NAMI's Position (summarized from the NAMI Policy Platform)
NAMI believes that children and adolescents with brain disorders have the right to thrive in nurturing environments and deserve to have early diagnoses with appropriate treatment and services targeted to their specific needs. NAMI urges parents and caregivers to seek information about treatment and services, including special education for their child who may be eligible because of a serious emotional disorder (SED), a developmental disability (DD) or a brain disorder. NAMI calls for strong links between state and local mental health systems, public and private schools and juvenile justice systems. NAMI declares that under no circumstances shall families be coerced or forced to relinquish custody of their children with brain disorders to obtain care, treatment or education. NAMI urges the development of smooth processes for the transition from adolescent to adult education and integrated community services and the full use of vocational programs that are appropriate for the age group. NAMI calls for the immediate training of professionals specializing in treating and educating children and adolescents with brain disorders in scientifically based knowledge about these disorders.
IDEA is the federal special education law that guarantees to all children with disabilities a free, appropriate public education (FAPE).1 The purpose of IDEA is to ensure that children and adolescents with disabilities, including mental or emotional disorders, have an equal opportunity to fully participate in the educational system and to protect the rights of families to challenge school districts when they fail to provide them with that basic opportunity. NAMI greatly values the safeguards and services that IDEA is designed to provide to children and adolescents with mental illnesses. Unfortunately, the law has not been effectively implemented or enforced in many states across the country.
IDEA is divided into four sections, Parts A through D, which cover the following areas of the law:
- Part A - General Provisions, Definitions and Other Issues (includes congressional findings and purpose);
- Part B - Assistance for Education of All Children with Disabilities (includes funding, state plans, evaluations, eligibility, due process, and discipline);
- Part C - Infants and Toddlers with Disabilities (programs targeted at preschool children and their families);
- Part D - National Activities to Improve Education of Children with Disabilities (focuses on the need to improve special education programs, train school personnel, disseminate information, support research and apply research findings to education).
The Individuals with Disabilities Education Act (IDEA) is up for Congressional reauthorization in 2002. Although only Parts C and D are subject to reauthorization because otherwise they will expire on September 30, 2002, Congress and the Administration are undertaking a comprehensive review of the entire special education law. There is some speculation that Congress will not complete the reauthorization of IDEA in 2002 because it is an election year.
Background on IDEA Reauthorization
In October, 2001, President Bush established a Commission on Excellence in Special Education (Commission) that is charged with collecting information and studying issues related to federal, state and local special education programs, with the goal of recommending policies for improving the educational performance of students with disabilities. The Commission is scheduled to release its report and recommendations of changes to IDEA on July 1, 2002.
Many in the disability advocacy community have expressed concern with President Bush's choice of commission members because several of them authored chapters in a controversial Fordham Foundation/Progressive Policy Institute report entitled Rethinking Special Education for a New Century (May, 2001). This controversial report proposes dramatic reforms of IDEA that if implemented could pose significant harm to youth with mental illnesses. Mental health advocates fear that several sections of the Rethinking report may be a foreshadowing of what we can expect to see from the Commission report. The Commission's report is expected to be very influential in the President's involvement in the reauthorization of IDEA.
NAMI's Advocacy Goals for IDEA and Strategies for the Reauthorization
- NAMI supports protecting the existing eligibility of students with mental illnesses, particularly those served under the category of emotional disturbances.
In order for a child or adolescent to be eligible for special education services under IDEA, they must meet a two-part test for eligibility. The relevant language in the law for children and adolescents with mental illnesses requires first that a child have an "emotional disturbance" or "other health impairment" (which includes ADD and ADHD) and second -- it must be shown that the child needs special education and related services to receive an appropriate education.
The IDEA regulations define "emotional disturbance" as follows:
The term means a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child's educational performance:
- An inability to learn that cannot be explained by intellectual, sensory, or health factors.
- An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.
- Inappropriate types of behavior or feelings under normal circumstances.
- A general pervasive mood of unhappiness or depression.
- A tendency to develop physical symptoms or fears associated with personal or school problems. The term includes schizophrenia. The term does not apply to children who are socially maladjusted, unless it is determined that they have an emotional disturbance.
NAMI supports the existing eligibility criteria despite the fact that the language included in the definition for "emotional disturbance" does not adequately reflect the scientific advances and our current understanding of early-onset mental illnesses. The definition included in the law and regulations is broad enough to ensure that children and adolescents with mental illnesses, who need it, will be eligible for special education services. Moreover, there is concern that any attempt to amend the existing statutory language might result in a narrowing of the eligibility definitions that would adversely affect youth with mental illnesses.
- NAMI calls for improved implementation and enforcement of IDEA at the local, state and federal levels.
IDEA is a well-written law that conceptually should address the education needs of students with mental illnesses. Unfortunately, there is great variability in how well IDEA has been implemented in school districts across the country and there seems to be consensus that the law is not being enforced by those charged with ensuring its enforcement. The special education system is not addressing the needs of many youth with mental illnesses across the country.
- Congress should provide for the full funding of IDEA.
Part B of IDEA states that Congress may contribute up to 40% of the average per pupil expenditure for each special education student. Congress has never funded more than 15% for special education. Full funding proposals were introduced as amendments to the Elementary Secondary Education Act (ESEA) but were not included in the final bill signed by the President. One of the amendments under consideration was mandatory full federal funding of IDEA that would have required the federal government to reimburse schools 40% for special education programs. NAMI will continue to advocate for the mandatory full funding of IDEA during the reauthorization in 2002 and in future education legislation to ensure that Congress makes good on its promise to adequately fund special education.
- Schools must improve training and professional development to ensure that school personnel (including general and special education teachers and others) understand early onset mental illnesses.
School personnel are often poorly informed about early-onset mental illnesses. This is not surprising given that many teachers were trained in the years before the reality of childhood onset mental illnesses was accepted by the scientific and educational communities. However, now that the idea that children are somehow immune from serious mental illness such as major depression, bipolar disorder, and anxiety disorder has been dispelled, it is time to dedicate resources to train and, when necessary, retrain educators in this important area. It is hard to imagine how school personnel can be expected to address the education needs of children with mental illnesses without adequate tools and without additional training. We urge that there be greater investment in school-based training so that teachers and all school personnel can recognize the signs and symptoms of mental illness.
- Local, state and federal agencies must enforce the IDEA regulations that require transition planning and transition services to be included in the Individualized Education Program (IEP) for all students.
- Schools must increase access to related services required by children and adolescents with mental illnesses and their families that allow these youth to receive an appropriate education.
The statutory definition of "related services" broadly encompasses those supportive services that may be required to assist a child with a disability to benefit from special education. The term "related services" includes transportation, psychological services, social work services, counseling services (including parent counseling and training to assist parents in understanding the special needs of their child) and other services that may be necessary to assist a child with a disability to benefit from special education. Unfortunately, many families report that school districts restrict the related services that are available to students with mental illnesses.
- NAMI supports the existing IDEA discipline provisions that prohibit schools from unnecessarily excluding students with mental illnesses from the classroom.
NAMI believes that schools must be safe and orderly to ensure the best learning environment for all students. We also understand the critical need for school districts to have the authority to discipline students to ensure safe schools and an environment conducive to learning for all students. Nonetheless, students should not be denied access to all education and related services because of behaviors caused by the symptoms of their illnesses.
The 1997 Individuals with Disabilities Education Act (IDEA) disciplinary provision amendments and ensuing regulations strike the appropriate balance between ensuring that school administrators can appropriately address disciplinary behaviors and protecting students with disabilities from being unfairly excluded from the classroom. There is no need to change these amendments and regulations in any way.
- Promote the use of positive behavioral supports and other best-practice models (e.g. wrap around and multi-systemic therapies) to address the needs of youth with mental illnesses.
Positive behavioral support is an approach used to address the behaviors that children exhibit in school and to design effective environments to improve behavior. The development of positive behavioral interventions and plans are guided by a functional behavioral assessment that looks at problem behaviors and the events that predict occurrence, non-occurrence and maintenance of those behaviors. This assessment is a process for describing problem behavior, identifying environmental factors and setting events that predict the problem behavior, and guiding the development of effective and efficient behavior support plans. This has proven to be an effective and positive approach to discipline and intervention in the school districts that have used it.
Effective best-practice and positive interventions have been developed for use in schools to improve the classroom environment and increase the capacity for all students to learn. NAMI is pleased that the Department of Education, Office of Special Education Programs has embraced positive behavioral supports which have been shown in many classrooms to be an effective approach to discipline and intervention. Schools must continue to establish and implement research-based and effective programs that minimize the chance that children with mental illnesses will be removed from the classroom, prevent disruption by all students and help to address the unique education needs of children with mental illnesses.
- Ensure that states and local school districts have the resources for early identification and intervention to maximize the ability of students with mental illnesses to benefit from their education.
Public and private agencies and schools must work to eliminate barriers that prevent these systems from effectively developing innovative model programs that meet the needs of youth with mental illnesses and their families. These systems must accept the financial and service responsibility for meeting the needs of children and adolescents with mental illnesses and their families.
Our special education law is one of the most important civil rights laws ever written and the protections included in it are critically necessary to prevent schools from excluding children and adolescents with mental illnesses from our classrooms. With attention to adequate funding, positive behavioral supports, expanded training and education of school personnel, and the provisions of the existing IDEA law, we can successfully manage this challenge in a way that protects the right to education that all students enjoy.