(Nashville) Rape, abuse, neglect and lonely death filled the testimony given today by survivors of institutionalization. ADAPT, the nations largest grassroots direct-action organization of people with disabilities, coordinated witnesses for the first ever National Day of Testimony to document the human impact of the institutional bias in the United States.
LaTonya Reeves moved away from her family in Memphis to avoid returning to a nursing home. Tennessee does not offer alternatives to expensive and undesirable institutions forcing citizens like LaTonya, a wheelchair user, to leave home for a facility.
“One day I had an accident and the nurse made me wash my face in it,” Ms. Reeves said about the nursing where she once lived. “She filled the bathtub with cold water and made me stay there for two hours. She said: ‘If you don’t stop screaming I’ll come and drown you.’”
The sixty witnesses were individuals that had been placed in an institution because of a disability and had successfully moved out of the facility into their own home. The national panel was made up of private and government organizations that deal with disability policy. Andrew J. Imparato from the Ticket to Work advisory council, Jim Ward the leader of ADAWatch, John Lancaster the Executive Director of NCIL, Gwen Gillenwater of AAPD, Dr. Margaret Giannini, Director of the Health and Human Service Office on Disability, and Carol Novak of the National Council on Disability.
“These nightmares are only the tip of the iceberg, they are the voice for so many voices that cannot be heard,” said Stephanie Thomas of ADAPT. “The fact of the matter is for that system what people with disabilities really are is the crop. We are the crop. We are there to fill beds, so they are warm beds, so they get paid. That is what it is about, and that is what it’s got to stop being about. It’s got to be about people’s lives, and that is the voice we have got to give the message this week. That is the voice we have to bring out there. Yeah it is a nightmare, but I will tell you something else that you hear when you listen to those stories: The people that told them are damn strong people.”
The testimony is intended to put a human face on immoral policy of requiring expensive institutional services while making home and community based services optional. Because of this built-in bias in Medicaid policy, the lion’s share of public funding goes to the nursing home industry and state institutions. States like Tennessee are tempted to cut home and community-based services to save on the federal Medicaid spending, even though those are the more desirable and cost-effective programs.
The fractured federal policy makes it possible for people like LaTonya to leave a nursing home in Tennessee to live and work in another US state where she can receive home and community-based services. A banner across the back of the auditorium where the testimony was given showed the Colorado and Tennessee state flags on either end of the sign. Between the flags were photos of about a dozen people with the caption: “The Underground Rail Road,” comparing escaping institutions to crossing state lines to flee slavery.
The national panelists expressed their shock.
The crowd at the testimony warmly received Jim Ward’s comments. The Hilton Hotel – Volunteer Ballroom was packed with many people using wheelchairs and hundreds of ADAPT Activists. Mr. Ward noted that Robert Kennedy had gone to see the inhuman conditions at Willowbrook forty years ago on this day. Willowbrook later became the impetus for many reforms laws of abusive and neglectful institutions.
Andy Imparteo noted his surprise that about four-out-of-five witnesses spoke of forced medication as an unnoticed form of abuse.
“Today I heard your message, a strong message,” he said, “that there are ongoing human rights violations inside institutions.”
“I am most impressed by the abuse and neglect,” said Dr. Margaret Giannini, “I believe you will help to change the system and end this institutional bias.”