Rights,Wrongs,and Remedies for Inclusive Education for Students with Significant Support Needs: Professional Development,Research,and Policy Reform

What Went Wrong?

Of the dozens of examples we could provide of what went wrong, we will highlight three. First, there was pre-determination. School principals were consistently uninformed about IDEA (2004) and evidenced, by word and deed, a pre-determined decision to exclude students with significant support needs from their school or to place them in a segregated building or class often far from their neighborhood school. One principal stated at an individualized education program (IEP) meeting that he would never have agreed for the student to enroll in his school if he had known that the student had cerebral palsy. None of the other professionals at the meeting spoke up; the parents were aghast and hurt to the extent that they left the meeting; but the principal proceeded in running the meeting to develop the IEP with placement in a trailer at a different school without the parents’ participation.

Second, there was functional exclusion through discipline. An elementary student with autism missed instruction and was routinely placed in seclusion for up to an hour for spitting in his hand, on the floor, but rarely on a classmate or teacher. The spitting was characterized as an “assault.” The behavior specialist defended the use of seclusion as a research-based practice. The seclusion was traumatizing to the student who repeatedly pulled out clumps of his hair and had meltdowns, begging his parent to not make him go to school. Beyond this one tragic situation, there was a consistent absence of expertise on how to conduct functional behavior assessments (FBAs) and develop behavior intervention plans (BIPs). What was presented as formal exhibits in the hearings of a FBA often consisted of random crumpled papers with tally marks of students’ misbehavior, typically with no definitions of target behaviors, time allotments, antecedents, or setting events. In one instance, there were over 1,400 tallies of non-compliant behaviors with absolutely no derivation of meaning.

Third, parents who advocated for inclusion were told that their children would be required to make grade-level progress on academic standards in general education classes without modifications in the standards; if they were unsuccessful in grade-level achievement, they would automatically be transferred to separate special education programs for instruction in an alternate curriculum. They were told that their child could have accommodations to learn the same standard, but no standard could be modified in light of the child’s current level of performance or rate of progress.

What Are Remedies?

Significant reform of pre-service and in-service professional development is necessary. We recommend that pre-service programs within general and special education develop partnerships with LEAs to sponsor inclusive professional development schools (PDS). The PDS model combines research of faculties in higher education with the on-the-ground experiences of LEA faculties; members of each faculty strengthen the skills of the other while providing inclusive contexts for student internships and student teaching (Snow et al., 2016). Recent research by Elder (2019) revealed how a PDS faculty collaborated to remove structural barriers to advance inclusive education for six students with disabilities. We believe that a way forward is to develop PDS sites in which higher education faculty across education fields, with a focus here on faculty specializing in severe disability, have the opportunity—even the obligation—to consult onsite to prepare LEA principals, teachers, and related service providers to deliver research-based supplementary aids and services (academics, social-emotional, behavioral) in general education classrooms, monitor student progress, implement the least restrictive environment (LRE) requirement, and practice trusting family–professional partnership strategies.

We also urge special education faculty and doctoral students specializing in severe disability to make a long-term, multi-year advocacy commitment to a student with significant disabilities. The advocates’ goal would be to maximize opportunities for the student to be successful in general education classes, extra-curricular activities, and other school activities. Their advocacy would consist of activities such as developing a trusting partnership with the student and all IEP team members, attending IEP meetings, developing and implementing strengths-based non-discriminatory evaluations and appropriately ambitious IEPs (commanded by Endrew F. v. Douglas County School District RE-1 [Endrew F.], 2017; H. R. Turnbull et al., 2017), developing FBAs and BIPs that incorporate positive behavioral supports, and implementing progress monitoring on IEP goals and benchmarks.

What faculty and doctoral students will learn from and contribute to their “on the ground” participation in inclusive PDS sites and in their ongoing advocacy relationships will enable them to significantly enhance their own competence in fostering successful inclusive education. For accountability, the Office of Special Education Programs (OSEP) within the U.S. Department of Education should require all faculty receiving personnel development and/or leadership grants and all doctoral students receiving funding to engage in this 1:1 advocacy enterprise. Institutions of higher education should award faculty significant credit for this type of professional service, and doctoral students should receive independent study credit.

To place disability into a cultural context of hyper-sensitivity and to avoid bias against the traits of students with significant support needs, pre-service programs that focus in this area should require all students to have a course on the ethics of disability services and supports across the lifespan. This course should focus on the nature of bias (micro- and macro/system-wide bias), emphasize strategies to safeguard against bias, and promote practices that acknowledge and advance the dignity of students with disabilities (A. P. Turnbull et al., 2020).

What Went Wrong?

LEA staff consistently and totally failed to cite research for their practices in mediations and hearings. In fact, in one state, there was a requirement to implement two research-based interventions before removing a student from a general education setting. The school personnel reported that they provided 4 days of “small group instruction” and “preferential seating” as research-based interventions to justify their decision to abandon inclusive education in favor of segregation for a kindergarten student who had prospered in an inclusive pre-school.

Two of the weakest sections of IEP documents and meetings that we discovered relate to supplementary aids and services, as well as to progress monitoring. Students’ IEPs frequently stated that the reason for placement in segregated classes is that students “need supplementary aids and services”; the educators acknowledged those supports were unavailable in inclusive settings. At a recent IEP conference, the facilitator told a mother that if her son left the segregated program where he was getting support and returned to the fourth-grade classroom that he would have to get by with no support. In another instance, a mediation agreement stipulated co-teaching which resulted in the target student leaving his segregated classroom for 30 min per day to have one-to-one instruction from a teacher situated behind a cardboard partition in the back of a general education classroom on a topic unrelated to the instruction for the rest of the class.

Moreover, teachers consistently demonstrated that they do not know how to monitor a student’s progress. As was the case in behavioral charting, progress monitoring documents were often not linked to IEP goals and they were a mish-mash of tally marks that were uninterpretable. More significantly, it appeared to us that, with respect to progress monitoring, the teachers were seeking evidence to justify exclusion from general education settings; in this respect, they were conforming to principals’ pre-determined exclusion.

The current significant challenges with supplementary aids and services, as well as progress monitoring, are not just the fault of teachers. These areas, to date, are largely unexplored in the research literature, especially research related to students with significant support needs.

The absence of research utilization stands in sharp contrast to the fact that IDEA refers to research-based interventions (or other terms such as scientifically based interventions) 76 times; its implementing regulations refer to them 160 times. The U.S. Supreme Court holds that an appropriate education consists of a genuine opportunity to make progress; it entails challenging objectives and appropriately ambitious goals (Endrew F., 2017). This landmark decision places renewed emphasis on research-based interventions (H. R. Turnbull et al., 2017).

What Are Remedies?

Strategies to advance research-based interventions consist of at least the following:

What Went Wrong?

It is pushing a half-century since Congress enacted IDEA (2004) and Section 504 of the Rehabilitation Act (1973). It is 30 years since Congress enacted ADA (1990). As strong as these laws are, they are not strong enough or are not strongly enough implemented as demonstrated by the conclusion of Agran and colleagues (2020), as well as our on-the-ground experience that we have heretofore described.

What Are Remedies?

One step forward is to amend IDEA (2004). (The political judgment of when and how to do so is not our concern in this article.) We recommend that the reauthorization of IDEA

Another response is for the U.S. Department of Education and Department of Justice to attack system-wide patterns of discrimination in education by suing SEAs and LEAs under ADA (1990) and Section 504 of the Rehabilitation Act (1973) or, perhaps, state anti-discrimination or education-rights law. Similarly, these federal agencies may sue to recover from SEAs the IDEA (2004) federal funds that states have used in violation of IDEA provisions, particularly the LRE provisions. That is the approach that the Department of Education used last year, recovering $33 million from Texas because of its pattern and practice to segregate students with disabilities (Texas Education Agency v. United States Department of Education, 2018). It is noteworthy that reallocation can favor students with the most significant disabilities. Remedies also can result in a court appointing a special master to oversee court-ordered system-wide remedies other than repayment of illegally used federal funds.

Currently, ADA (1990) or Section 504 of the Rehabilitation Act (1973) allows a court to impose punitive damages on a SEA or LEA; a prevailing party may recover only actual damages, attorney fees, and costs. This limited remedy restores a party to its position before the litigation, but punitive damages do more than that. They increase a defendant’s financial pain: they punish at up to three times the actual damages (the restore-to-status quo damages). Congress may amend these statutes and even IDEA (2004) to allow a court to award those damages where the SEA’s or LEA’s violations are egregious, as, for example, where the agency has engaged in a long-standing pattern or practice of discrimination. The remedy involving those damages would have to command the defendant agency not to use federal or state funds designated for programs to pay the damages.

To address the scarcity of legal counsel, Congress should re-create the legal services initiatives of the “war on poverty” era. These publicly funded law firms entice lawyers to become disability-rights advocates, representing under- and un-served clients seeking redress against public agencies.

Congress also should amend IDEA (2004), ADA (1990), and Section 504 of the Rehabilitation Act (1973) by adding whistle-blower protections; these protect against retaliations by “blown” agencies. Likewise, state legislatures should enact these statutes. In two of the cases in which we were involved, an educator stepped forward to provide parents with inside damaging information, asking them not to reveal the information. The educators expressed fear they would lose their jobs.

Finally, states should cease treating disability discrimination as a matter of civil law. They should resort, instead, to criminal law remedies, conceptualizing discrimination as a violation of the state’s duty to protect a person from truly harmful behavior. For example, they should treat restraint, seclusion, unjustified discipline, use of corporal punishment or aversive interventions, and unwarranted segregation as crimes—as assaults and batteries or as denials of liberty.

Advocacy to protect students with disabilities in education is, of course, necessary but by no means sufficient. After all, education is only one part of their lives, as ADA (1990) and Section 504 of the Rehabilitation Act (1973) acknowledge. So, Congress should require states, as a condition of receiving any federal funding, particularly IDEA (2004) funds, to create cabinet-level task forces, staffed in part by persons with disabilities and their family members, that have a responsibility to study and make recommendations on how a state may improve its services to and eliminate discrimination within all those sectors from which persons with disabilities and their families benefit. Those sectors would include, without limitation, education, employment, housing, transportation, health, mental health, economic opportunity and support, recreation and leisure, communication, information technology, higher education, and adult and juvenile justice. To empower each sector, and all of them together, create the office of Inspector General within each state-level sector agency, empower the Inspector General to investigate and recommend sanctions and reform to the state’s governor and legislature and to local agencies, and require annual reports based on pre-determined standards to be filed by the Inspector General and to be made publicly accessible, including by technology.

IDEA (2004), ADA (1990), and Section 504 of the Rehabilitation Act (1973) proclaim that there are four national disability policy goals: equal opportunity, independent living, full participation, and economic self-sufficiency. These goals apply to all people with disabilities, including those with the most significant disabilities. Indeed, it is beyond time to enforce rights and overcome wrongs by using individual student-focused and system-wide remedies with a focus on strengthening professional development, conducting and disseminating research on inclusive practices, and reforming policy for stronger implementation and accountability.

We affirm the quote from Hale (1902): “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do (italics added by authors).” Many of the remedies we suggest require complex systems change; however, the remedy of developing a local advocacy relationship on behalf of a student with significant support needs moving from segregation to inclusion can be done by every member of TASH and beyond. We implore you to take action now through your own commitment to a student in your community to change the trajectory from segregated to inclusive education for students with significant support needs. We can honestly assert that our own learning over our combined 100 professional years has been extraordinarily enriched and informed by being “front and center” with students, families, and IEP teams.