As you read this, more than likely you are taking something very significant for granted: you can read. I can remember only one or two occasions in my adult life when I experienced the almost paralyzing feeling of being unable to decipher and understand the simplest text. That feeling came most recently in a supermarket in another country where all of the labels were in a different language and almost none had pictures on them. I was frustrated, almost to the point of tears, that I could not read the labels and find what to buy.
For many of my clients, this feeling is not so unfamiliar. My clients are children with learning disabilities. Broadly speaking, “learning disability” is a neurological condition that affects an individual’s ability to take in and put out information. “Learning disability” is an umbrella term with a variety of subdiagnoses including dyslexia, dyscalculia, dysgraphia, nonverbal learning disabilities, and auditory and visual processing disabilities.
Across Chicago, nearly 28,000 students have been identified as having a learning disability. Students with learning disabilities make up more than half of all students with any type of disability in the Chicago Public Schools. Around 90 percent of students with learning disabilities in the Chicago Public Schools are either African American or Latino. Under federal law, these students are entitled to specialized educational services to meet their individual needs.
Intersections in Special Education
Working with students with learning disabilities (and in special education law more broadly) is an interesting intersection of three fields: health care, education, and civil rights. As such, special education lawyers must become literate in all three fields. From a health care perspective, working with students with learning disabilities requires understanding diagnostic testing typically conducted by psychologists or neuropsychologists. Such tests can include intelligence quotient, basic phonics skills, math computation, and visual-motor integration. From an education perspective, special education attorneys must understand pedagogy, effective methodologies for teaching unique students, and, on occasion, best educational practices. And, as in other areas of civil rights, the attorney must understand what to be excluded and disenfranchised means and the legal tools available to beat back discrimination.
Helping students with learning disabilities, however, typically features another set of intersections: poverty, race, disability, and age. Students with disabilities are likely the most vulnerable group in our society. In many instances they come from poor families who lack the resources to obtain proper diagnoses or educational services (such as tutoring or counseling). Likewise, a number of people with disabilities are minorities. People from minority communities often face additional barriers to receiving adequate help as a result of complex problems from racism to more simple problems such as a language barrier. Moreover, by nature of their disabilities, some people with disabilities have difficulty advocating for themselves. For example, a person’s learning disability may affect reading and the ability to understand a pamphlet about rights. If all this were not enough, my clients are still children, too young for us to expect them to advocate for themselves.
The Legal Framework
Education in the United States is governed by a network of laws from the federal level all the way down to our local school districts. Special education is primarily facilitated through the federal Individuals with Disabilities Education Act (IDEA). Each state has passed implementing laws and regulations consistent with the IDEA. Other federal laws, such as Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA) Amendments Act help ensure access and fair treatment for students with disabilities.
While the passage of the Education for All Handicapped Children Act and the subsequent IDEA were no doubt triumphs, these statutes failed to solve all the challenges associated with educating students with disabilities and even created new or unforeseen problems. The federal government does not adequately fund state and local governments to provide special education services. The U.S. Supreme Court interpreted the IDEA narrowly so that school districts need only give access to students with disabilities and a basic floor of opportunity. Even well-intentioned educators seem overwhelmed by the number of students with disabilities and the complexity of their needs. At times the major goals of special education—to empower people with disabilities and ensure that they will become self-sufficient and productive—do not seem much closer than they were when the law was first passed.
Proponents of equal rights for students with disabilities must choose which problems to attack and what strategies will be most effective. Systemic litigation is important because it can fix major problems such as segregating students with disabilities into separate classrooms and illegal efforts to keep students with disabilities out of charter schools. Individual representation, however, allows advocates the opportunity to see how special education operates on the ground level and to advocate on behalf of a particular student as many times as necessary until the services appropriate for the student’s unique learning abilities are in place. Despite the challenge of having to fix the same discriminatory policy as it is applied to several individual students, each school meeting for one student offers the opportunity to teach others about the law so that they know what it requires of them the next time the same situation presents itself.
Designing a Project
I work at Equip for Equality, a federally mandated, statewide disability rights agency in Illinois. In its brief existence, the Special Education Clinic at our agency has designed a three-pronged approach to assisting families of students with disabilities. I have applied and expanded it in my work with students with learning disabilities. This approach consists of community outreach, self-advocacy assistance, and direct representation.
Meeting Clients Where They Are. Contrary to what might be expected, people in need of legal assistance do not always search far and wide for help. Some of them may not even recognize that they have a problem requiring a lawyer’s assistance. Others know that a lawyer can help but do not know what agencies or institutions to contact. For this reason, we disability rights advocates should, as much as possible, seek out clients rather than waiting for them to find us.
Meeting clients where they are means actively seeking them out in the community and thinking about all the organizations and institutions with which they already interact. For example, a colleague of mine, through his Latinos with Disabilities Advocacy Project, established partnerships with several local hospitals and medical clinics. Some of the doctors at these institutions simply refer patients to our agency. However, this attorney took the additional step of establishing office hours at specific sites within Chicago’s neighborhoods where he meets with parents and students when they see their doctors. By being out in the community, he removes some of the barriers that clients face when trying to secure legal help. Many of his clients do not even need to take down a number to call. Furthermore, this out-in-the-community approach assists in our advocacy because the doctors and other clinicians at these hospitals frequently give expert support and recommendations, bolstering our arguments for specific services in school.
In my own project, I have taken steps to partner with community agencies that offer after-school support to children. Community agencies that conduct after-school tutoring are already attracting neighborhood people who are seeking academic support. While not every student attending an after-school reading or math program may have a learning disability, many do, and these agencies are perfect for learning about new clients’ concerns and offering guidance about legal solutions to their special education challenges.
I try to find specific types of clients. Due to the nature and geographic scope of my project, I target my outreach to the intersections described above: poorer communities, minority communities, and children. I seek out children who have not yet been found eligible for learning disability services and students in need of the most intensive remediation. Students not yet eligible for learning disability services are usually young, and beginning special education support may create a slight change in their trajectory; this may produce a big payoff years later. Likewise, when I work with students in need of intense interventions, I recognize that years of legal violations and improper education have already occurred, but I may be able to help reverse the course even at a late stage.
Information and Empowerment. Another major focus of our agency and my project is ensuring that parents of students with learning disabilities can advocate for themselves. This approach is born out of recognizing that, first, people with disabilities must be empowered and, second, try as we might, we cannot directly represent every student.
In passing the IDEA, Congress gave parents and students both procedural and substantive rights. Parents were meant to be capable of participating in an “individualized education program” meeting in which their child’s special education services and supports are determined and formalized in a document. Learning these rights, however, is no easy task. In fact, one of the rights is that parents be given a list of their rights. Having read what schools typically give my clients, I know that these “procedural safeguards” booklets are too complex for many people to understand. As such, giving this information to parents is a mere formality, and few schools or individualized education program teams take the time to explain to parents their rights, let alone do so in an understandable manner.
My job then is to explain these rights in a “parent-friendly” way. I spend much of my day answering parents’ questions and explaining what the law says about their concerns. Furthermore, I conduct training in the community for parents about special education law and advocacy strategies for making stronger, more effective arguments to their children’s individualized education program teams. I often give parents fact sheets that they can understand and consult along with templates or sample letters (such as requests for student school records or individualized education program meetings). Putting information in their hands demonstrates to them that they can be active participants in the special education process just as the law intended.
Even early in my project, this strategy has been effective. In one case, a parent complained that she could not even get the individualized education program team to agree to a meeting. I gave her a template in which she outlined her concerns in detail, cited the law, and reminded the team that it was required to respond to her request within ten days. When she visited the school two days later, a school staff member came to greet her, shook her hand, and sat with her to schedule a meeting. The mother reported back to me that she finally felt that the members of the individualized education program team were giving her respect. In another case, a mother told me that a school refused to consider an outside evaluation. I helped her request an individualized education program meeting, and when the meeting began she gave the case manager the citation to the section of the law requiring the team to consider private evaluations. The mother then handed every team member a copy of the evaluation, and the team engaged in a three-hour discussion of her child’s doctor’s recommendations.
(Somewhat) Traditional Lawyering. Parents often seek our direct representation. Deciding to give direct representation or self-advocacy assistance is not easy. As proponents of empowerment, we believe that parents can succeed on their own, but we also recognize that success is too often not the result. I try to be sensitive to the realities my clients face. Many clients work multiple jobs and have limited time to educate themselves about the law, let alone review school records about their children. Some parents lack the resources to accomplish their goals (such as paying the fees to get a copy of their children’s records in the first place). Other parents may have difficulty advocating for their children because they themselves have a disability. And, for some parents, their children’s education is too emotional, and they have not been able to negotiate effectively with the individualized education program team a plan to meet their children’s learning needs. Being cognizant of these factors helps us know when clients need us to step in.
Taking on a case often requires a lot of nonlegal research. Sometimes I have to learn about diagnostic tests or the particulars of a specific disability. Moreover, because the law demands that special education be individualized, every case is inherently different. Even two students with dyslexia have different skill deficits. Student A may need five hundred minutes per week of specialized reading instruction and tests to be read orally to him, while Student B may need half as much instructional time and breaks during tests. There are no cookie-cutter cases in the world of learning disabilities or special education.
Advocacy in Action
Our office recently represented a seventh grader, Cid, a Latino from Chicago’s South Side. Over the summer Cid’s parents visited a psychologist at a local hospital. His parents were concerned because Cid appeared to be struggling with reading and writing and had poor handwriting. While his parents had been concerned about these deficits for some time and had raised them with the individualized education program team, they were unable to obtain the services that Cid needed. The psychologist conducted a preliminary evaluation of Cid and referred him for other evaluations from doctors and specialists within the hospital.
Cid’s psychologist is a doctor with whom our agency has formed a partnership. Recognizing that Cid would need disability-related interventions both inside and outside school, the doctor asked permission from Cid’s parents to forward information about Cid to our agency. Once we received the evaluation from the doctor, my colleague asked me to assist in evaluating the case. I reviewed the private evaluations but felt that we needed more information about Cid’s progress in school. We contacted the parents, obtained signed consents, and submitted a request to Cid’s school for records under the Illinois Student Records Act.
Our investigation of the case identified a number of major concerns. Cid was reading and writing far below grade level. He had trouble with decoding unfamiliar words (i.e., identifying the sounds of letters and blending them together in order to read), had related problems in spelling, and wrote very simple sentences that evidenced a lack of grade-level vocabulary, sentence structure, and grammatical conventions. Cid’s individualized education program did not seem well tailored to make up for these deficits. His program lacked goals to deal with each of his skill deficits. Some of his individualized education services stated that he would work at his age and grade level despite being years behind his peers. Some of his previous individualized education programs contained very similar goals and showed either that he was not making progress from year to year or that the team was not bothering to consider his changing needs.
We agreed to represent Cid’s parents and scheduled an individualized education program meeting. Our first meeting had all the tension of when attorneys are involved. The teachers knew that we would not be attending the meeting if we believed the school was appropriately attending to Cid’s disability. However, we kept the discussion focused on Cid and presented information from the private reports. The school considered these outside reports but felt that they needed more information. We agreed to initiate a “domains conference” in which we determined what types of evaluations would offer a clearer picture of Cid’s needs. Included in our recommendation was a request for “multisensory reading screening,” which would help us determine whether a specific, research-based instructional approach would be appropriate for Cid. To our dismay, some of Cid’s teachers were not familiar with multisensory reading instruction, and others believed that it was an intervention appropriate only for students with autism. Following the meeting, our clients commented about how different it was to see a very detailed and specific conversation about Cid’s skills and a focus on ensuring that each decision was explained to them.
Over the next month we waited for the school to complete its evaluations. Before our meeting, we discussed different strategies with Cid’s parents and decided that rather than focusing on the staff’s past failings and making the staff more defensive, we would focus on future services for Cid. According to Cid’s parents, prior meetings focused on what happened in the past, and discussions usually devolved into accusations and were minimally productive. We spoke with the special education coordinator at the school to ensure that we would receive copies of the evaluations far in advance of the next meeting and thus review them with Cid’s parents and prepare. Cid’s parents commented that they had never obtained evaluations before a meeting and had struggled to skim through them during meetings.
At our second meeting, the school reviewed its new evaluations, and we discussed specific accommodations and services for Cid. The reading evaluation revealed that Cid struggled with “vowel diagraphs,” “controlled-r,” and “diphthongs”—elements of reading that few parents, if any, could be expected to know—and that he was functioning as a second grader in reading comprehension and needed help in recognizing stated detail in stories and simple inference questions. The evaluation informed us that Cid incorrectly placed vowels while spelling and that he had not yet mastered when to capitalize words. We asked each specialist about how to resolve these deficits and made sure that they had a hand in drafting Cid’s goal statements for the next year. The school revealed that, although it agreed to teach Cid by using the multisensory instructional approach, it did not have a staff member appropriately trained to do so. Through our continued advocacy, we coordinated with the appropriate school district official to ensure that Cid’s teacher attended a training just a few weeks later. That training was crucial for Cid but may also end up benefiting other students at his school.
Cid’s parents later explained that they never knew what questions to ask, and even if they had known, they were certain they would not have received the responses that we had. Furthermore, while they were never prepared to proceed to litigation if their efforts at the individualized education program meetings failed, we would have been. A few weeks ago Cid’s parents called to update us about his progress and to tell us about a new problem to be raised at an upcoming meeting. We asked if they needed us to attend the meeting or assist in preparing, but Cid’s parents told us that after seeing our advocacy in action they felt they could meet with the school without our involvement.