Parents heading into their children’s Individualized Education Program (IEP) meetings at school this spring should keep in mind a few changes made in 2004 to the Individuals with Disabilities Education Act.
IDEA is the federal law guaranteeing children with disabilities access to a public education. IDEA 2004 has added emphasis on preparing children for life after school, having high expectations of their performance, employing “highly qualified” teachers and using research-based instructional methods.
Changes of interest to parents of children with muscle diseases include:
Functional performance and goals
IEP teams now may consider including a statement of “present levels of … functional performance,” and “measurable… functional goals.” For qualifying students with neuromuscular diseases who are keeping up academically but have physical impairments, this recognition of functional performance will help ensure they receive special education services (such as physical therapy) from their school districts.
Accommodations on standardized tests
IEPs now must spell out the individual accommodations necessary for students to complete school district and state tests (such as extra time or help with handwriting). Parents should be aware that state tests sometimes don’t allow the same accommodations as district tests, and account for both on the IEP.
Moving to a new school district
New schools now must follow the IEP from the old school until a new IEP can be written.
Transitioning out of school
The first IEP after a child turns 16 now must include measurable postsecondary goals relating to education, employment and independent living, as well as the services needed to reach these goals.
Although IDEA 2004 eliminated the requirement for “benchmarks and short-term objectives” on IEPs for most students, parents still may request that they be included.
IEP meeting attendance
Despite rumors, IDEA 2004 doesn’t eliminate parents or other key personnel from the IEP team.
However, it allows some team members to be excused from attendance if their areas aren’t being discussed, or if they present their input in writing prior to the meeting. Parents must consent in advance to either of these exceptions.
Also — and only if parents agree — alternative formats may be used in place of face-to-face IEPs, such as video conferencing or conference calls. While these exceptions provide more flexibility, special education advocates recommend that parents use them sparingly and request in-person meetings whenever possible.
Fifteen states, to be named in early fall, will have a chance to experiment with multiyear IEPs. Parents have the right to opt out of this experiment if they wish.
Homework for parents
Preparation is key to writing a good IEP. To learn more about IDEA 2004, visit www.wrightslaw.com, www.greatschools.org or www.fape.org, as well as the Office of Special Education pages on the Web site of the U.S. Department of Education, www.ed.gov.
Troy Justesen, assistant deputy secretary of the Office of Special Education and Rehabilitative Services (OSERS), also suggests contacting the Parent Training Information centers located in each state, which are “run by and for parents.” (Contact information is available at www.ed.gov.)
Justesen, who has spinal muscular atrophy, is in charge of writing the final regulations governing IDEA 2004.