Suzanne “Susy” Woods June 11, 1948-Dec. 8, 2023

Long before Susy Woods began advocating for children with disabilities throughout Illinois, she graduated from high school at Ursuline Academy and was preparing to become an Ursuline nun and teach.

She left the convent after an accident caused her to have seizures that interrupted her studies. "The Ursulines felt that their way of life would be too hard for Susy,” Diane Steinhauser, one of Susy’s two younger sisters, said.

Many years later, after marriage and children, Susy found her calling in a life of service to thousands of children with disabilities and their families in Illinois. She didn’t teach children, but she became an expert in disability laws and taught parents how to navigate special education in their schools.

Susy continued to talk to families and participate in meetings by phone, even from the hospital, until she died at her home in Springfield on Dec. 8 at the age of 75.

Not long after leaving the convent, Susy met her husband, David, a cattle and hog farmer. They lived on the family farm near Carlinville and had two children, Rachael and Adam.

While Rachael gave Susy four grandchildren and a great-grandchild, Adam was the reason Susy found her passion and calling, Steinhauser said. Adam was born with severe heart and lung problems and a developmental disability. The heart issue required multiple surgeries, treatments and long hospital stays.

Meeting Adam’s educational needs was challenging, but Congress enacted the Education for All Handicapped Children Act (later known as IDEA) about four years before Adam was born, and Susy was determined to use it.

At one point, Adam’s school district wanted to bus him to a special school that would have required him to be on a school bus for four hours a day. Susy wouldn’t allow it.

“That is when I remember Susy becoming the fierce advocate she was for people with disabilities,” Steinhauser said. “First for her child, and then for others as she met and talked to other parents in her same situation.”

Susy worked as a computer programmer for the Illinois Department of Revenue when her children were young. For many years, she worked nights for the state and days for Adam, researching and advocating.

She retired from the state after 25 years and went back to school. She received a bachelor’s degree in political studies and policy from University of Illinois Springfield when she was 54, a master’s degree when she was 57 and a doctorate in educational leadership from Walden University when she was 61.

She may have been accurately described as Dr. Susy Woods, Ed.D., but she didn’t sign her documents that way, and some people never knew she had a doctorate degree.

Susy then worked as the director of disability services at University of Illinois Springfield and an adjunct professor for a few years before she began working for the Illinois Assistive Technology Program 18 years ago as the policy and education liaison.

In the last five years, Susy helped more than 4,935 families, Wilhelmina Gunther, IATP chief executive officer, said. That reflects the number of Individualized Education Plan (IEP) meetings that Susy attended in person or by Zoom or telephone from every corner of the state of Illinois. There were many more phone calls to prepare for meetings and with families who would call for help, and the services were provided at no cost.

“Families called her at all hours of the night and day,” Gunther said. “I would tell her she should shut off her phone at night and she would respond: ‘Parents’ time is limited, so I will be available to talk to them whenever they call.’ ”

Susy never turned a family away, said Phil Milsk, an attorney from the Chicago area, who worked closely with Susy on complex cases or if the family couldn’t resolve a dispute with the school and wanted to try mediation or a court hearing.

However, he said Susy was so good at remaining neutral by explaining the law to parents and finding a middle ground with the school that 95% of the cases never went to court.

“Susy worked to make parents an equal participant,” Milsk said. “She conveyed her knowledge to families, educators and even some lawyers. They loved her.”

Susy also was a registered lobbyist, working with Milsk representing disability groups such as the Arc of Illinois and March of Dimes. She served on many disability councils and committees including two that were appointed by the governor. She was influential in numerous changes to Illinois laws or policies, sometimes minor tweaks that made a difference in the lives of people with disabilities.

Milsk said there is a real void of support for parents in Illinois now that Susy is gone, and it will be nearly impossible to find someone to do what Susy did.

“Let’s face it,” Milsk said. “She was a saint.”

Susy guided Theresa and her son, Daniel Olsen, for more than 15 years through the ups and downs of middle school, high school and college. Daniel says Susy was like a second mother to him. He wants to be a disability advocate like Susy and is sad that she won’t be at his college graduation.