George Pataki announced the “New York State CARES” program, which provided $250 million annually to develop 5,000 new residential placements to address the wait list for out-of-home placements.
In 2003, The Health Care Decisions Act, Section 1750-b contained in the Surrogate’s Court Procedure Act was established, providing for explicit authority for Article 17-A guardianships of the person to make health care decisions, including for the first time, decisions to withhold and/or withdraw life-sustaining treatment.
In 2017, NYSARC rebranded to “The Arc New York,” but its corporate name remains the same. Many Chapters have since rebranded to align with The Arc branding. All have cobranded as Chapters of The Arc New York.
Since its formation in 1949, The Arc New York has served as the primary repository for organizational records, Chapter information, photographs, journals, periodicals, articles of interest, and other information relating to the field of intellectual and developmental disabilities.
The collection, which spans over seven decades, is believed to be one of the most comprehensive collections of archival materials relating to the field of intellectual and developmental disabilities. Among this collection are irreplaceable documents that have been entrusted to The Arc New York for preservation purposes.
The Historic Archives Project was established to prepare the collection to be shared publicly through the development of a searchable online library. Tens of thousands of documents, publications, and other materials are being inventoried, scanned, and prepared for public sharing. The start of the collection became available to the public in October 2018, and will continue to expand over time. Check it out here.
The Arc New York has also created “The Legacy Project: Stories of Love, Determination & Reflection,” which captures, through video storytelling and written words, who we are as an organization, and the struggles and triumphs we have witnessed throughout our history. Check out the videos here.