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NAMI E-News August 23, 2002 Vol. 02-93
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NAMI Comments on Recommendations for Special Ed
Earlier this week, NAMI submitted comments to the Federal Office of Special
Education and Rehabilitative Services regarding a report issued recently by the
President's Commission on Excellence in Special Education. The Commission's
report was published in the Federal Register of July 18, 2002 and can be
accessed at
http://www.ed.gov/inits/commissionsboards/whspecialeducation/. The
President's Commission on Excellence in Special Education was established by
President George W. Bush to collect information and study issues related to
Federal, State and local special education programs with the goal of
recommending policies for improving the education performance of students with
disabilities. The Commission's report could influence objectives of the Bush
Administration in the forthcoming reauthorization of the Individuals with
Disabilities Education Act (IDEA) scheduled in 2003.
While praising many of the recommendations in the Commission's report, NAMI
expressed major concerns with three recommendations contained in the report.
First, NAMI's letter expressed concern with the Commission's recommendation to
streamline documentation and procedural requirements in IDEA, pointing out that
many of the existing procedural and due process protections are in the law to
give families of children with disabilites a voice in their efforts to advocate
for appropriate educational and related services for their children. Second,
NAMI has major concerns with the Commission's recommendation to reduce 13
eligibility categories currently in IDEA to three categories - "sensory
disabilities", "physical and neurological disabilities" and "developmental
disabilities." We are particularly concerned that the Commission's
recommendation to classify mental illnesses as "developmental disabilities -
emotional disturbance" could impose barriers to special education services for
some children with mental illnesses and does not reflect evolving scientific
evidence that early onset mental illnesses are neurobiological brain disorders.
Finally, NAMI's letter expressed concerns with the Commission's recommendation
to maintain federal funding of IDEA as discretionary and not mandatory. The
historic lack of full federal funding for IDEA is one of the major reasons why
appropriate special education services are limited in many communities. NAMI is
on record as supporting mandatory full federal funding of IDEA.
However, NAMI also praised many of the issues raised by the Commission in its
report, including:
 | the importance of early assessment and identification of children and
adolescents with disabilities, including children and adolescents with mental
illnesses; |
| the importance of meaningful family involvement and participation in all
aspects of educational services and experiences of children with disabilities; |
| the need to improve training and professional development for special and
general education teachers as well as other school personnel who work with
students who have disabilities; and |
| the critical importance of transition planning and services for young people
with disabilities making the transition from school to work or adult systems. |
We are interested in your thoughts and comments about NAMI's reactions to the
Commission's report, the report itself and about the impending reauthorization
of IDEA. Please submit your comments to Darcy Gruttadaro,
Darcy@nami.org, or Kim
Encarnation, Kim@nami.org. The text of NAMI's letter follows.
August 19, 2002
Thomas Irving
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.
Sincerely,
Richard C. Birkel, Ph.D.
Executive Director
The NAMI E-News is an electronic newsletter delivering the
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Thank you.
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