Starting the Conversation

How do you best start a conversation?

The Indiana Family and Social Services Administration (FSSA) started a conversation several weeks ago about an opportunity Indiana could take through the Affordable Care Act that offers state incentives to serve more people in the community and fewer people in nursing homes and other institutions.  This effort would bring in $20 million a year for three years for services for persons with developmental disabilities, but it would mean making changes in Indiana’s group home program.

This led to two very different conversations over the course of two different nights.

In one, Easter Seals Arc of Northeast Indiana brought together over 50 people who have sons and daughters in group homes for an open discussion about what might happen, what it could mean, what changes parents would like to see, and what parents want to be sure does not change in their sons and daughters lives.  It was a really good conversation that helped every one learn a lot.  Feedback from the meeting – including that people who have lived together for many years want to continue to live together and that others are excited about the possibility of a new living situation – was shared with state officials.  They took that information and began to incorporate it into their continued conversation around group home reforms.

In the other, a provider (that is not a chapter of The Arc) told a group of parents that The Arc of Indiana is abandoning their sons and daughters; we are out to close all the group homes; and we do not care that their children will be scattered to the four winds.  They suggested that the group home would close April 1st; there was nothing anyone could do about it; and The Arc was all behind it.  I talked to several of these families and after getting through their anger and understanding that The Arc was not working against them we had a great talk.

In this day and age it seems anything goes.

It is not clear at that this time if in fact the state will move from having a conversation to actually making any significant change in group homes.  We do know, however, that change is coming in many areas of programs for people with I/DD.  We think it is critical for families and advocates to be part of that important conversation in constructive ways.  Clearly the first approach illustrated here provided good information and an opportunity for families to share their concerns.  The second approach only scared people.

We welcome the opportunity to meet and have a conversation with local support groups, state organizations, family groups and people with I/DD. We will always choose to begin and continue the conversation with fact based information and openness to hear and learn from others.

Call us, email us, share with others in our forums for families, self-advocates and providers.  Let’s start or continue the conversation.

You can reach John Dickerson at: 317-977-2375, 800-382-9100, or thearc@arcind.org. Talk with each other in our family, self-advocate and provider forums.

John Dickerson is Executive Director of The Arc of Indiana