IDRPP History: The Agent Orange Family Assistance Program

Editor's note: This article was first written for the Institute for Disability Research, Policy & Practice's 35th Anniversary Project. At the time, we were known as the CPD. We have changed the Institute for Disability's name for consistency's sake. The rest appears as it did in 2011.

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 Institute for Disability Research, Policy & Practice 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 IDRPP, 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 IDRPP, 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.