Lessons and Limitations
Matt Cohen, J.D.*
In the 1950s and 1960s, the civil rights movement in the United States mounted challenges to discrimination on the basis of race through a combination of law suits in court and efforts to enact civil rights protections both nationally and in each state. As these activities led to increasing recognition of the rights of racial minorities, the disability community mobilized to seek similar protections for individuals with disabilities. Three key laws have provided protection for children and adults with AD/HD: Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act of 1975 and the Americans with Disabilities Act of 1990. However, as with the legal protections achieved by the African-American community, the legal protections secured on behalf of people with disabilities have been only a partial success.
The first important legal protection adopted on behalf of people with disabilities was Section 504 of the Rehabilitation Act of 1973. Section 504 prohibited discrimination on the basis of disability and required that individuals with disabilities be provided “reasonable accommodations” to enable them to participate equally in the programs covered by the law. However, Section 504 only applied to organizations or programs that received funding from the US government. This included state and local governments and institutions that received federal grants or contracts. For example, private colleges and universities that receive federal grants to support research or training programs are covered by Section 504. However, Section 504 did not provide protection for people with disabilities in most areas of life, such as housing, private employment, or participation in community organizations.
Section 504 provided protection to any person with a physical or mental impairment that substantially limited a major life activity. In addition, it also protects people with a history of disability, such as those that had a severe illness from which they have recovered. It also protected people regarded as having a disability, even if they didn’t actually have a condition that resulted in substantial impairment of a major life activity. For example, a person that is HIV positive, but does not have any symptoms might be subject to discrimination based on a perception that they were disabled, even though their condition was not actually limiting their day to day activities.
Under Section 504, people with AD/HD and other neurobiological disorders were entitled to protection, because thinking was regarded as a major life activity. However, many people, and many courts, were less willing to enforce civil rights protections on behalf of people with AD/HD and similar conditions, because they did not view these disabilities as being as easily diagnosed or as obvious as conditions such as blindness, deafness, retardation or physical impairments.
In the early seventies, a number of law suits challenged the failure of the US public educational system to provide equal education to children with disabilities. These law suits were based on requirement of the US Constitution that all people are entitled to equal protection of the law and can not be deprived of basic rights without “due process of law.” Due process includes the right to be informed of your rights, the right to participate in decisions about your life, and the right to have an impartial review of decisions by the government or government programs if you disagree with the decision, including the right to have an attorney represent you and to have an impartial judge review the government’s decisions. Two important court decisions ruled that children with disabilities have a right to receive an education, to have that education provide sufficient supports to allow the child to benefit from participation, to have the education provided in the least restrictive environment appropriate (with their peers without disabilities as much as possible), and to have their parents be allowed to participate in all decisions and to challenge the school’s decisions by means of an impartial due process hearing if the parents disagree with the school’s decisions.
As a result of these court decisions, the US Congress enacted a sweeping law requiring the provision of special education services to all identified children with disabilities within the public schools. The new law, now called the Individuals with Disabilities Education Act (IDEA) provided that the public schools must identify all children suspected of having disabilities, conduct thorough and multi-disciplinary evaluations of children suspected of having a disability, and provide all children determined to have disabilities a “free appropriate public education in the least restrictive environment.” In order to qualify for the protections of the law, the IDEA required that the child have meet the criteria of one of the thirteen categories of disability recognized by the law. However, AD/HD was not listed as one of the categories. For many years, there was confusion as to whether children with AD/HD were covered by the law.
In 1991, the US Government decided that AD/HD should be formally recognized as being covered by the IDEA, issuing a new policy that provided that children with AD/HD could be provided protection from discrimination in the public schools under Section 504. However, even more important, the Federal Government also determined that AD/HD could be covered under the IDEA category of Other Health Impairment, which was a broad eligibility category providing coverage for individuals with health impairments such as asthma, diabetes, epilepsy, and other medical disorders. Even with this new policy, because AD/HD had not been formally recognized within the law itself, many schools continued to exclude children with AD/HD from special education services. Finally, as a result of efforts by disability organizations representing children with AD/HD, such as Children and Adults with Attention Deficit/Hyperactivity Disorders (CHADD), the law was amended in 1999 to formally incorporate AD/HD within the Other Health Impaired Category. This has led to increased recognition of the right of children with AD/HD to receive appropriate services and accommodations from the public schools.
The protections of IDEA and Section 504 allow children with AD/HD to receive many extra supports while in school. These can include specialized instruction within their regular classes, participation in special classes where needed, help with organizational skills, extra time for homework and to complete tests, preferential seating in the class room, ability to take tests in a quiet room, supervision of the administration of medication at school, or even, for children with severe needs, the provision of a one to one adult aide to assist them in class (though this is a more difficult support to obtain). Children with AD/HD may also be eligible for the development of a Behavior Intervention Plan (BIP),that is intended to help them to learn positive and appropriate behavior and to set forth the therapeutic steps to be taken if they have behavioral difficulties. Although children with AD/HD are now able to receive many useful services and supports within the public schools, many schools remain skeptical of AD/HD as a disorder and/or unwilling to fully implement the requirements of the law for children with AD/HD. Parents continue to have to fight to assure that their children are appropriately evaluated, diagnosed and provide appropriate services and modifications.
The Americans with Disabilities Act of 1990 extended civil rights protections to people with disabilities in all areas of American life, including governmental services, employment and within private companies and institutions. The definitions of disability under the ADA were the same as those under Section 504. Unfortunately, there was opposition to the strength and breadth of this law in the courts. Many courts interpreted the law very narrowly, finding that many people with disabilities, particularly those with AD/HD and other “invisible” disabilities, did not qualify for the protection of the law. Of particular concern, the US Supreme Court held that if a person with a disability used a “mitigating measure,” or corrective device or aid to help them to compensate for their disability and that corrective measure allowed them to function in a more typical way, they were no longer entitled to the protection of the law. Use of stimulant medication by a person with AD/HD was an example of a mitigating measure that meant the person would no longer be protected. Thankfully, this bizarre and unjust ruling was recently overturned by the US Congress, which revised the law in 2008 to provide that mitigating measures did not preclude a person’s right to the protection of the ADA and other disability laws. In fact, the Congress expanded the definition of disability to make clear that a physical or mental impairment to include problems with thinking, concentrating or paying attention.
Under the ADA, adults with AD/HD are entitled to reasonable accommodations in employment, including things like quiet rooms, help with organization, and job reassignment to tasks that provide more structure or clear expectations. This law also provides more protection for individuals with AD/HD when they are taking admission tests for colleges, for help with organization and accommodations on tests while in college, and on tests to receive professional licenses.
The rights of people with AD/HD and other disabilities are now far stronger than they were 30 years ago. Much progress has been made in changing the attitudes of people in the community about disabilities in general and about AD/HD in particular. However, many people still are subject to overt or hidden bias or discrimination due to their disabilities. Even now, many people with AD/HD have difficulty getting the support they need from their families, friends and employers. The disability rights movement has achieved the successes that it has by organizing political support for passage of these and other laws at both the local and national level. The development of support groups to assist people with AD/HD also provides a natural way for people with AD/HD and their families to organize to bring the problems of discrimination and inadequate health care and educational services to the attention of the government. Alliances between people with AD/HD and the professionals who provide treatment to them are important in bringing about changes in societal attitudes and in changing the legal protections. As the attitudes shift, it is easier to obtain legal protection. At the same time, as legal protections are enacted, it forces more people to be aware of the needs and rights of people with AD/HD and other disabilities, to recognize all that they have to contribute to society, and to assist in providing them acceptance and legal protection. Efforts to change attitudes require sustained education of professionals, politicians, educators and the community. Efforts to change the laws require organized and sustained planning and unifying people concerned about these issues to obtain recognition from the government.
*Matthew Cohen is a disability rights and special education lawyer in Chicago, Illinois. He is the former national president of Children and Adults with Attention Deficit/Hyperactivity Disorder and a founding board member of the Council of Parents, Attorneys and Advocates, a disability rights advocacy group. He is lectures regularly throughout the United States and elsewhere on disability issues and writes frequently on these topics. He is the author of a new book, “A Guide to Special Education Advocacy – What Parents, Advocates and Clinicians Need to Know,” by Jessica Kingsley Press, 2009. He also has AD/HD and is the parent of a child with AD/HD.
A Spanish translation of this article appeared in the newsletter nº 23 issued by the Asociación Peruana de Déficit de Atención (APDA), on July 12, 2009.
Monahan & Cohen Attorneys at Law, 55 W. Monroe St., Suite 3700, Chicago, Il. 60603,
312-419-0252, email@example.com, www.monahan-cohen.com