Beyond the ADA

As the new millennium arrived, the right of citizens with disabilities to vote had emerged as an area of intensifying focus. In 2002, the same year that Congress passed the Help America Vote Act and four years before its implementation in Indiana, the GPCD funded Count Us IN. This project aimed to improve access to polling places by Hoosiers with disabilities and increase their involvement in the electoral process. 

"If I can’t go where I’m trying to go, nobody else is going anywhere."

Partners in Policymaking
Judy Patterson

Transportation has been a perennial concern of people with disabilities who don’t drive, especially in a rural state such as Indiana. The larger cities have presented challenges as well. In a 2006 interview, Judy Patterson talked about getting to her job as a substitute teacher in the Gary Community Schools. One morning the driver of her bus told her the wheelchair lift was out of order. There was snow and rain and she was on a schedule. “I just parked my chair in front of the bus and I said,If I can’t go where I’m trying to go, nobody else is going anywhere.” “I figured that the day I did that, it opened up the door for me helping others that are having the same problem. A statewide transit advocacy organization, The Indiana Citizens’ Alliance for Transit, arose out of a series of public forums in 2008.

More recently, the Livable Communities movement has taken hold in Indiana. Advocates for livable or “lifetime communities” promote a holistic, universal approach to designing environments that allow people of all ages and abilities to flourish. Michelle Bovenschen was part of a group of self-advocates who participated in a 2012 livability assessment in Bloomington. Her group included people using walkers and wheelchairs. "I saw how much they had trouble being around things like the light poles that are on the sidewalks [and] should be on the street, trash cans that were not accessible... debris, no sidewalks."

Hoosiers with disabilities receiving SSI needed to pay 80 percent of their income in order to rent a one-bedroom unit.

The Early Days of Back Home in Indiana Alliance
Deborah McCarty, Executive Director of the Back Home in Indiana Alliance

The ADA’s 25th anniversary in 2015 was cause for celebration. Yet advocates were continuing to press for its enforcement and to prevent dismantling of the historic legislation. Much work remained to be done. Hoosiers with I/DD on average are more likely to live in a nursing home or large (8-bed) group home than their counterparts in other states. About 26 percent of working-age Hoosiers with disabilities were living below the poverty line, as of 2015. The most recent Priced Out report (2014) reveals that Hoosiers with disabilities receiving SSI (Supplemental Security Income) needed to pay 80 percent of their income in order to rent a one-bedroom unit priced at the HUD-specified Fair Market Rent. The Back Home in Indiana Alliance, which began focusing on increasing low rates of home ownership among people with disabilities in 1997, is working to advocate for a larger supply of integrated housing in the state that is both affordable and accessible.

"Indiana has reallocated insufficient resources from the institutional facilities it closed to community and family support services."

To address the stagnating, low rate of employment among individuals with disabilities, the Indiana General Assembly successfully passed “Employment First” legislation in 2017. Another urgent employment concern of advocates is the uncompetitive wage earned by community-based direct support staff. The need for these professionals is projected to grow: Most Hoosiers with intellectual and/or developmental disabilities, who are living longer due to advances in healthcare, reside with their families. And their parents and sibling caregivers are aging. According to researcher David Braddock, the state is not adequately addressing this crisis. “Indiana has reallocated insufficient resources from the institutional facilities it closed to community and family support services.” 

Mark Hublar in Washington, D.C.
Mark Hublar in Washington, D.C.

"I know what my purpose is."

In 1964, the year that Mark J. Hublar of New Albany, Indiana was born, other southern Indiana children with Down syndrome were still among those locked away at Muscatatuck State School. There, residents worked the farm without pay. Forced sterilizations would not halt for another ten years. Mark grew up at home with his family. He graduated public high school and, through Down Syndrome of Louisville College Connections, returned at age 49 to complete his education at Jefferson Community & Technical College. Today he is a motivational speaker addressing audiences around the nation. Al Hublar recalls a day some years earlier, when he was in the car with his son. "I said 'Mark, what's your purpose?'  And Mark said, 'What's a purpose?'  And I said, 'That's what God puts you here for.' And so he didn't say anything, and about a month later said, 'I know what my purpose is. And my purpose is to help everybody achieve the goals that I have and to have a real job and a real life.'"