Federal laws guarantee children with neuromuscular diseases an inclusive education in the public schools. Parents need to understand their rights and how the system works, so they can get the best program for their children.
Special education refers to the instruction and related services provided to students with disabilities, including those with physical disabilities. For many years, special ed was provided in a separate setting, but in the past two decades, educators have advocated mainstreaming, including disabled children with "regular" students in some activities.
Today, most educators use the term inclusion, which means helping children with disabilities prepare to participate fully in society by including them in the regular classroom program.
Inclusion is the philosophy behind the IDEA, the Individuals with Disabilities Education Act. This federal law governs all public school systems.
The IDEA guarantees your child, from birth through age 21, a FAPE (free appropriate public education) in the LRE (least restrictive environment). In other words, the school district legally must provide an educational program suited to your child's specific needs, in a setting as inclusive as possible.
The key tool for getting your child's FAPE is the IEP, an Individualized Education Program (or Plan). The IDEA mandates that each disabled child have an IEP and that the parents be involved in developing the plan.
By law, the district must call a meeting between you and school personnel to review your child's IEP at least once a year; but a parent or teacher or administrator can call an IEP meeting at any time.
In some districts, the group that draws up the IEP is called the IEP team; other districts call it the ARD (Admission, Review and Dismissal) Committee. Generally it must include a school administrator, the child's special education teacher, the regular classroom teacher, personnel who've assessed your child's abilities, and one or both parents.
You may invite anyone else you wish to the IEP meeting; for instance, your child's physical therapist or doctor. By junior high, you'll also want your child to attend and have input. The law says children 16 and older must be invited.
At the IEP meeting, the team members work out goals and objectives for the upcoming school year. They write an IEP that spells out exactly how those goals will be addressed. The plan should also include details about supports - whatever is necessary to enable the child to meet IEP goals and receive an appropriate education. This may include personal aides, a physical therapy program, adaptive computers, building modifications, note takers in class and other needs. Failure to provide supports listed in the IEP violates the law.
An IEP is truly a group effort. The district, teachers and family must agree on the final plan. Once it's put in writing and signed by you and the school, the district is legally obligated to provide whatever the IEP calls for - at no additional cost to you.
How the IEP works for you
The IEP is a powerful document for students and parents. It means that you — as the person who knows your child's physical, intellectual and emotional needs best — can insist that the school build his or her day around those needs. It means the school doesn't decide how to educate or accommodate the student; the school must work with, and be accountable to, you.
Hope Barrera, an educational diagnostician in the Alice, Texas, Independent School District, says ARD committees depend on parents. "No one knows this child better than the parent. They have the vital information that's going to help us make school successful for this child."
The IEP process also allows you to take full advantage of the school's expertise and resources. For the process to work at its best, all parties need to be both open to possibilities and realistic.
Val Rudar of Mayfield Heights, Ohio, a parent mentor working with parents of children with disabilities, said, "A lot of the time it comes down to compromise. It's not about what you want as a parent, or what the school wants, it's about, what does this kid need to progress educationally? Establishing a working positive relationship with district personnel is so important."
Research and preparation
As with any endeavor, the better prepared you are, the better the outcome.
Before you go to an IEP meeting, check with your school or district's special education director or pupil service director for information. Most districts will give you a written set of guidelines and rules, including what to do if the committee can't reach consensus.
Few districts have parent mentor programs like those in Ohio, but every state does have a Parent Information Center. These go by various names — Special Education Action Committee, Parent Advocacy Center, etc. You should be able to get the phone number from your state education department.
Be prepared to explain your child's physical condition; a written or oral report from the child's doctor can help. The IEP team may not be familiar with a neuromuscular disease, and this information can help clarify why modifications and assistance are needed.
You should also have a clear idea of what you want the IEP to accomplish.
Rudar advised, "Ask yourself, where do I want my child to be at the end of the next school year, regarding independent living, regarding social, emotional and friendship goals, and academic goals? Your short-term goals and objectives written on the IEP are your stair steps of getting to that annual goal."
Before the IEP meeting, examine the layout of your child's school, especially when he or she is going into a new school, Barrera emphasized. See what changes are needed to provide accessibility to all areas.
If your child has a learning disability in addition to the neuromuscular disease, you'll need to prepare to focus on learning goals as well as physical adaptations.
Think ahead of time about whether full inclusion is right for your child. Most of the time, inclusion has tremendous benefits for kids with physical disabilities. It raises the child's expectations, improves behavior and social skills, and makes the child feel part of the community.
But in a few cases, a child with extreme fatigue, a tracheostomy or a gastric feeding tube may be too "medically fragile" to withstand a full school day. After consulting with your physician, you may decide that part-time or full-time home schooling would be the least restrictive environment for your child's education. Your team will draw up an IEP with academic expectations, tutoring requirements and other details, all of which must be provided by the district.
You may even choose a special education program. Val Rudar's son Donald, who has Duchenne muscular dystrophy, attended a regional orthopedic handicapped program during elementary school. He was in regular classrooms, but Rudar feels he also developed self- confidence from the special program's "self-concept curriculum. The kids at very early ages started learning to identify their disability, identify their feelings, and come to terms with their disabilities in a support group type setting." Donald is now a student at Ohio State University.
Writing the IEP
"The academic goals for a child with muscular dystrophy are generally the same as those for any other student, because most have an average or higher IQ," said Barrera, who has muscular dystrophy. "Then you look at modifications."
The IEP should include a classroom modification page, listing such items as how the student will get to each class or activity. That may require the school to put in an elevator or provide an assistant.
Other modifications could be: a peer volunteer to take notes, extra time and an aide for test-taking, or modifications in the volume of work required. Your child may be given an instructional aide -- a personal assistant to help in the restroom, push the wheelchair and carry out physical therapy assignments.
Rudar said social and psychological goals are often overlooked in IEPs for children with physical disabilities, who may need a push toward social interaction.
For example, your IEP can specify "having the kid hooked up with a buddy during recess time, lunchtime, in the classroom; having a buddy help get their books out and get them prepared at the beginning of class," she said. For social and psychological reasons, classmates, not an adult aide, should assist the child with picking up items, handling books and other simple classroom tasks.
The IEP can help older students learn self-advocacy and independence. It can require the student to explain his specific needs to teachers and ask for assistance. This is good practice in skills he'll need throughout life.
Parents are entitled to monitor how well the school district is carrying out the IEP. Rudar suggests phoning teachers once a month or so and asking how specific goals on an IEP are being addressed.
If you're not satisfied that the school is complying with the IEP, keep records and document conversations about your concerns. If you can't work things out with the teacher, you can call an IEP meeting at any time to review progress.
All districts have a due process procedure to follow when members of an IEP team can't agree on program details. The steps generally first ask a district official to mediate. In a few cases, usually involving students with learning disabilities, parents have brought lawsuits.
An excellent resource covering the IEP process in detail is You, Your Child, and "Special" Education: A Guide to Making the System Work by Barbara Coyne Cutler (1993, Paul Brookes Publishing, (800) 638-3775).