The Atlantic recently published an article, ‘Who Decides Where Autistic Adults Live?’ that highlighted the moral dilemma of how policy can create barriers to the human right to be supported in one’s choice of home and community. The author, Amy Lutz, interviews many individuals with different perspectives and opinions. Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disabilities Services, stands firm in promoting the setting one resides in directly influences one’s experience of isolation, abuse, and segregation. The following leaders of the Coalition for Community Choice were also contacted and quoted in the article:
“Even when living in their own apartments, people can be dehumanized through words or actions and involuntarily segregated by support staff. Physical locations don’t do this, people do.” -Desiree Kameka, Madison House Autism Foundation (National)
“If staff would call out or not show up, you either had overworked, exhausted aides who had to stay, or substitutes sent over by the agency who knew nothing about him or how to handle his self-injury. At Lakeside, he knows everybody. There are so many eyes on him. And if there’s a crisis, there’s always other staff around who can very quickly come help.” -Lisa Parles, Parles-Rekem LLP (NJ)
“My homes [donated homes to be used as group homes] are in nice neighborhoods—do you think the neighbors are asking the residents over for barbecues or to go to the movies? Of course not. There has been no real interaction between the neighbors and the people living in the homes besides the occasional wave.” -Micki Edelsohn, Homes for Life Foundation (DE)[After discussing how his daughter struggled in her own home with supports] “We learned that the human community is all that matters, not the physical community.” -Denny Rogers, Safe Haven Farms (OH)
“Some of the most wealthy towns in New Jersey want to donate land or use their trust funds to build affordable, supported housing and suddenly DDD [the Division of Developmental Disabilities] has changed the name of the game, telling us that residents may not be able to use their waivers… The Rockefeller Group wants to donate the land right across the street from Farleigh Dickinson University and next to the headquarters of the New York Jets. It’s close to public transportation, employment opportunities, shopping. They want us to build 40 units… But if the proposed changes go through we’ll only be able to build four.” -Tom Toronto, Bergen County United Way (NJ) [350 units of affordable, accessible, supportive housing is now on hold because of NJ changing policy]
“Some of them [future residents to the 100 unit planned community] are coming from traditional supported living, where they live in apartments with some assistance, but they are so, so lonely. What they want is a welcoming community. The Village is the best of both worlds: Residents can work, play, and worship in Jacksonville, but come home and hang out with peers in a safe environment.” -Jim Whittaker, The Arc Village (FL)
The Coalition for Community Choice has come together in a united voice to ensure that policy preserves the human rights of individuals with disabilities to be supported in a home and community of their choice. Every individual with I/DD has unique interests, life goals, and support needs; thus, an array of supportive home and community setting options should be available and continually assessed based on the quality of life of those who chose that setting as home. Thank you to those Coalition for Community Choice who contributed to this important article.