Celebrating 65 Years of Advocacy and Change

65 years ago on September 25, 1956, a small but mighty group of families came together to establish a statewide organization with the mission of creating a better world for their sons and daughters with intellectual and developmental disabilities in Indiana. While The Arc of Indiana’s name has changed over those 65 years, that core mission has always been at the heart of The Arc at the local, state and national level.

The world for children and adults with IDD was very different 65 years ago. They were labeled as “retarded,” “mongoloid,” and “imbeciles.” (Please note: The “R” word and other outdated terminology is used in this article only for historical purposes.) Doctors told parents to place their child in an institution and move on with their lives. No supports were offered to care for their loved one at home. Schools were dumbfounded if a family took their disabled child to a Kindergarten sign up day.

Throughout Indiana and the country, families said, “NO!” They came together in neighborhood kitchens, church basements, and community centers and establish support networks.

Those early local groups then joined together to form local chapters and what now is The Arc of Indiana and
The Arc of the United States to fight for their children to live, learn, work and participate in their own community – not stowed away and forgotten in a large institution.

Two fearless women, Ilene Younger and Dorothy Burnside, put on their hats and gloves and went to the Statehouse to share with legislators why their daughters and thousands of other loved children deserved to live as full citizens.

Its been a long road. On our 65th Anniversary, we take a moment to pause and reflect on just how much has been accomplished and know that there is still so much more to do moving forward towards the next 65 years of advocacy and change!

The Arc of Indiana History Highlights

1955 – Meeting held to establish a state association at I.U. Medical Center, Indianapolis. “… it is not where we stand, but where we are going that counts. “ –  Joe Newman, Acting President, 1955

1956 – Indiana Association for Retarded Children (IARC) formally organized.

1960 – IARC Office opens at 615 N. Alabama, Indianapolis. Rent: $1.50 per sq. ft. Dorothy Burnside and Ilene Younger become IARC’s first volunteer staff and lobbyists.

1961 – Legislation passed to establish the Division on Mental Retardation within the Department of Mental Health. Federal funds provided to determine if persons with mental retardation can be “more economically cared for” in the community.

1963 – Legislation passed to provide a local property tax to fund community programs – landmark legislation that allowed for the growth of local chapters of The Arc and eventually services around the state. Initially, funds were used to help chapters of The Arc establish small schools. Later, they were used to establish local supports for families and sheltered workshops.

1969 – Legislation passed mandating education for all school-age “handicapped” children beginning in 1973.

1970 – 3-year Residential Services Project serves as a catalyst for development of community residential programs

1974 – Legislation passed repealing all remaining Indiana compulsory sterilization statutes, ending involuntary sterilization of women and men with disabilities.

1980 – Legislation passed prohibiting local zoning ordinances from prohibiting establishment of group homes

1983 – Indiana commits funds for persons to move people with IDD out of nursing facilities and planned growth of group homes begins

1984 – Name changed to Association for Retarded Citizens of Indiana

1987 – Local chapters of The Arc and the Indiana Governor’s Council for People with Disabilities contribute  provide start-up funds to establish The Arc of Indiana Master Trust. The Arc Master Trust is now recognized as a leading special needs trust in the country.

1987 – The Indianapolis Star publishes a series of articles on Marion County’s restrictive zoning practices to keep group homes for people with IDD out of county.

1989 – File an amicus curia brief arguing constitutionality of state zoning law that restricts group homes.

1990 – First meeting of Self-Advocates of Indiana – an organization lead by and for people with IDD

1991 – Legislation passed establishing Indiana’s First Steps/Early Intervention Program, providing an entitlement for infants and toddlers with disabilities or at risk of disability to receive early intervention services. Legislation also established special education pre-school services as an entitlement.

1991 – Legislation (Senate Bill 30) passed, allowing parental income and resources to be disregarded when determining Medicaid eligibility for children under the age of 18 who are in a Medicaid certified facility or who are enrolled or in the enrollment process for a Medicaid Waiver. Prior to this in Indiana, parental income was counted as a resource when determining Medicaid financial eligibility for long term care services in a state institution or nursing facility. Parents could be forced to give up custody of their children in order to get services. Passage of this legislation allowed Indiana’s Medicaid Waiver for home and community based services to be established, providing supports to children and adults with IDD in the family home or their own home.

1993 – Name changed to The Arc of Indiana

1993 – Legislation passed prohibiting the death penalty for people with intellectual disabilities

1997 – Indianapolis TV station WISH/Channel 8 airs a series profiling resident abuse by staff at New Castle State Developmental Center. The movement to close state institutions begins, including New Castle (1998), Northern Indiana Development Center (1998), Muscatatuck (2005), Silvercrest Children’s Development Center (2006). Fort Wayne (2007). Prior to their closure, nearly 46,000 children and adults were institutionalized in these facilities. Eventually large intermediate care facilities (essentially large nursing facilities) for people with IDD have also closed. The fight continues to move people with IDD from nursing facilities to homes in the community.

1998 – The beginnings of The Arc Advocacy Network, our network of family advocates who provide information and support to families and individuals. They first worked with families whose loved ones were transitioning from state institutions to community residential programs.

1999 – Governor Frank O’Bannon signs budget bill with $39.3 million dollars to implement first phase of the 317 Plan a comprehensive plan for home and community based services.

2001 – HB 1122 establishing a mandate for insurance coverage of autism services, including Applied Behavior Analysis (ABA) therapy.

2013 – Issue our Blueprint for Change, recommending strategies for use of public resources to support people with disabilities in the wake of financial downturn, including reform of Indiana’s Medicaid waiver program.

2016 – The Arc of Indiana Foundation’s Erskine Green Training Institute opens and first group of students graduates on March 19.

2017 – Indiana “Employment First” legislation passed, as the state joined 32 others promoting employment as the first goal for people with disabilities.

2019 – Legislation passed to recognize Supported Decision Making Agreements as an alternative to guardianship and requires Less Restrictive Alternatives (LRAs), including Supported Decision Making to be considered before the court will appoint a guardian.

2021 – Achieve bi-partisan support for an $80 million appropriation to increase direct support professional wages.

2022 & Beyond

As Joe Newman, our acting president said in 1955,
“… it is not where we stand, but where we are going that counts.“

We can’t wait to see where we go next!