The Power of Parents

In 1950, little was known about intellectual disability (then referred to as ‘mental retardation’) and developmental disability, or its causes. There were virtually no programs and activities to assist in the development and care of people with I/DD or to support families. It was common for doctors to tell parents that the best place for their child was in an institution. But these advocates wanted more. They wanted their loved ones to lead fulfilling lives in the community and not be shuttered away in dark institutions. Emboldened by their collective desire to raise their children in the home and their refusal to accept that institutionalization was the only option, The Arc was born.

Through the decades, The Arc has advocated for the passage of state and federal legislation on behalf of people with disabilities and established a broad network of state and local chapters that range from small voluntary groups to large, professional organizations.

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’. 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.

Name History
1953 – 1973: National Association for Retarded Children (NARC)
1973 – 1981: National Association for Retarded Citizens (NARC)
1981 – 1992: Association for Retarded Citizens of the United States (ARC)
1992 – Present: The Arc of the United States (The Arc)

Timeline: The Arc Through the Years

Over the last several decades The Arc has been at the forefront of making change happen. Whether through advocacy or by supporting research efforts, The Arc leads the way. Here are just a few highlights!

1950s

Parent groups throughout the country meet in Minneapolis, MN in 1950 to organize The Arc (originally the National Association of Parents and Friends of Retarded Children).

The Arc becomes the first organization to put money into research on intellectual and developmental disabilities.

The Arc intensifies its advocacy for research and asks Congress for full support for an International Research Plan.

1960s

The Arc opens a Governmental Affairs (Public Policy) Office in Washington, D.C.

The Arc is represented on the first President’s Panel on Mental Retardation (PPMR).

The Arc’s advocacy with other national organizations results in the enactment of Medicare and Medicaid.

The Arc helps expose the link between lead poisoning and harmful effects in infants and children.

1970s

The Arc advocates for the creation of the Supplemental Security Income program to provide income for persons with severe disabilities who have little or no income.

Large numbers of people begin to leave institutions as services for people with disabilities emerge within communities.

The Arc works with other organizations to push for the establishment of the Medicare and Medicaid programs, the Developmental Disabilities Services and Facilities Construction Amendments of 1970 and subsequent amendments, and P.L. 94-142 (precursor to IDEA) which guarantees a free and appropriate public education for all children with disabilities.

With research funding support from The Arc, Kenneth Jones, M.D, defines the disorder Fetal Alcohol Syndrome.

1980s

The Arc conducts a survey of state genetic screening programs. A listing of each state’s specific infant screening tests is developed and distributed to The Arc’s state and local chapters.

The Arc supports the passage of the Medicaid Home and Community-Based Waiver.

The Arc helps create the Supported Employment program within the Rehabilitation Act.

The Arc successfully pushes Congress to add disability as a protected class under the Fair Housing Act.

The Arc helps pass legislation to expand education services to infants, toddlers, and preschoolers.

1990s

The Arc receives a grant from the U.S. Department of Energy to implement a project to educate The Arc community about the ethical, legal, and social implications of the Human Genome Project.

The Arc receives a grant from the Centers for Disease Control and Prevention to support the development and dissemination of the Fetal Alcohol Syndrome Resource and Materials Guide.

The Arc is a leader among national disability groups to advocate for the landmark Americans with Disabilities Act.

2000s

The Arc participates in the drafting of the United Nations Convention on the Rights of Persons with Disabilities.

The Arc wins expanded provisions in the Individuals with Disabilities Education Act and the Higher Education Act that will help students move from public schooling to higher education, employment, and adult life.

The Arc, in collaboration with the American Association on Intellectual and Developmental Disabilities, publishes National Goals and Research for People with Intellectual and Developmental Disabilities, a book highlighting challenges to achieving the government’s promise to people with disabilities.

2010-Present

The Arc works with other organizations to support passage of the Affordable Care Act, which expanded access to affordable and comprehensive health coverage, made improvements in long term supports and services, and strengthened consumer protection and nondiscrimination provisions.

The Arc supports passage of Rosa’s Law, which replaces the outdated term “mental retardation” with intellectual disability in federal health, education, and labor policy.

The Arc supports passage of the ABLE Act which creates tax-advantaged savings accounts for individuals with disabilities which are exempt from means-testing in federal programs.

The Arc is instrumental in defeating attempts by Congress to block grant and cap Medicaid, a change in the structure of the program that would have had great impact on the lives of people with disabilities.