North Dakota hasn’t always been as welcoming to intellectually disabledGRAFTON, N.D. - A ward at the Grafton State School. Beds lined up in rows one after the other. People wandering around half clothed, restrained in wheelchairs and beds. A campus out in the middle of nowhere.
By: Josie Clarey, INFORUM
GRAFTON, N.D. - A ward at the Grafton State School. Beds lined up in rows one after the other. People wandering around half clothed, restrained in wheelchairs and beds. A campus out in the middle of nowhere.
More than 30 years later, group and adult foster care homes and other options allow people with intellectual disabilities to live within a community, holding jobs and contributing as citizens.
But it took a class-action lawsuit to force the state of North Dakota to make changes before things got better.
The Association for retarded Citizens of North Dakota (now The Arc of North Dakota) filed a lawsuit against the State of North Dakota in September 1980, claiming people’s state and federal constitutional rights were being violated at the Grafton State School and its San Haven campus.
The trial ended in May 1982, when then-U.S. District Judge Bruce Van Sickle ordered reducing the combined population at Grafton and San Haven to 450 by July 1, 1987, and 250 two years later. At the time, Grafton had about 800 residents and San Haven about 250.
But the state appealed the ruling, arguing the changes could cost up to $5 million. Nevertheless, the ruling was upheld in August 1983 by a three-member 8th U.S. Circuit Court of Appeals panel.
Prior to the lawsuit, research by Steven Taylor, coordinator and centennial professor of disability studies at Syracuse (N.Y.) University, was invited by legal services of North Dakota to observe and analyze the two schools in the late 1970s.
Some of the things he saw during his time in North Dakota have been difficult to forget. One image in particular stood out as something he only ever saw at Grafton.
“I came across this young man literally shackled, chained, to the wall,” Taylor said. “I had seen people in strait jackets, cloth ties, but I had never seen anybody chained.”
Taylor, an expert in institutions and facilities for people with disabilities, had conducted similar investigations in Idaho, Georgia, West Virginia and other states before coming to North Dakota.
“When I publish research, it’s pretty hard to see an effect on people’s lives,” he said. “In North Dakota, probably more than any other state I’ve worked in besides New York, I did see a clearer impact of what I’d done.”
After observing Grafton in northeast North Dakota, Taylor then visited San Haven in north central North Dakota for an inspection.
“It was one of the most depressing places I had ever been to,” he said of the former campus, which closed in 1989.
Taylor said he remembers entering a room with beds lined up one after the other with people lying in layers of diapers.
“The sense I got with no one being changed – to think of a human existence of being in bed all day with no stimulation and almost no human interaction – and it really struck me as this is a place to die,” he said.
Taylor said hospitals and institutions always had fancy names and parents were led to believe that their son or daughter needed to be there to get special care.
When he inquired about doctors or experts on staff at San Haven, the attendant said there were no qualified personnel caring for patients.
“I’ve seen similar places, but I’d never seen an institution where the head (staff) admitted there were no professionals,” he said.
After making his observations at the schools, Taylor said he met with some of the parents behind the lawsuit, many of whom were nervous about drawing attention to the matter.
Taylor remembers one parent who worked for the state.
“He felt intimidated. He felt he would jeopardize his job if he as a parent complained about state services with people for disabilities,” Taylor said.
Once his 20- to 30-page report was published, Taylor said The Arc of North Dakota couldn’t remain silent, and they filed the lawsuit.
Taylor said that though he had written reports for several other states and institutions, North Dakota struck him as a very politically charged state.
“In North Dakota, it was a purely defensive response, and (officials) tried to deny that the institutions had serious problems,” he said.
Alex Schweitzer, superintendent for the State Hospital in Jamestown and the Developmental Center in Grafton, said the Grafton State School, which opened in the early 1900s, now has a population of about 94 residents, down from 149 in 2001.
Schweitzer said one way populations were reduced was through community integration, which led to a rise in group homes. He said community atmosphere is important, no matter if a person has disabilities or not.
“We all long to live in an environment where we can live life to the fullest,” he said.
Schweitzer said the lawsuit brought two results.
“It was an impetus to not only deinstitutionalize the schools, but it grew the community system in leaps and bounds,” Schweitzer said.
Tina Bay, director of the Developmental Disabilities Division for the North Dakota Department of Human Services, said people with disabilities have more options today.
In North Dakota, a person with disabilities is encouraged to go to one of eight regional human service centers to undergo a series of assessments to determine what type of care the individual needs, she said.
From there, the person or guardian is able to decide what type of services they would like to receive, which are then usually paid for by Medicaid or Medicare waivers.
The state of Minnesota operates similarly, but options available and funding differ slightly.
David Hallman, foster care licensor for Clay County, said there are three main types of care a disabled person can receive in Minnesota. One of those is through family care, where the individual receives services while living at home with a parent or guardian. The other two options include family foster homes or group-home settings, both of which are required to undergo licensing in order to function.
The system works much the same way in North Dakota, where care can be provided by group-home care or family foster care providers.
Taylor said that through his experience in institutions, the key to care for people with disabilities lies in allowing them to build and maintain relationships, no matter what type of care they utilize.
“It’s not just about following all the rules and regulations,” he said.
Readers can reach Forum reporter Josie Clarey at (701) 241-5529