It was 1956 when a group of families, moms mostly, who had children with developmental disabilities came together and formed The Arc. At that time there were very few options for their sons and daughters. They wanted to change things. Some started schools, some work programs, and some advocated for change.

The first two lobbyists for The Arc were moms, Ilene and Dorothy, who decided that in the all male State House they would stand out by wearing hats.  I think they both would be tickled by recent conversations by people who have very different ways of describing The Arc.

At one meeting we were described as a provider organization since some of those very first Arcs that families formed, and who still have family members serving on their boards, provide services. It would surprise our current state board, which has only one provider representative and 24 family and self-advocate members, that someone considers them to be board members of a provider organization.

At a second meeting, just the next day, The Arc was chastised for being so consumer oriented that we were ignoring the role of providers in addressing the needs of families and people with I/DD. Throughout our history we have embraced that it is essential to have a fair reimbursement system that provides for strong leaders, direct support staff continuity and quality programs. We also want flexibility for families and providers to work together to stretch the money as far as possible.

How people see you is interesting. Just as in those early days when Ilene and Dorothy chose to wear hats to get attention to the issues, The Arc is all about how we make Indiana better for people with intellectual and developmental disabilities and their families. Our mission – guided and supported by our board of directors, a network of 44 chapters and 40 self-advocacy organizations and over 18,000 individual members – is still about change. It is important to remember, however, that to achieve change Indiana also has to have a vibrant provider network that listens to and works with families and is ready to respond to what people want and desire. And, we all must be cognizant of the economic pressures on the state and make sure we use just what we need and stretch resources as far as we can. That means some our very systems need to change.

I think our early founders would share the vision of change adopted recently by The Arc board in our Blueprint for Change. I think they would also say, it doesn’t matter what you call us. I remember one state budget director when being interviewed about people working for a cause, cited The Arc – why we never give up and keep coming back with another idea to solve the problem; and he said Indiana was better because of it.

So, what should people call us? How about effective – effective because of you – moms, dads, brothers and sisters; self-advocate leaders and friends; and, yes, professionals who have dedicated their careers to serving and advocating for people with I/DD and their families through their work and dedication to the local chapters of The Arc.

Yes, I think effective is a good name.

John Dickerson is Executive Director of The Arc of Indiana

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