National Alliance on Mental Illness
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(800) 950-NAMI; email@example.com
February 25, 2002
Re: Reauthorization of the Individuals with Disabilities Education Act (IDEA)
Dear Mr. Irving:
NAMI, the National Alliance for the Mentally Ill, with a nationwide grassroots membership of 220,000 persons directly affected by severe mental illness-respectfully submits the following comments in response to the request for comments on the reauthorization of the Individuals with Disabilities Education Act (IDEA), published in the Federal Register, January 10, 2002 (Volume 67, Number 7).
NAMI is the leading grassroots advocacy organization representing persons with serious brain disorders and their families. Through our 1,200 chapters and affiliates in all 50 states, we support education, outreach, advocacy and research on behalf of persons with serious brain disorders, including mental or emotional disorders affecting children.
NAMI appreciates the opportunity to submit comments on the reauthorization of IDEA and greatly values the safeguards and services it provides to children and adolescents with disabilities. The IDEA, as currently written is an effective law that ensures all children the right to a free appropriate public education. The law should remain intact and its existing provisions strengthened and enforced at the federal, state and local levels.
NAMI is deeply concerned with the research and information recently reported in the Surgeon General's 2001 report on children's mental health. According to the report, in the United States, 1 in 10 children and adolescents suffer from mental illness severe enough to cause impairment. Tragically, in any given year, fewer than 1 in 5 of these children receives needed treatment. The long-term consequences of untreated childhood mental or emotional disorders are staggering, in both human and fiscal terms. Suicide is the third leading cause of death in adolescents. (CDC, 1999) The evidence is strong that over 90% of children and adolescents who commit suicide have a mental disorder. (Surgeon General, 1999). Unlike the outdated notions concerning children's mental health, it is now well-recognized that mental or emotional disorders are not "just a stage" or simply a function of poor parenting or crowded classrooms, but are instead the result of a complex interplay of individual genetic, developmental, and physiological factors.
Families with children with mental or emotional disorders are suffering because of missed opportunities for early identification and the fragmentation of treatment services. NAMI strongly supports many of the identified goals and action steps of the Surgeon General's National Action Agenda for Children's Mental Health, several of which address the critical need for school-based early identification of mental or emotional disorders in children.
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. This participation is fundamentally necessary for these children to ultimately live independently and become productive members of society. Congress should act on mandatory full funding of the IDEA.
Although Part B of IDEA is permanent legislation with no requirement for reauthorization, the Federal Register notice states that the reauthorization process for Parts C and D provides an opportunity to carefully examine Part B as well. Therefore NAMI respectfully submits the following guiding principles for the reauthorization of the IDEA in order to protect children with mental or emotional disorders.
Protect the existing eligibility of students served under the category of emotional disturbances. Children and adolescents with mental or emotional disorders must be identified and guaranteed a free appropriate public education. Far too many children and adolescents with these disorders who qualify for special education services under IDEA are not being identified as eligible for services. Schools should be required to develop a screening, assessment and identification process to ensure that children with mental or emotional disorders are properly identified in the early school years, just as schools identify children with hearing and vision needs. (Surgeon General, 2001)
Some states have labeled the current "emotional disturbance" eligibility definition as problematic, based on its possible misinterpretation, stigma and a lack of common understanding about the nature of brain disorders (Forness, 1996 and Forness, 2000). Any change in the statutory or regulatory IDEA definition of "emotional disturbance" should be an adoption of the proposed emotional and behavioral disorders definition that appeared in the Federal Register on February 10, 1993, at p. 7938. The 1993 definition was developed through a collaborative process of several professional and parent groups and draws on a sound empirical base.
The eligibility of students with mental or emotional disorders must be protected in any amendments to IDEA and these children must be provided with special education services under IDEA. Families that are fortunate enough to receive an appropriate identification of a mental or emotional disorder and adequate services for their children in the special education program, often share their academic success stories with us. Tragically, it is more the exception than the rule. More frequently, the stories involve inappropriate denials of services or inadequate services.
Improve the enforcement of IDEA by local, state, and the federal governments. The Department of Education must ensure that state special education programs comply with the IDEA. To do this effectively, the Department must have both adequate data for monitoring IDEA implementation and the capacity to sanction states when necessary. Sanctions should be adequate to effectuate compliance with the law, predictable and applied equally to all states and territories, based on student outcomes. School district compliance with IDEA's due process requirements is also essential so parents can ensure timely accountability for their children's educational needs. Similarly, states must employ a system of accountability to ensure that local educational agencies comply with the law.
Improve training and professional development. School professionals, including classroom teachers should be trained to recognize early signs of mental or emotional disorders. (Surgeon General, 2001 - Forness recommendations) The majority of students with mental or emotional disorders spend a considerable amount of their school day, and for many - the entire school day, in general education settings. Thus, training about the needs of students with mental or emotional disorders must be directed at the general classroom teachers as well as special education teachers. High dropout rates among students with these disorders are correlated to shortages of qualified personnel. Classroom teachers must have in-service training to better understand mental and emotional disorders and the skills to effectively work with these students. The educational needs of these students depend on it and in-service training will help to ensure positive student outcomes.
IDEA regulations require that transition planning and transition services be included in the Individualized Education Program (IEP) for all students. The regulations require the IEP to include the needed transition services for the student. 34 CFR § 300.347(b)(1) & (b)(2). Helping students with mental or emotional disorders plan and prepare for transition involves providing the student with a coordinated set of services that will help him or her move from school-based services into the very different adult system. Unfortunately, families all too often express concern that effective transition planning did not occur or students were left out of the planning process. The lack of transition planning and effective youth involvement significantly impacts the likelihood that students with mental or emotional disorders will achieve success after leaving the school system.
Increasing access to related services is crucial to children with mental and emotional disorders. IDEA is very clear that school districts must provide related services needed by a child to benefit from special education. Despite the clear dictates of the law, there is often a lack of qualified professionals within the schools to provide critically needed related services for students with mental or emotional disorders. Frequently, school districts simply refuse to provide the related services necessary for a child to benefit from special education. Current research demonstrates that by providing the array of services required by children with mental or emotional disorders to benefit from special education, those students achieve superior outcomes and improved educational performance. The law must be enforced so that school districts do not deny these children the array of related services necessary to benefit from the special education program.
Ceasing educational and other services for students as a means of disciplining them violates the principle of leaving no child behind. The law's existing discipline provisions are adequate and should not be changed. IDEA must continue to provide the safeguards necessary to ensure that children and adolescents with mental or emotional disorders are not unfairly targeted and excluded from the educational system. Children and adolescents with mental and emotional disorders have previously been subjected to attempts to exclude them from the classroom. Instead, school-based resources should be dedicated to properly identifying and providing appropriate special education services to these students, which has been shown to produce positive educational outcomes.
Promote the use of positive behavioral supports. Positive behavior support is the application of positive behavioral interventions and supports to achieve positive change -- an approach that is proving both effective and practical in schools. Positive behavioral support is the application of the science of behavior to achieve socially important change with an emphasis on behavior change that is durable, comprehensive, and linked to academic and social gains. The development of positive behavioral interventions and plans are guided by a functional behavioral assessment that is a systematic way of identifying problem behaviors and the events that predict occurrence, non-occurrence, and maintenance of those behaviors. NAMI is pleased that the Department of Education, Office of Special Education Programs has embraced this effective, proven and positive approach to discipline and intervention. Schools should continue to establish and implement research-based and effective programs that prevent school disruption by any and all students.
States must have the resources to effectively screen and identify all eligible children for developmentally appropriate progress to maximize their ability to enter school ready to learn. Implementing the Surgeon General's recommendations to push for more prevention and early intervention services is fundamental to lowering future health care costs and promoting the opportunity for children with mental or emotional disorders to achieve independence and economic self-sufficiency as adults. Some children manifest the signs and symptoms of a serious mental or emotional disorder at an early age. Early intervention and preschool services must be available to all eligible children. Programs authorized by Part C and Section 619 of Part B allow states to create family-centered systems of services across multiple programs and funding streams to ensure infants, toddlers and preschoolers are prepared for school and learning. It is critical that state and local school-based programs ensure that no child is left behind.
Increase and encourage collaboration at the State and local level among government agencies that serve children. Schools cannot address the needs of kids with serious mental or emotional disorders alone. Community services should be coordinated across the agencies responsible for serving the needs of children and information made readily available to families on the availability and array of community services. With an astronomical 60 - 75 percent of youth in the juvenile justice system suffering from a mental or emotional disorder, education systems should partner with the Department of Justice. Families that are eligible, should be made aware of the full array of federal programs, such as Head Start and Medicaid -- including EPSDT services, available to serve the needs of children. All agencies that serve children should have a coordinated approach and work to increase collaboration at the state, local and federal levels to improve the educational outcomes for children and adolescents.
The U.S. Department of Education should continue to focus on comprehensive system wide initiatives that are designed to create a seamless web of supports and services that "wraparound" children and families and help to end the current fragmentation in the systems designed to serve youth.
Our nation must address the crisis currently facing children and adolescents with mental and emotional disorders and their families. The burden of suffering for these children and their families is well-documented and enormous. Ensuring an effective special education system is a worthwhile investment in the future of our children and this country. IDEA was enacted as a federal civil rights statute in response to the neglect and failure of school systems to meet the most basic education needs of children with disabilities. States, local education agencies and the federal government have failed to enforce the provisions of this critically important legislation, denying children with mental or emotional disorders their fundamental right to a free appropriate public education. (National Council on Disabilities, Back to School on Civil Rights, January, 2000). The reauthorization of IDEA must be designed to improve the special education system and to ensure the enforcement of the statute to serve the educational needs of all children with disabilities.
Thank you for the opportunity to provide comments. Please contact either Darcy Gruttadaro (Director, NAMI Child & Adolescent Action Center) or Kim Encarnation (Senior Federal Affairs Representative) if you have any questions or concerns related to our comments.
Richard C. Birkel, Ph.D.