Judy Heumann, Special Education’s History of Litigation, and the Continuing Fight:
Complacency and Defensiveness Still Stand in the Way of Students with Disabilities’ Rights
Last Sunday, I woke up early to prepare and leave for another two-week consultation trip to New Jersey and Michigan. Still thinking about a topic for my next Blog, I dialed into LinkedIn to peruse the feed. There, I saw an obituary and testimonials for the life and accomplishments of Judy Heumann—who passed away the day before (March 4, 2023).
Part of the press release—“The World Mourns the Passing of Judy Heumann, Disability Rights Activist”—announcing this sad loss stated:
Judith “Judy” Heumann—widely regarded as “the mother” of the disability rights movement—passed away in Washington, D.C. on the afternoon of March 4, 2023. Judy was at the forefront of major disability rights demonstrations, helped spearhead the passage of disability rights legislation, founded national and international disability advocacy organizations, held senior federal government positions, co-authored her memoir, Being Heumann, and its Young Adult version, Rolling Warrior, and was featured in the Oscar-nominated documentary film, Crip Camp: A Disability Revolution.
Born in 1947 in Philadelphia and raised in Brooklyn, New York to parents Ilse and Werner Heumann, Judy contracted polio at age two. Her doctor advised her parents to institutionalize her when it was clear that she would never be able to walk. “Institutionalization was the status quo in 1949,” she wrote. “Kids with disabilities were considered a hardship, economically and socially.” When Judy attempted to enter kindergarten, the principal blocked her family from entering the school, labeling her a “fire hazard.” However, her parents, particularly her mother, fought back and demanded that Judy have access to a classroom. Judy eventually was able to attend a special school, high school, Long Island University (from which she earned a B.A. in 1969), and the University of California, Berkeley, where she earned a Master’s in Public Health six years later.
In the 1970s, . . . the New York Board of Education refused to give Judy a teaching license because they feared she could not help evacuate students or herself in case of fire. She sued and went on to become the first teacher in the state to use a wheelchair. Continuing her fight for civil rights, Judy helped lead a protest that shut down traffic in Manhattan against Richard Nixon’s veto of the 1972 Rehabilitation Act, and she launched a 26-day sit-in at a federal building in San Francisco to get Section 504 of the revived Rehabilitation Act enforced.
Judy was instrumental in developing and implementing national disability rights legislation, including Section 504, the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities.
In 1993, Judy moved to Washington, D.C. to serve as the Assistant Secretary of the Office of Special Education and Rehabilitation Services (OSERS) in the Clinton Administration, a role she filled until 2001. From 2002-2006, she served as the first Advisor on Disability and Development at the World Bank. From 2010-2017, during the Obama Administration, she worked as the first Special Advisor for International Disability Rights at the U.S. State Department. She also was appointed as Washington, D.C.’s first Director for the Department on Disability Services.
“Some people say that what I did changed the world,” she wrote, “But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.”
I met Judy a few times briefly as part of my leadership work with the National Association of School Psychologists, and listened to many of her speeches when she was the Assistant Secretary of OSERS.
Judy was a true advocate. She used the experiences in her life to advocate for others. The supports and opportunities that she expected—representatively—for herself, she expected for all children and adults with disabilities.
Living (Some of) the History of Special Education-I
I started my graduate school training at Syracuse University in the Fall of 1976—one year before the implementation of our nation’s first federal special education law, Public Law 94-142 (The Education for All Handicapped Children Act)—now known as IDEA, the Individuals with Disabilities Education Act, 2004). While I was training to be a School Psychologist, our Program rightfully wanted us to be prepared in special education.
Syracuse University’s (SU) existing special education program was established in the late 1940s led by its first director, William Cruikshank. Significantly, this was the first university program in the country to offer a full range of degrees for teachers in special education—from a BA to a PhD.
Cruickshank was well known before coming to SU. He was a pioneer in the field of interdisciplinary special education, believing that teachers should not neglect or isolate students because of physical or mental disabilities.
His research frequently looked at the relationships between disabilities and social adjustment, often in school settings, and he wrote about the effect disabilities had on individuals and the community. Cruickshank also significantly impacted the emerging area of learning disabilities, and he left SU in 1967—although he returned to give guest lectures, a few of which I attended when I was there.
When I began my studies at SU, the College of Education was dominated by professors who continued the Special Education Division’s mission of supporting the disability rights community and students with disabilities.
Indeed, the Dean of the College in 1976 was Burt Blatt, a special education professor who helped establish the Center on Human Policy at SU, an institute dedicated to insuring the rights of individuals with disabilities. The Center’s staff (which included graduate students with funded assistantships) often threatened or took school districts and other agencies to court as they legally (before P.L. 94-142 was implemented in 1977) simply excluded students with disabilities from public education or public services, respectfully.
Burt (as everyone called him), wrote Christmas in Purgatory, a portrait of life in a mental institution, and he consulted continuously with federal and state agencies on different ways to support individuals with disabilities. Burt was famous for “finding” cases that the Center could advocate for by wandering the streets of downtown Syracuse at lunch time, talking with parents whose children with disabilities were playing in the neighborhoods because they were excluded by the school district as uneducable.
Burt attracted a slew of Syracuse University professors who were dedicated to “radical” (for its time) special education advocacy, research, and instruction. Indeed, the College of Education’s staff included:
- Doug Biklen, who wrote Let Our Children Go: An Organizing Manual for Advocates and Parents—published by the Center on Human Policy;
- Wolf Wolfensberger, who founded the Training Institute on Human Service Planning, Leadership and Change Agentry, was known for popularizing the principle of normalization in North America and developing the concept of social role valorization, and who was one of the most influential scholars in developmental disabilities in the 20th century; and
- Gunnar Dybwad, an internationally known lawyer and advocate, who reframed community- and family-based services for those with disabilities and cognitive impairments as a civil right, not a medical condition. Dybwad emphasized the importance of a broad range of programs and facilities to meet these individuals’ social and educational needs, and argued for the elimination of involuntary placements of people with intellectual disabilities into state facilities.
Dybwad was active in this latter area as he represented the Association of Retarded Citizens (The Arc) in the 1950s as it worked to "liberate people" from custodial institutions. He also played a major role in encouraging the 1972 Pennsylvania Association for Retarded Children (PARC) to file disability rights litigation in federal court—successfully securing the right for these children with disabilities to receive a free public education.
While at SU, I was privileged to take courses with both Biklen (on Advocacy) and Dybwad (on Special Education Law).
Remembering (Some of) the History of Special Education-II
As alluded to above, before the controversial P.L. 94-142 was passed in 1975 (and before the passage of Section 504 of the Rehabilitation Act of 1973), students with disabilities (and all individuals with disabilities, respectfully) had no nationally-secured right to a free and appropriate education (FAPE) in the least restrictive environment (LRE) with due process as needed.
These rights were largely secured (a) through litigation in the court system, and (b) by brave advocates—like Judy Heumann, Burt Blatt, Gunnar Dybwad, and others—who stood up against all odds.
Indeed, prompted by the advocates, many of the foundational rights for P.L. 94-142 were based on different state, Federal, or Supreme Court decisions—with these courts saying, in essence, to Congress. . . “get this done.”
- The initial anchor for the subsequent court decisions was Brown v. Board of Education (1954) where African-American school children from four states argued that segregated public schools were inherently unequal and deprived them of equal protection of the laws. Indeed, the Supreme Court found that these children had the right to equal educational opportunities, stating that segregated schools “have no place in the field of public education.”
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- Testing and reinforcing the Brown decision, Hobson v. Hansen (1967) was a federal court case filed by civil rights activist Julius W. Hobson against Superintendent Carl F. Hansen and the District of Columbia's (DC) Board of Education. Hobson asserted that the DC Public Schools discriminated against Black and poor students relative to their right to the same (i.e., equal) educational opportunities received by White and affluent students. He asked the federal court to address questions related to the segregation of the DC’s schools, its use of academic testing and ability grouping, and its disproportionate assignment of minority students to lower-ability tracks where they received lower quality instruction.
Ultimately, Federal Judge Wright ruled that the DC Public School’s tracking system needed to be eliminated as it (a) was rigid, (b) based on culturally-biased tests, (c) resulted in academic tracks built on race and socio-economic status rather than ability and, therefore, (d) was unconstitutional and violated the equal educational opportunity provisions in the 14th Amendment to the U.S. Constitution.
Wright further noted that the students in the lowest tracks received substantially different and inferior educational opportunities, and he ordered the integration of teachers and the abolition of optional attendance zones. Wright’s decision finally stated that ability grouping, in and of itself, was not unconstitutional, and that leaders in the DC Public Schools could not be cited for discriminatory intent.
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After Brown and Hobson v. Hansen, the most-notable special education court decisions in the early 1970s were:
- Diana v. (California) Board of Education (1970)
This case was filed on behalf of a group of Spanish-speaking students who were inappropriately assigned to classes for the cognitively impaired based on assessments by monolingual school psychologists who tested these students in English and used these data to place students in special education classes. The case, filed in 1969, was settled out of court in 1970 where it was stipulated that linguistically different students must be tested in their primary language as well as English.
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- Pennsylvania Association for Retarded Children v. Commonwealth of Pennsylvania (1972)
Encouraged (as above) by Gunnar Dybwad and tried by lawyer Thomas Gilhool, this case was filed on behalf of fourteen families that had children with intellectual disabilities. These students could not attend public schools based on state laws that allowed schools to deny them access if they had not reached an average intellectual mental age of five by the time they began first grade.
The case was eventually settled following the testimony of expert witnesses (including Burt Blatt from Syracuse University) and the District Court’s approval of the consent decree. This decree held that the State had to guarantee a free public education to all children with intellectual disabilities ages 6 to 21—regardless of the degree of their impairment or associated disabilities, and that all educational placement decisions needed to include a process of parental participation and a means to resolve disputes.
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- Mills v. (DC) Board of Education, District of Columbia (1972)
The Mills case extended the PARC decision as it established the constitutional right of children with any disability to a public education regardless of their functional level.
This class action suit involved Peter Mills, a twelve-year old boy and ward of the state, and six other children (from eight to sixteen years old) with different disabilities including epilepsy, behavioral disorders, and cognitive impairments. These students were suspended, expelled, or excluded from DC’s public schools primarily due to the high cost of educating these children.
The Judge ruled in favor of the students, finding that they were expelled from the District without due process, and that they were entitled to an education regardless of the costs of their needed accommodations.
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- Lau v. Nichols (1974)
This case, tried in the U.S. Supreme Court, confirmed that the San Francisco Unified School District was violating of the 14th Amendment to the U.S. Constitution and Title VI of the Civil Rights Act of 1964, and was required to provide supplemental language instruction for students with Limited English Proficiency (or English as a Second Language).
Lau and approximately 3,000 students of Chinese descent attending the District were not proficient in English, only 1,000 of them were receiving a supplemental English language course taught exclusively in English, and many were placed either into special education classes or they were forced to stay in the same grade level for years.
In its unanimous ruling on this class action lawsuit, the U.S. Supreme Court noted that "there is not equality in treatment merely by providing students with the same facilities, textbooks, teachers, and curriculum; for students who do not understand English are effectively foreclosed from a meaningful education."
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After the PARC and Mills decisions, the U.S. Congress launched an investigation into the status of children with disabilities, finding that millions of children were not receiving an appropriate education.
Recognizing that many of these children had the potential to be independent, productive, contributing citizens with the “appropriate” educational opportunities and supports, Congress began—in 1972—to introduce new legislative bills. These, ultimately, were integrated into P.L. 94-142 which was passed and formally signed into law by President Gerald Ford on November 29, 1975.
Why Special Education History is Important to Those Working with Today’s Students with Disabilities
Relative to writing this commemorative (for Judy Heumann) Blog, there is a method to my madness.
I am concerned that many contemporary administrators, general education teachers, related services professionals (school psychologists, counselors, social workers) and, indeed, special education teachers do not know and may not appreciate the history of special education advocacy and litigation detailed above.
And in not knowing this history, they do not understand, and sometimes take it personally, when—for example—parents, advocates, and students with disabilities themselves fight against the still-existing education and special education injustices that are rampant across our country.
But beyond not understanding, some of these educators defensively resist, disparage, and even disenfranchise these parents, advocates, and students. . . clinging to the unfounded beliefs and inappropriate practices grounding these injustices. . . and closing their minds to new and/or convincing research-to-practice that invalidates their approaches.
Indeed, some of the continuing injustices in special education include the following:
- The disproportionate office discipline referrals of students with disabilities (SWD), as well as the disproportionate number of suspensions and expulsions. . . in the absence of effective multi-tiered interventions implemented by well-trained special education and related professionals.
- The excessive use of seclusions, restraints, and (where still allowed) corporal punishments of SWDs. . . once again, in the absence of effective multi-tiered services and supports.
- The singular promotion, by the federal and many state special education departments, of two frameworks, Positive Behavioral Interventions and Supports (PBIS), and Response-to-Intervention/Multi-tiered Systems of Support (RtI/MTSS), that have never been objectively validated relative to their ability to demonstrate sustained academic and social, emotional, and behavioral outcomes for preschool through high school students with different intensities of different disabilities in different geographic and demographic settings.
- The failure to review, analyze, and objectively evaluate the current and historical facts and status of students with complex special education needs using a data-based problem-solving method that links intervention to sound root cause analysis processes.
- The absence (and, sometimes, denial) of a continuum of services, supports, and interventions—including their delivery in well-staffed and resourced self-contained, day treatment, and residential centers—for students with social, emotional, behavioral, and mental health challenges. . . in the context of the archaic, almost 20-year-old “emotionally disturbed” definition in the Individuals with Disabilities Education Act (IDEA, 2004) that still is the “law of the land.”
- The lack of training and use of assistive supports and specific, strategically-chosen accommodations for students across the 13 disability areas outlined by IDEA.
- The development, implementation, and coordination of effective transition services and supports (required by IDEA starting at age 14), that should include career and technical education coursework and training for SWDs—and vocational training partnerships with states’ Office of Vocational Rehabilitation (or the equivalent), as appropriate.
A Personal Summary
Two Blogs ago, I talked about how the state departments of education, state departments of behavioral health services, and regional educational cooperative or resource centers in some states are ignoring their responsibilities to students with significant social, emotional, behavioral, and mental health disorders by not having enough well-resourced self-contained, day treatment, and residential treatment programs.
February 11, 2023. “Was a First Grade Virginia Teacher Shot Because Her Student was Denied Special Education Services? What School Administrators Face that State Departments of Education Ignore”
I connected these gaps to some of the school shootings that have involved these current or former students, and implored us to do better. . . and I further discussed these issues on a March 1, 2023 Education Talk Radio interview with Larry Jacobs (see below).
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In my last Blog, I discussed the negative effects when educators—who see inappropriate practices and injustices in their schools—become “selectively mute” while looking away.
February 25, 2023. “Solutions for Selectively Mute Students and Educators: The Long-Term Adverse Educational Effects When Inappropriate Behavior is Ignored”
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In response to the first Blog, I had a colleague from one of those state regional cooperatives (that are mandated and funded to help the districts provide the continuum of services for all students with disabilities) contact me asking for a Zoom conference call.
In my response—which agreed to the request, I told the individual that I wanted to know “the questions or issues that will be discussed during the call ahead of time.”
I also stated:
Related to this, if you have specific information that differs—factually—from anything in my Blog, I would like to have/see that information and documentation in advance (so that I can respond to it in an informed way during the call).
Parenthetically, while I am happy to listen to your concerns, if the purpose of the call is largely to express displeasure with the Blog, know that the Blog was written by me. . . as a "generic national expert and public servant." If we are going to meet, I want to be respectful of everyone's time, give you and your colleagues an opportunity to share your concerns, but not get into unneeded discussions that are not directed toward more effective services to students and their families, and staff, schools, and districts.
The individual followed-up with a second e-mail where s/he attempted to cite law and statute so as to defend his/her agency’s service delivery gaps—especially for students with significant social, emotional, behavioral, and mental health needs.
While I addressed (and attempted to refute) all of the provided information point-by-point, here was my representative response:
As advocates for children and adolescents, how does your (cooperative) staff feel when the only thing a district can do to protect its students (including the student with disabilities) is to put a student into Homebound because the appropriate educational program that they need is unavailable?
And how do you all feel when a District only provides the lowest, legally-required educational services of two hours per week to that student. . . relative to that student's learning, progress, and preparation for their short-term (e.g., successful reintegration into the district) and long-term (e.g., employability) future?
Another perspective . . . might be important to think about relative to this issue. If your (cooperative/regional resource center) were to be sued in a class action suit by parents with behaviorally challenging students who are not receiving the services and supports legally due to them, how would (it) fare in court?
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As noted above, when educators do not understand that advocacy and litigation were the foundations of our current special education laws and statutes, they sometimes become defensive about their own practices and responsibilities, or inflexible regarding their objectivity and openness to change.
Some then attempt to “hide behind the law” by demonstrating assiduously that they are adhering to it. And some do not even know that they are doing this.
Judy Heumann did not hide behind the law.
She helped to make the law, while acknowledging its flaws and limitations.
Judy did not let her physical limitations define her. . . nor did she let others restrict her physically.
Judy was a national treasure. . . She was a giant.
My three favorite “Judy” quotes are:
The truth is, the status quo loves to say no. It is the easiest thing in the world to say no, especially in the world of business and finance. But for the first time we were discussing civil rights, and no other civil rights issue has ever been questioned because of the cost.
Our anger was a fury sparked by profound injustices. Wrongs that deserved ire. And with that rage we ripped a hole in the status quo.
Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.
May her memory be a blessing.