Lobbying for Change: A Parent's View
In 1968, Martha Ziegler was preparing to send her 4-year-old daughter with autism to school. So she called her local school district to inquire about the types of programs it had for autistic students.
"The administrator there said, 'Oh, we're thinking about starting some programs for the mentally retarded, but there's nothing for autism,'" she recalled. "Of course, that was perfectly legal."
Little did she know it then, but that response would propel her into a full-time role as a parent activist, lobbying for state and federal laws to guarantee access to education for children with disabilities. She and other parents have been the driving force behind such laws, and like many others, Ms. Ziegler, a former college English professor, has devoted much of her life to helping others obtain educational services for their children.
Until Congress passed the Education for All Handicapped Children Act in 1975, there was no guarantee that a student with a disability would receive a free and appropriate public education, as the groundbreaking federal law stipulates. Every state and district varied in its philosophy and services for special education.
Parents were the driving factor behind the law's passage: For years, they had organized, filed lawsuits, and badgered their local districts to provide educational services for their children with disabilities. Ms. Ziegler was one of the many parents who brought emotional stories to Congress and their state legislatures.
The education path of Ms. Ziegler's daughter, Mary Ann, offers a case study on the uneven state of affairs in pre-1975 special education. As the Ziegler family moved, young Mary Ann went from attending a regular public school to a special preschool to a private school. Sometimes, the state or health insurance paid a portion of the costs of her education and related services; other times, the Zieglers bore out- of-pocket expenses.
Finally, the Zieglers settled in Lexington, Mass., in 1971. The state was then embroiled in debate over a new law to guarantee special education to "the maximum feasible benefit" for a student—a revolutionary concept at the time and a standard higher than the one that would be embodied in the 1975 federal law.
Ms. Ziegler joined the dozens of parents and other advocates who spent their days at the statehouse lobbying legislators; the Massachusetts law was passed in July 1972. Shortly after that, Ms. Ziegler and other parents founded the Federation for Children with Special Needs.
"We knew parents would need a lot of training and information" about the new law, she said. "From day one, we were deluged with business."
Earlier this year, Massachusetts rewrote its special education law and eliminated its far-reaching "maximum feasible benefit" language. ("Mass. Lawmakers Vote To Change Special Ed. Standard," Aug. 2, 2000.)
Eventually, Mary Ann Ziegler was placed in a regular classroom, where she learned academic subjects alongside her peers who did not have disabilities.
Her mother served as the executive director of the federation from 1975 to 1997 and traveled extensively to work with other parents and fight for better enforcement of special education laws. Ms. Ziegler is still active in local, national, and international special education issues from her home in Cambridge, Mass.
Vol. 20, Issue 13, Page 25Published in Print: November 29, 2000, as Lobbying for Change: A Parent's View