from the Spring 2013 Albany Law Magazine
Pat Muir considers herself a capable advocate for her 33-year-old son Nathan, who has autism. But her efforts to improve Nathan’s situation at O.D. Heck, a state-run facility in Schenectady, N.Y., had repeatedly failed.
“It was like fighting shadows,” she said. “There was no one to hold accountable. When I mentioned things they were not doing that they were expected to do, they changed the documentation to make things harder to prove. I was told that my complaints would provoke the staff to be less cooperative.”
After years of struggling, a letter came from Albany Law’s Civil Rights & Disabilities Law Clinic offering legal representation. “I opened the letter, and I stood in my driveway and cried. Somebody else saw what I saw.”
Robin Hickey had a similar experience with her adult son Michael, also autistic. “For more than a year I would ask to see some evidence of progress based on the plan we put in place. They [O.D. Heck staff] always complained about being short-staffed, they never did what they said they would do.”
Today, with the help of the School’s Clinic—four students and a professor—both families are optimistic about their sons’ future, but acknowledge that every forward step requires the Clinic’s legal skills and dogged persistence.
“The Clinic comes at it objectively, with a broad vision to influence the entire system,” said Robin Hickey.
“The Clinic knows how to hold them accountable,” said Pat Muir. “They know the law, they know the pressure points.”
“I love this work, I love representing people who need our help,” said Shari Rolnick ’15, from Forest Hills, Queens, who has been working on the case with the Clinic’s director Professor Bridgit Burke ’89.
Rolnick and Burke attend quarterly meetings with the family and the facility’s administrators. Rolnick will also visit the facility with or without Professor Burke, observe the patients, and examine records and logs, noting that she isn’t always welcome but feels protected by the law for specific activities. “I’ve learned a lot just by observing Professor Burke handle the situation,” Rolnick said.
Rolnick often brainstorms with Clinic colleague Jamie VanDenburgh ’14, who represents a different family at O.D. Heck. “There’s always another thing that can be done, a new angle, a letter to write, a new point to make,” she said. “Some students’ clients do not have involved parents. That’s a very different experience. My case is a collaborative effort with the family.”
“The students, through their research, their incessant presence as advocates—through letters and visits—keep the issues out in front for the administration to deal with,” said Robin Hickey. “In theory, I should be able to do this work, but all of Michael’s progress could never have happened without the Clinic’s help.”
“Jamie VanDenburgh has been great,” said Pat Muir. “They’re always having meetings and conversations with the administration, Jamie is always keeping the issue in front of them, and then informing me of progress.”
The state-run institution serves as a crisis center, a temporary stay to stabilize the patient, with the goal of moving the patient into a setting more integrated with the community, the goal for both Michael and Nathan. In reality, patients can flounder there year after year. In 2007, 13-year-old Michael Carey died from asphyxiation, when, as reported numerous times, a staff member sat on him while another staff member watched. Under that cloud, the Clinic students, who are not always made to feel welcome, assert their right to examine records and look after their clients’ well-being.
“You can see they often violate their own plan,” said Professor Burke. “Michael has a communication device, but O.D. Heck staff never use it. This year the Muir’s, from Rochester some 200 miles away, have asked to Skype with their son.”
“Nathan responds best to questions when he can see us, and of course we would like to see him, so we have asked the facility to help us Skype with him,” explained Nathan’s mother Pat, noting that she received a fairly typical response. “They tell us it’s not required by the rules and regulations. But they have computers, they have Internet access, it’s a very simple accommodation that we should be able to work out.”
“The agencies rules require the agency to make it possible for Nathan and the other residents to talk to their family regularly by phone,” said Professor Burke. “The visual communication by Skype is the type of reasonable accommodation that is required by the Americans with Disabilities Act.”
While it took over six months, the agency now allows families to Skype to communicate, eventually conceding that it is a reasonable accommodation.
“Often we think they are violating the Americans with Disabilities Act, and they don’t agree, so we have to take the next step,” said Rolnick.
The Clinic’s advocacy has already helped 12 patients move into community settings. “Once they move, they really come alive,” Professor Burke said. “They go to events, they do simple jobs, they build relationships, they feel good. Here the institution monitors every moment, everything they eat, where they go, there is no freedom, no choices to make and they are completely segregated. That’s why families want to see progress and ask for our help to advance their child to the next level.”
“When I look at Nathan today,” said Pat Muir, “I know it’s in large part because of the Clinic’s involvement. I remember the helpless feeling I had just a year ago. I was concerned that he would regress. Today I feel very hopeful.”