In the next month, the CPD will wrap up its 40th Anniversary events. In the spirit of the celebration, we invited Dr. John Copenhaver, Director of the CPD’s Technical Assistance for Excellence in Special Education, to reflect on his career in the field.

Here’s his retrospective:

I was seventeen years old when my high school psychology class took a trip to what was then the state training school in American Fork, Utah.  It was 1964 and “special” education was not very special.  Parents of children with severe disabilities were counseled by doctors and clergy to take their child to the state hospital saying, “it will be better for them and your family.” Individuals with disabilities did not have the same civil rights as others.

I did volunteer work at the state hospital for the next three years and met a wonderful little girl by the name of Gail. She was five years old at the time.  Gail had severe physical and cognitive disabilities and she was placed at the hospital by her parents when she was just a baby.

I know it might sound funny, but even though Gail never uttered a word, we seemed to communicate on a different level. She smiled when I came to feed her. It was quite simple with Gail, it was a communication through heart and spirit.

I was able to get to know her mother and father. They encouraged me. She passed away at ten years and I was able to be part of the service. We visit her gravesite whenever we are in the area.

In those days, the state hospitals were overcrowded, lacking educational programs. They followed a medical model of treatment. The facilities were outdated and depressing. Residents lined the perimeter of the buildings in diapers, rocking back and forth with very little stimulation.

Because of Gail and others like her, I went on to the University to pursue a career in special education. No one in my family had ever attended or graduated from higher education.  I worked full time and went to school full time.  I couldn’t have done it without the support of my wife, Kathy, who went on to become a wonderful second grade teacher. I was determined to make a difference in the lives of children with disabilities.

The same year I began my special education journey, the Civil Rights Act of 1964 passed and outlawed major forms of discrimination against racial, ethnic, and religious minorities and women. About the time I graduated from college, Section 504 of the Rehabilitation Act and Education of All Handicapped Act (EHA) passed and opened public school buildings to all children with disabilities.

My first job in special education was in Elmo, Montana on the shores of Flathead Lake.  Elmo was on the Flathead and Salish Indian Reservation. Special education teachers in the state and throughout the country were provided training on the “Individualized Education Program” (IEP). We invented how the IEP should work. I taught in special education classrooms for the next eighteen years in various school districts in Montana and helped develop over one thousand IEPs.  It was very gratifying to work with parents and children with disabilities. Each child was unique and valued. Between 1975-1990, it was all about physical access, procedural safeguards, and developing appropriate IEPs. During that time, I was blessed to serve as a special education teacher, school psychologist, and special education director.

In 1990, I took a leave of absence from my job in Montana for a position with Mountain Plains Regional Resource Center at Utah State University.  Dr. Glenn Latham was the director when I arrived. Since that time, I have experienced the great fortune of working with and providing technical assistance–or advice on how to enhance special education and meet its legal requirements–to numerous state special education directors across the country, including the BIE.  I have been at all 183 BIE schools in eighteen states.

From 1990-2012, special education started to change.  State complaint investigations and due process hearings increased, and attorneys became part of the educational landscape.  Accountability became a buzzword after the reauthorization of the Individuals with Disabilities Education Act in 2004.  Every State in the country was required to submit a State Performance Plan (SPP) focused on 20 performance and compliance indicators.  Part C has 14 indicators.  Every February, the State is required to submit an annual performance report (APR) that reports the progress of each indicator. IDEA has created an accountability system that involves the IEP for the student, the SPP for the State, and the APR for the school district.  Data, accountability, disputes, and fiscal issues begin to overshadow the focus on the child and their IEP.

In the 1990s and before, the barriers were attitudes and discrimination. Today the barriers for special education are excessive regulations and bureaucracy. Data and accountability are important, but it has been carried to an extreme, at the expense of serving children.

Despite the challenges we currently face, there have been numerous accomplishments over the past thirty years in special education.

• We now have a zero reject policy for children with disabilities in public schools;
• Parents take an active role in their child’s special education program;
• Children with disabilities are viewed as general education first;
• The “inclusion” movement has provided increased involvement in general education for children with disabilities;
• We are using “people first” language out of respect;
• We have eliminated inappropriate language such as “retardation”;
• Infants and toddlers with disabilities now are entitled to services;
• There is more accountability at the State and school district levels;
• Response to Intervention (RtI) systems are getting to at-risk children earlier, before they are placed in special education.

I could go on with more accomplishments we should all be proud of, and continue our efforts to improve programs and services for children with disabilities. This effort should always include families and community.

As I move toward the end of my career, I hope the pendulum starts to swing back to a focus on each child and their IEP team, making sure to always keep the main thing the main thing – children with disabilities and their unique needs.

Dr. Marvin Fifield’s involvement with the CPD began when it was just a concept without a home. When the building opened in 1973, he was its first director. And of all the people who have passed through its doors, he is probably the one who made the greatest impact.

Dr. Sarah Rule, who directed the CPD after he retired, said much of the CPD’s lasting influence could be summed up in one word: policy. Dr. Fifield’s influence is still alive in the laws and procedures he worked on when they were just ideas.

“Marv, as we all know him, would be the last person to take credit for any of the good things that have happened at CPD or in the disability community at large,” wrote Bryce Fifield, Marv’s son and the current director of the CPD.  “However … he been very visible as a facilitator with Senator Orrin Hatch’s Disability Policy Committee.  He has played many important roles in crafting legislation, policy statements, and regulations that have resulted in the Developmental Disabilities Act, the Assistive Technology Act, and the reauthorization of the Americans with Disabilities Act. Language used in these pieces of legislation have also found its way into a host of other laws and position statements.”

It was relatively easier to influence policy at the national level, the senior Dr. Fifield said in an interview earlier this year. He predicts that in the future, the focus will shift.  “We’re going to see more of the implementation is going to be at the state level than at the national level.”

He was involved there, too, wrote the junior Dr. Fifield. “Marv played an enormous role in the early development of Utah’s systems of services and supports for people with disabilities.  Throughout his career, he has worked closely with state legislators, policy makers, advocates, and program managers.  He’s often been an important influence in bringing opposing groups together and finding the commonalities that would unite them to address a challenge or threat.”

Dr. Rule wrote specifically about his role in setting up the Interdisciplinary Outreach Training Initiative. “Marv was responsible for getting a legislative appropriation for a training initiative which is uniquely interdisciplinary in the way it operates. Although the federal mandate to all University Centers of Excellence on Developmental Disabilities is to do interdisciplinary training, this initiative put it into practice. Priority needs are identified by a committee made up of individuals with disabilities, family members, and representatives of each Utah agency that conducts training pertinent to individuals with disabilities. … Marv provided the leadership for conceptualizing how such an initiative might operate, for getting the legislature to fund it, and for putting together the initial group of leaders.”

Here at home, Dr. Marvin Fifield shepherded the CPD through a lot of growth and change.

When he began working with the Exceptional Child Center (that was the first of three names held by the Center for Persons with Disabilities) it was 1969. The center had no building, though a contract had been negotiated for one.

That same year, Utah’s HB 105 required school districts to accept children with disabilities—something that had not been required of them before—and provide an education for them. “Most districts had started something,” he recalled. “Most districts had found ways to avoid providing the whole thing.”

In addition to clinical services, training programs and research projects, the Exceptional Child Center was one of the early special education providers in Utah. It opened in 1973. Its classrooms served students from Logan, Cache and Box Elder school districts.

Since then the focus of the CPD has evolved. Classes for school-age children were phased out and moved to local school districts. Research projects came and went. Through it all, the center grew.

“I’ve been working in one capacity or another for the CPD for 30 years,” wrote Research and Evaluation Division Director Mark Innocenti.  “When I began the Center was smaller, everyone knew each other, and although we were involved in cutting-edge projects, the number of projects was smaller.  Marv was the Director for most of my time here. 

“During these early years the Center grew larger, became even more successful at getting grants and contracts, and continued to do even more cutting-edge activities.  Marv’s approach to leadership was key to the growth of the CPD.  Marv was always an easy to approach person, willing to talk about projects and issues.  Behind the scenes he helped foster the Center’s growth.  Although there are times I miss the smaller, more intimate aspects of the Center where everyone knew everyone, we have become a stronger center. We are engaged in more diverse activities which benefit more people.  Marv’s vision led this growth.”

Another post on the CPD’s main blog remembers his impact on the CPD. Here, we salute his influence on disability history.

Drs. Bryce Fifield, Sarah Rule and Marvin Fifield have all served as directors of the Center for Persons with Disabilities.

Dr. Mario Capecchi was awarded a Nobel prize in physiology or medicine in 2007. Photo courtesy of Steven Leitch, Medical Graphics and Photography, University of Utah.

Martha Maria Hughes Cannon (1857–1932)  was a Welsh-born immigrant to the United States, a physician, Utah women’s rights advocate and suffragist, and Utah state senator. She served as a member of the Utah Board of Health and as a member of the board of the Utah State School for the Deaf.

1879: Ellis Shipp founds the School of Nursing and Obstetrics in 1879. She was one of the first female doctors in Utah. In her 50-year medical career, she delivered more than 5,000 babies—and led the School of Nursing and Obstetrics in training five hundred women who became licensed midwives.

1905: University of Utah Medical School begins as a two-year program, expanding into a four-year medical school in 1942.  In 1977 it formed a partnership with Primary Children’s Medical Center, providing the medical school with a pediatrics teaching and research facility. The medical center has expanded even more in recent years, with the creation of the Huntsman Cancer Institute in 1995 and the expansion of the Moran Eye Center in 2006.

1922: the LDS Children’s Convalescent Hospital (Now Primary Children’s Medical Center) is established. In 1952 the hospital moved to a larger building, eventually becoming the 290-bed Primary Children’s Medical Center.

2007:  Dr. Mario Capecchi of the University of Utah is awarded the Nobel Prize in Physiology or medicine. He and two other researchers were selected for discovering gene targeting in mice. Their work is now being applied to virtually all areas of medicine. “Our ability to identify the genetic and environmental factors that contribute to talents such as creativity are too complex for us to currently predict,” he wrote in a biographical sketch that describes an extremely disadvantaged childhood. “In the absence of such wisdom our only recourse is to provide all children with the opportunities to pursue their passions and dreams.”

2010 Miss Wheelchair Utah Kelie Babcock poses with a young admirer.

The next frontier for many people with disabilities is true inclusion in their communities.

Andy Curry, Chair for the Utah Healthcare Subcommittee, remembered the process of choosing a university a year or two after he started using a wheelchair. The ADA had passed but it hadn’t yet been widely embraced. “It was clear that some of these universities didn’t even want me there,” he remembered. But he found a university that worked, received his degree and moved onto the next hurdle—employment. His conclusion: If a business is located in an inaccessible building, it wouldn’t hire him.

 “With all this accessibility that’s slowly coming about, people with disabilities are able to get out more and attend universities and get jobs,” said Kelie Babcock, education coordinator and peer mentor at the Tri-County Independent Living Center in Odgen, Utah. “People are seeing us, where back years ago they did not see people with disabilities out in the community. … I think that’s big. There’s still a long way to go, but we’ve come a long way.”

Scott Snow, a parent of typically developing children, said Utah County’s integrated services have been good for his kids. They were able to interact with children with disabilities, and they learned to communicate better with a friend whose speech was delayed. “It’s making their experience better and richer,” he said.

Ron Hornsby is a skier—and acquiring a disability didn’t change his love for snow. He recalled a day when he went out on the mountain in a bi-ski (a ski that resembles a toboggan) with the Common Ground program in Logan. “Skiing just came back to me. I’d just lean a little, and I could hear the blades carving into the snow. You can hear it and you can feel it and it was just wonderful.”

People with disabilities ride on dog sleds. Photo courtesy of Common Ground Outdoor Adventures in Logan.

Photo illustration by Kelly Smith.

When Karen Hahne began looking into special education services for her infant son, the problem wasn’t that they didn’t exist. It was that the one nearest her didn’t allow her to participate. A physical therapist who worked with her son Reed refused to show her how to position his back or teach her exercises that would strengthen it because, as he put it, “I don’t work with parents.”

Later, when she offered to volunteer at the school, she was told parents as volunteers would never work. The parents would burn out. The babies would cry.

She and another mother, Brenda Winegar, began working together to start their own program. They met with other parents who wanted to take a more active role in their young children’s education. They played out a story familiar to special education pioneers.  “It was prophetic to call it Kids on the Move, because that’s what we were doing,” Hahne remembers. They moved a lot and operated on little money and lots of enthusiasm. They spent their first $2000 grant on a pencil sharpener and toys.

But their grant-writing expertise increased, their support grew and they eventually built their own facility in Utah County. They outgrew it in five years, conducted more fundraisers and added on. The program now serves 1900 to 2000 families a year.

Half their board members are parents, “To keep us honest.”

Hahne retired from the program seven years ago.

Today, parental involvement is integrated into many early childhood programs throughout Utah and the nation.

People with disabilities in Salt Lake City had tried for nine years to get public transportation the polite way. Then they tried confrontation.

Public transportation for people with disabilities was problematic in the 1980s. It was expensive. Wheelchair lifts on buses broke down a lot, and most buses didn’t have them at all. Utah Transit Authority officials argued that lift-equipped buses were largely unused even when those buses were available. Most curbs would not allow wheelchair users to roll from the walk to the bus.

For the most part, people with disabilities had to use a different system in the Salt Lake City area. Their door-to-door service was segregated, people who used it had to prove they needed it, and it only went to work, the doctor or the hospital.

Activists wanted a system that took them all the places a person without a wheelchair could go.

Mark Smith, the current information specialist at the Access Utah Network, was one of many Salt Lake ADAPT (American Disabled for Accessible Public Transport) wheelchair protesters. They stopped buses and crawled from a wheelchair to a seat in September of 1985. “There are a lot of people who can’t be here [demonstrating] because they can’t ride the bus,” he told reporters at the time. “It’s a Catch-22 situation.”

The protesters’ demands weren’t met immediately. Buses with lifts were phased in on some routes at first. Lift technology improved. Today, “100% of UTA’s fixed route bus and TRAX light rail service is wheelchair accessible with lift-equipped or low floor buses and trains,” says the UTA website.

Smith said consumers can still meet a big barrier between a problem and a solution, but he can now go anywhere that public transit goes.

A group of veterans poses at the Bushnell General Military Hospital in Brigham City.

The practice of institutionalization began in the mid-1800s in the United States. People with intellectual disabilities would often live out their lives in a facility. Children with intellectual and other disabilities learned skills in special schools which may or may not have been residential.

The role of institutions for people with disabilities has evolved over the years, as “special” schools and programs fell out of favor. In some highly publicized national cases, they became havens of neglect. They also segregated people with disabilities.

Families advocated for options that would allow their children to get an education close to home. Today residential institutions are mostly reserved for people who are medically fragile or severely disabled.

1884: The Utah Schools for the Deaf and the Blind begins serving students with sensory impairments throughout Utah for over 100 years. The schools began in 1884 by the Territorial Legislature after a message from Governor Eli Murray which emphasized the need for a school for the deaf.  Twelve years later in 1896, as Utah attained statehood, the members of the Constitutional Convention created the school for the blind.

1885: The Utah State Hospital started with a mission that remains unchanged: to treat people with mental illness and return them to a normal level of functioning. In the 1950s it served more than 1500 patients. In 1969 community mental health centers took over the role of primary service provider. Today the state hospital’s 324 beds are reserved for people who need a more structured setting.

1938: The Utah State Developmental Center (formerly the Utah State Training School) was established on the outskirts of American Fork. The campus has been home for up to 1200 individuals at one time. Currently it serves 235 people, most of whom have severe mental and physical disabilities, and many of whom are medically fragile.

1942-1946: Bushnell General Military Hospital offered rehabilitation to World War II veterans. It specialized in treating amputations. The veterans lived on-site and their families often stayed in Brigham City to be with them, sometimes renting out rooms from the locals.

1972-present: The Center for Persons with Disabilities (then the Exceptional Child Center) began holding special education classes when it opened. Beginning in the mid-1980s those classrooms were phased out, and the school districts assumed the responsibility of educating school-aged children with disabilities in Cache County. The CPD’s Up to 3 and Project PEER programs continue to provide services to very young children and adults with disabilities ages 18 to 21.

Like veterans of all wars, those who served in Vietnam came home bearing physical and emotional scars. Anecdotal reports of veterans’ families in Utah, Wyoming, Nevada, New Mexico and the Navajo Nation are rife with stories of post-traumatic stress disorder, depression, anxiety and substance abuse.

The health problems of their children was an unexpected legacy of the Vietnam war.

Their stories are gathered in the Agent Orange Family Assistance Program’s final report. The project operated out of the CPD in the 1990s. The personal accounts detail an astounding list of health problems among the veterans and their children—heaping additional stress on families that were already suffering. Many of the veterans suspected that their exposure to Agent Orange, an herbicide used to clear away the enemy’s cover, was to blame.

“Coping with children’s birth defects has caused us to be a close family,” said one participant. (All participants who gave a statement did so anonymously.) “Health problems of our children have caused periods of depression, anxiety, financial burdens, limited family size, serious tensions between family members, and we felt there was no one to turn to. My husband always felt Agent Orange was the cause of the birth defects.”

That account is one among scores of stories. Families summed up their challenges in less than a paragraph, and their brief statements were compiled into 65 pages of sad reading.

The herbicides in Agent Orange were contaminated by dioxin, a highly toxic chemical. For decades, the United States government denied any link between Agent Orange and health complications experienced by Vietnam veterans and their children. Today the Department of Veteran Affairs lists 14 diseases linked to Agent Orange exposure, and a correlation between spina bifida in children and the father’s exposure to Agent Orange.

Tom Goonan, who directed the program at the CPD, attributes Agent Orange to a much longer list of health concerns. Still, the assistance offered now is an improvement over the past. It also came to being after a group of the veterans sued the Veterans’ Administration and the manufacturers of Agent Orange.

The suit resulted in an out-of-court settlement in the 1980s. This, too, was controversial—some veterans felt as if their lawyers settled for too little. Nevertheless, after accruing interest for ten years, the money was dispersed. A portion was granted to the Utah region—encompassing people in four states and the Navajo nation. The Utah region’s allotment was administered by the CPD, which already had connections in place to link the children and families of Vietnam veterans to the services they needed.

The funds came with only one court-ordered stipulation: they could not be used for research.

Instead, the program provided services to the families. It offered financial assistance, helped people get to appointments, even provided water heaters for people who didn’t have them. The funds were also used to leverage other grants, until the original $142,000 award for the Utah region grew to nearly half a million dollars. Over the course of the program 874 veterans, 602 spouses and 1,973 children in the Utah region benefited.

“We tried to ease the burden for the families,” said Goonan. “They were just aching.”

He was a Vietnam veteran himself. As a serviceman, he accepted certain risks when he went to war. He returned home to a cold welcome. “The last thing you wanted to be in 1972 was a Vietnam veteran,” he said. “You were so ostracized.”

He didn’t expect that years later, his family would pay the price, too. His two children were born with a cleft lip and a cleft palette. “It took 20 years to get over [the effects of the war], and when I had kids it all came flooding back.”

He wasn’t alone. The report tells story after story of stress, disability and financial hardship. The program ended in 1996, but to Goonan, the project ended long before the work was done.

Still, he acknowledges that the activism of Vietnam’s veterans helped bring about some positive changes in the way the United States now cares for its veterans. Treatment is now available to those who experience post-traumatic stress disorder, and in 1996 the Agent Orange Act extended a few benefits to children of the veterans.

It’s a start, he said.

In 1969, the Utah Legislature passed a law requiring the education of all children over age five, no matter how severe their disability. Parents of children with disabilities worked hard for the passage of House Bill 105, as it was called then.

Lyn Isbel reflected on it a decade later, in the book We Have Been There. “[T]his is where those parents were coming from: Years of running their own day care centers, begging for about-to-be-torn-down buildings, raffles, cake sales, ever higher tuition costs, and no transportation except car pools. … Parents went through all of the hardships above, and more, and all for programs which were constantly running on a shoestring, about to go under, about to be evicted, and quite often not much more than a kind of group baby-sitting anyway.”

Even after HB 105, implementation was uneven. A 1975 report from the Council for Exceptional Children indicated that Utah’s special education law was not fully in place, even six years later. The Center for Persons with Disabilities opened in 1972, with several classrooms for children with disabilities. In those early days, professionals worked with some students and families who had never received services before, especially in rural areas.

“These were kids who showed up at the schoolhouse door and were literally told to go away,” said Alan Hofmeister, one of the CPD’s pioneers. “ It wasn’t until 1975 that federal law [now called the Individuals with Disabilities Education Act] forced schools to take them.”