VOR Notes on the October 2018 Together For Choice Conference

I was unable to attend the Together for Choice Conference last month and appreciate hearing from others who were there. 

I'll start with the last paragraph of an article from the VOR Weekly News Update for 11/2/18 first. I have toured the Misericordia campus and encourage anyone who wants to find out about the Misericordia community to ask for a tour if they are in Chicago.

"The true highlight of the conference was the guided tour of the Misericordia campus, wherein attendees were shown an amazing array of services, residential models, and employment opportunities. Misericordia is a model for services for individuals with I/DD. Our warmest congratulations to Sister Rosemary and the thousands of family members, volunteers, Direct Support Professionals and donors who have made this facility such a beacon of hope for so many."

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from the VOR Weekly News Update for 11/2/18:

Notes on the Together for Choice Conference
Oct. 17 - 19, Chicago, IL

Nearly 200 advocates for individuals with disabilities from 30 states came together for the 2nd annual Together for Choice Conference held at Misericordia, a non-profit organization in Chicago Il. Among them were about a dozen members of VOR. There was a notable lineup of speakers at the conference. Here are just a few:

Sister Rosemary Connelly, Executive Dir. (Misericordia, Chicago Il.) delivered the welcome and opening statements She specifically exposed the “one size fits all” philosophy that has been going on since the 1970’s in which larger facilities are threatened with closure, simply because they are bigger. Sister said: “our purpose is to redefine what community really means. Within that definition, individuals and their families should have choice of where to live, where to work, and who their friends are.” As one of the leaders of Together for Choice, Misericordia led a group of providers, families and self-advocates to D. C. in November of 2017 to meet with their Il. Congressional delegation. One of the self-advocates in the group had previously lived in the larger community, but made the choice to return to a campus setting because she felt isolated. She asked one of the legislators: “How can I make you understand that we are not an institution, we are a community!” Sister Rosemary summed up her comments: “our families asked their elected officials to come and tour Misericordia. When they come, their response is: the bureaucrats don’t like you? You should be a model for the country!” In 2017, due their persistent legislative efforts, Misericordia received a continuum of care license from Springfield.

Melissa Harris traveled by train from her Baltimore office so that she could speak on behalf of Centers for Medicare and Medicaid Services. She told the family members in the audience: “My goal is to answer your questions or take them back and get an answer.” She also said: “you won’t hear from any of us that we know better than you.” Ms. Harris explained the Home and Community-Based Settings Regulation and she left her e-mail for further questions.

Bill Choslovsky gave an inspired presentation on the history of I/DD services from 1960 to present. He spoke of the early progress in development of ICFs and the problems that have arisen since the waiver was introduced. He noted that we should not balk at the definition of an ICF as an institution, that institutions are good, despite how our adversaries debase them. His Olmstead presentation was the centerpiece of his narrative, including Judge Kennedy’s prescient comment, “It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.” Olmstead, at 610.

Mr. Choslovsky singled out VOR’s Caroline Lahrmann as a shining example of advocacy at its best for her countersuit against Disability Rights Ohio for trying to close down ICFs in her state.

Rodney Biggert, of Seneca Re-Ads Industries, detailed the Kafkaesque persecution initiated by Disability Rights Ohio and the Department of Labor against his company for paying specialized wages under the 14(c) certificate. The judge in this case made some unbelievable pronouncements, including the determination that the workers must be proven “disabled for the work to be performed”, a concept that is literally impossible to prove in accordance with the judge’s own criteria.

Other speakers included Douglass O’Brien, the regional director for the Chicago area for the U.S. Dept. of Health and Human Services , David Axelrod, former campaign adviser to President Barack Obama,and Phil Peisch and Chris Lowther, lawyers who worked with TFC and others in standing up to CMS Settings Rule for the limits it imposes on choice in community settings. Representatives from Noah Homes and the Arc of Jacksonville spoke of their work in building intentional settings that stand up against the “Heightened Scrutiny: requirements of the Settings Rule. Congressman Peter Roksam of Illinois’ 6th Congressional District gave encouragement noting the importance of 1:1 visits to legislators and their staff. He said: “personal anecdotes are powerful; continue to build a network, and get them (the legislators) on campus.”
...

Patricia Peterson and Hugo Dwyer

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See also,

VOR Olmstead Resources

Disability Advocacy Alliance, Ohio