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The Individuals with Disabilities Education Act (IDEA) reauthorization bill was signed into law on December 3, 2004. Although some protections from the prior law were removed, new provisions contain some important gains for children with Tourette Syndrome.
For the most part, the changes are effective July 1, 2005. Federal and State regulations still need to be written to implement these changes. TSA is concerned about how some potentially negative provisions will be interpreted and administered. Also, without full funding (not required under the new law), many positive initiatives may not be put into practice.
Below is a brief review of some changes that we believe will most directly affect students with TS. As Federal Regulations are finalized (2006-7?), TSA will provide an update.
For a more comprehensive summary of the new law, please see http://www.fape.org/idea/2004/summary.htm Also, there is a 200+ page side-by-side comparison of the new law with the 1997 IDEA for sale at http://www.nasdse.org/
Short term goals will no longer be required on IEP’s for the vast majority of students. Only IEP’s for students designated by the IEP team as requiring alternate assessments under No Child Left Behind (i.e., those with the most significant cognitive disabilities) will still require benchmarks and short term goals.
Parents and teachers have depended on short term goals to measure the adequacy of the student’s progress in attaining an IEP’s stated annual goals. Parents should continue to advocate that short term goals be identified by the IEP team. This is important so that teachers and parents may have some yardstick for measuring student progress throughout the school year.
IDEA 2004 encourages parent participation at IEP meetings by allowing alternative means of attendance, e.g. by telephone or video conferencing.
Minor changes can be made to a student’s IEP without reconvening the entire IEP team if the school and parents agree on the change.
This may become increasingly important regarding IDEA 2004’s changes to the discipline section requiring parents to prove that the current IEP was not being implemented. It will be critically important that parents take proactive steps to ensure that the current IEP is appropriate even as symptoms change. Equally important is that parents are involved with any minor changes that the school may want to make without convening an official IEP meeting.
IDEA 2004 provides the opportunity for up to 15 states to develop comprehensive multi-year IEP’s, not to exceed 3 years, instead of the current mandatory annual IEP. Parents must agree to a 3-year IEP in writing. Multi-year IEP’s must include measurable goals, and provisions for revision and review annually and at a child’s natural “transition points”.
Parents of students with TS will want to approach the 3-year IEP with a great deal of caution, as symptoms of TS and environmental factors change—requiring that IEP’s change—to meet the evolving needs of the child.
Functional Behavioral Assessments and Positive Behavior Intervention Plans are retained in the reauthorized law. Additionally, throughout IDEA, schools will need to provide support not only for academic progress, but also for functional and behavioral goals. This is critically important when supporting students with TS.
One significant change for students regards the protection of Manifestation Determination. The Manifestation Determination Review takes place when a school is considering a change of placement or suspension for a student with disabilities. IDEA 2004 still requires that a Manifestation Determination hearing be held to determine if the behavior was due to the disability.
If it is determined that the behavior was a manifestation of the disability, then disciplinary action is deemed inappropriate and instead, the IEP team shall:
In a major setback, though, the new law places the burden of proof on the parent to prove that the conduct at issue was “caused by” or had a “direct or substantial relationship” to the disability. Under the former IDEA, the school needed to prove that the behavior was NOT due to the disability.
Also, the prior law provided that manifestation was achieved if a parent could show that the current IEP was not appropriate. Instead of the student receiving punishment, the school was obligated to examine the IEP and make appropriate changes. With IDEA 2004, the parent must prove that the conduct is a “direct result” of the school’s failure to implement the IEP.
These are major changes removing safeguards which helped protect students with disabilities from being wrongfully punished for symptoms of the disability. The changes noted above could be very detrimental to students with TS. They put the onus on parents to prove that a behavior was directly or substantially related to Tourette Syndrome. While there are a few tics that are recognized by almost everyone, each individual with TS is unique and will have his own specific manifestation of symptoms. The complexities of the symptoms of TS confound neurologists. Determining whether the conduct was "caused by, or had a direct and substantial relationship to the child’s disability” will depend on the level of knowledge regarding TS symptoms and undoubtedly is highly likely to result in students receiving harsh punishment for misunderstood symptoms.
On a positive note, the discipline section begins by stating that school personnel may consider “any unique circumstances on a case-by-case basis”. When dealing with their child’s school, parents should stress that each child and every situation is unique, and that a common sense approach is usually the most effective method of dealing with an issue.
“Stay Put” has been a critically important protection. It allowed students to continue to receive a free and appropriate education in the current placement if a parent challenged the manifestation determination decision that resulted in a proposed change in placement. Under the reauthorized IDEA, the right of the student to remain in the current placement during the appeal process has been eliminated. Parents should be aware of this change, and that the new law is complex regarding this issue. Parents must be sure to understand the complexities of the new “Stay Put” provisions if they are appealing a decision regarding a change of placement for their child. Until the new law begins to be implemented, Stay Put remains an option for parents.
IDEA 2004 supports the whole-school approach regarding early interventions and positive behavior interventions, an extremely effective approach in educating all students—particularly those with disabilities such as TS. Acceptance and understanding typically reduces stress, grades go up and tics and difficult behaviors are lessened. When entire schools are invested in this type of approach, the benefits are magnified. TSA hopes that the funding will be available to support the type of training that is necessary for these initiatives to become a reality.
There are new guidelines that schools provide “high-quality, intensive pre-service preparation and professional development for all personnel who work with children with disabilities to improve the academic and functional performances”.
This will greatly enhance parent’s requests for vitally important in-services for teachers and support staff, educating them about symptoms and effective supports for students with TS. Educating school personnel is a tremendous plus in any effort when advocating for students’ rights. This new language will ensure that staff education becomes a priority.
IDEA 2004 emphasizes high quality teacher performance and requires that all special education teachers demonstrate competence in all core academic subjects they teach.
IDEA 2004 encourages the federally-funded Parent Training and Information Centers to put a greater focus on training parents and schools to use collaboration techniques.
Additionally, IDEA attempts to discourage litigation, and to encourage the use of mediation between schools and parents prior to the exercise of the due process rights that involve impartial hearings.
IDEA emphasizes and redefines transition services (preparing the student for life after high school) to focus not just on academic achievement, but also on the functional development of the student.
The words “functional development”, which can be critically important for children with TS, have been retained. Transitional services must be identified on the first IEP to be in effect when the child is 16.
IDEA maintains the definition for “specific learning disability.” However, schools will no longer be able to claim that the only way they can provide this classification is if the child has a severe discrepancy between achievement and IQ scores.
Parents and advocates will need to be aware of the specific language because it does not say that they cannot use the “discrepancy” as one criteria, but that the schools “shall not be required to take into consideration whether a child has a severe discrepancy between achievement and intellectual abilities”.
Schools will be prohibited from requiring that a child obtain prescription medication as a condition of attending school, receiving an evaluation or receiving services. IDEA does not, however, prohibit school personnel from sharing important student observations regarding the student’s academic and functional performance, while either on or off medications, with the parent.
Schools may use up to 15% of IDEA funding for students without disabilities who require additional academic and behavioral supports to succeed in a general education environment. This allows schools to use funding to support students who may require minimal support without identifying them through either the IEP or 504 processes.
IDEA 2004 requires that Evaluations be provided and administered in “forms most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally.” The focus is not strictly on the academic achievement of the child, but must now include developmental and functional abilities, which are important considerations for students with TS.
IDEA also provides that initial evaluations must be conducted within 60 days of receiving parental consent, unless the state has already established a timeline for these activities.
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999