IDEA Changes Lives: Forty Years of Parent Training and Support

2015 marks the 40th anniversary of the Individuals with Disabilities Education Act (IDEA). In the same year, the first center to help parents understand IDEA and how to advocate for their children with disabilities was born.

The first center received funding after Harvey Liebergott, then director of the Recruitment and Information Program, Bureau of Education for the Handicapped of the U.S. Department of Health, Education and Welfare, met Martha Ziegler, director of the newly formed Federation for Children with Special Needs in Boston, Mass. Martha was a key parent leader who worked to pass the Massachusetts’ special education law, which in turn influenced the federal law. Martha had an idea for a walk-in parent information center.

In an April 4, 1975 letter to Martha providing funds for a pilot center, Harvey wrote, “Although we are not yet ready to commit ourselves to the funding on a long term basis, we would like to find a way to fund your proposal for the short term as a pilot for a period of six months to begin to implement a systemic method to do information and referral with follow-up…And in thinking of the long term, we do not anticipate funding projects for more than three years, establishing some basis for the centers to survive once federal support has ended. We estimate it will cost about ten million dollars to maintain comprehensive information and referral centers nationwide.” In an April 10, 1975 letter, Martha accepted the challenge of creating the pilot center, saying, “We expect to make some false starts…the essential point is to develop a working model.”

Forty years later, Martha’s commitment to providing parents with information and training has led to a large network of federally funded centers. Parent Training and Information Centers (PTIs) provide services to families in every state, the District of Columbia, Puerto Rico, and the Virgin Islands. Federal investments in parent training and information grew to include Community Parent Resource Centers (CPRCs) that serve parents in the most need of information and training in 30 communities as well as technical assistance centers that help parent centers provide the best information and support to families.

Harvey spoke at Martha’s memorial service in October 2014, saying, “She prodded and assisted everyone who could help. Martha saw the other organizations as allies, not competition. And she had lists of every relevant advocate and every constituency, with their needs and goals. Martha’s pitch was simple: all of the other groups included disproportionate numbers of children with special needs. She intended to support them and hoped that they would support her. They did. In Washington, Martha worked both sides of the aisle, and became a driving force in writing and passing and implementing virtually all of the important disability legislation of our time.”

The work that began in April 1975 continues every time parent centers develop the next generation of parent leaders and self-advocates. Martha’s legacy endures when families and professionals work tirelessly together to fulfill the promise of IDEA to improve “educational results for children with disabilities [as] an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”

Contributing writer: Rich Robison, Executive Director, the Federation for Children with Special Needs

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Carmen M. Sánchez is an Education Program Specialist with the Office of Special Education Programs, U.S. Department of Education

Know It 2 Own It: Advocating for Your Rights on Campus

As we approach the end of the school year, most high school seniors are preparing for graduation and their future. At this time, I’m reminded that each passing year, more and more students with autism and other disabilities are attending college with their peers. For many of them this will be their first time away from home, a time for excitement and a time for independence. It will also be the first time where they will be responsible to advocate for their own needs at school.

The transition from high school to college can be tough, especially for students with disabilities; however, when students know their rights and where to get help, the transition can be made a little easier. Some students, such as Elijah a high school senior from Jacksonville, Florida, learn the importance of advocating for themselves and their needs for accommodations while still in high school. Here is his story and his wish for all students with disabilities.

A student’s ability to advocate for himself is important to succeed at the college level. Every year, I have an opportunity to meet and work with a group of about 15 autistic college students from various backgrounds and ranging in age. Some of them are traditional college students, others are accessing college through a Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) program or a modified course of study. All of them say the same thing – it can be hard.

Part of my job at the Autistic Self Advocacy Network is to provide incoming students with training in self-advocacy through our Autism Campus Inclusion program and give them the tools and resources they need in order to effectively advocate for themselves and get the most out of their college experience.

Under the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973, colleges and universities are required to remove any barriers impeding the student, whether these are architectural, communication related, or transportation and to provide reasonable modifications to rules, policies, or practices. It is, however, the student’s responsibility to know his or her rights and how to advocate for appropriate accommodations. These accommodations could include:

  • Wearing noise-cancelling headphones in class,
  • Using laptops for note-taking
  • A place to doodle, fidget, pace, or sit on the floor in order to focus and learn.
  • Live in a single dorm room, even as a freshman if needed
  • A quiet testing space
  • Alternative formats of classroom materials, textbooks, and tests

In addition to getting the word out about self-advocacy, we’ve created resources such as Navigating College and Autism Campus Inclusion (ACI) to assist students with disabilities as they navigate through higher education.

Autistic and other students with disabilities will often face barriers from the day they set foot on campus. In order for these students to succeed in college, we say, self-advocacy is needed. You have to know your rights, have a plan for getting the accommodations and modifications that are appropriate and needed, and be prepared to face an array of challenges. However, by creating a community on campus and bringing students together to share their experiences we remind one another that self-advocacy is easiest when we know we aren’t alone.

The opinions expressed and materials contained in this blog are not an endorsement by the U.S Department of Education and herein do not necessarily reflect the position or policy of the United States Department of Education.