August 23, 2002
NAMI Comments on Special Education Project
Letter to U.S. Department of Education
August 19, 2002
Office of Special Education and Rehabilitative Services
U.S. Department of Education
400 Maryland Avenue, SW
Mary E. Switzer Building, Room 3086
Washington DC 20202-2570
Re: Commission Report on Special Education
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 Report of the Findings and Recommendations of the President's Commission on Excellence in Special Education, published in the Federal Register, July 18, 2002 (Volume 67, Number 138).
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 applauds the leadership of President Bush in creating the Commission on Excellence in Special Education. NAMI is pleased that the Commission traveled around the country to listen to families, youth, experts, school personnel and advocates. They testified about how the Individuals with Disabilities Education Act (IDEA) has failed so many families and presented ideas on reforming our special education system through IDEA reauthorization to achieve our national goal of improving the educational outcomes for children with disabilities and leaving no child behind.
NAMI appreciates the opportunity to submit comments on the Commission's Report. NAMI's members across the country greatly value the safeguards and services that IDEA 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 in the least restrictive setting. Unfortunately, as the Commission report makes clear, the law has not been well implemented at the federal, state or local levels, adversely impacting millions of children with disabilities.
Children and adolescents with mental illnesses make up a significant number of students currently served by IDEA. According to the Surgeon General's 2001 report on children's mental health, 1 in 10 children and adolescents in the United States 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 Commission's report recognizes the failure of schools to emphasize prevention, early and accurate identification of problems and intervention using research-based approaches. 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. 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.
The Commission's report includes several recommendations for the reauthorization of IDEA that are critically necessary and that NAMI stands firmly behind. However, the report also includes several recommendations that would prove detrimental to students with mental illnesses and their families should they be incorporated into the IDEA reauthorization process. The most concerning recommendations include the following and will be addressed first below:
- Streamline the documentation and procedural process that currently exists under IDEA;
- Reduce substantially the eligibility categories from thirteen categories to three; and
- Continue to make federal funding of IDEA discretionary and not mandatory.
The documentation requirements and procedural protections included in IDEA are necessary to make school districts accountable for meeting the basic education needs of students. The Commission report is clear that IDEA is not being well enforced, implemented or monitored at the federal, state or local levels. Therefore, it is more important than ever that paperwork and process be in place to ensure the protection of the civil rights of all students with disabilities and hold schools accountable. The report correctly points out that our schools must work to improve the educational outcomes of children with disabilities and minimize the paperwork burden of all teachers so that they can spend more time in the classroom on individualized student instruction. However, we must not forget that many of the existing procedural and due process protections were added to IDEA because families had routinely been cut out of providing input on the education of their children with disabilities. The protections were added to level the playing field between schools and families. In fact, the 1997 IDEA amendments reinforced and strengthened the provisions that protect the rights of parents to be involved in educational decisions affecting their children - including eligibility and placement decisions. Something that families had not had up to that time. It is critical that we not roll back these family rights, especially when no state has been in full compliance with IDEA.
One of the ways to reduce the paperwork burden on teachers is to direct the federal Department of Education to more carefully review state regulations and provide instructions and technical assistance in instances where states have implemented rules that result in unnecessary paperwork requirements. The focus should be on the federal Department of Education fulfilling its role of providing technical assistance to the states and not on curtailing the rights of families.
The Commission's recommendation that the IDEA eligibility categories be reduced from 13 to 3 may result in fewer students with mental illnesses receiving special education services. The Commission recommends collapsing the existing thirteen eligibility categories into three for the assessment and identification of students to determine their eligibility for services under IDEA. The Commission recommends the following three eligibility categories:
- Sensory disabilities such as visual impairments, hearing impairments, deaf and blindness;
- Physical and neurological disabilities such as orthopedic impairments, other health impairments (this includes ADHD), traumatic brain injury, multiple disabilities, autism; and,
- Developmental disabilities such as specific learning disabilities (SLD), speech and language impairments, emotional disturbance, mild mental retardation and developmental delay.
However, the three categories identified above do not reflect the realities of advancing research and science on early onset mental illnesses and is likely to lead to further confusion in the eligibility determination process. NAMI feels strongly that by lumping all disabilities under three eligibility categories the result will be more students with mental illnesses failing to be assessed and identified for appropriate services under IDEA.
Evolving research and science on early onset mental illnesses has shown that these illnesses -- such as bipolar disorder, schizophrenia, obsessive compulsive disorder, severe depression, anxiety and panic disorders -- are neurobiological brain disorders. These are bona fide medical maladies that seriously interfere with a child's ability to learn. Given that, it is not appropriate to categorize them as "developmental disabilities" under "emotional disturbance" - as the Commission is recommending.
The importance of the eligibility categories cannot be overstated because, despite the fact that the law requires schools to undertake an individualized approach to special education for students, schools often rely on these categories to determine appropriate services and accommodations. The adoption of the proposed categories is likely to result in even more students with mental illnesses being denied appropriate services under IDEA--services that are necessary to fully benefit from special education services. Also, there is a high incidence of co-occurring mental illnesses in children and adolescents. Many children are diagnosed with ADHD and one or two other mental illnesses and many have other impairments that are included in one of the other categories. Because ADHD is included with "other health impairments" under physical disabilities and presumably the Commission is recommending that most other mental illnesses be included under "developmental disabilities" it is likely to cause confusion on which category a student fits in. This may result in more students not receiving appropriate services and accommodations necessary under IDEA, a result that we know must be fixed immediately and not exacerbated.
The eligibility of students with mental or emotional disorders must be protected in any amendments to IDEA and these children must continue to 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.
Congress should guarantee the full funding of IDEA.
The Commission report recommends that Congress continue to have discretion when it comes to funding IDEA. It is time to make a commitment to adequately fund the special education system in this country so that we can begin to realize our national goal of leaving no child behind.
IDEA currently provides 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. Legislation introduced for IDEA reauthorization should call for the mandatory full funding of IDEA to ensure that Congress makes good on its promise to adequately fund special education.
The Commission also makes no mention of the use of Medicaid funding for services provided under IDEA. Schools cannot address the needs of kids with serious mental or emotional disorders alone. All agencies that serve children, including Department of Education and the Center for Medicaid and Medicare Services, 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.
NAMI stands with the Commission on several recommendations for IDEA reform.
NAMI applauds the Commission for focusing attention in the report on the following topics that should be addressed in the reauthorization of IDEA to ensure that students with mental illnesses receive an appropriate education. All of the topics included below were discussed in more detail in the comments that NAMI submitted to the Office of Special Education and Rehabilitative Services on February 25, 2002.
- Improvement in the enforcement and implementation of IDEA at the federal, state and local levels of government which will lead to better outcomes for students with mental illnesses;
- Focus on early assessment and identification to ensure that students with disabilities receive critically needed appropriate services and accommodations as early as possible and that no child is left behind;
- Encourage meaningful family participation in all aspects of the educational experience of their children with mental illnesses;
- Call for improved training and professional development for special and general education teachers and other school personnel who work with students. This must include training on early-onset mental illnesses and the early warning signs;
- Recognition that most schools are failing students with disabilities in transition planning and services as they leave school and enter the "adult system." The report calls for reforms that will bring schools into compliance with the IDEA provisions on transition planning and services;
- Recognition that most schools and school districts have failed to collaborate with other state and local agencies providing services to students with disabilities and their families and calling for an end to the fragmentation that often exists as a barrier to services in the systems designed to serve children and their families.
The Commission report articulates the crisis currently facing children and adolescents in special education. This is particularly true for students 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. 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 Tomlinson (Senior Federal Affairs Representative) if you have any questions or concerns related to our comments.
Richard C. Birkel, Ph.D.