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Protections of Students with Disabilities

BSF has member families from all over the world, but the majority of the families are currently in the United States. In order to keep this discussion of legal protections as readable as possible, the focus here will be on the laws of the United States federal government. Certainly, other countries have different laws and some variations on the laws below. Also, each state and local school district in the U.S. has its own specific laws that might add to, but not take away from, the protections discussed below. While the following discussion offers a simplified and readable version of the kinds of laws that protect students with Barth syndrome (BTHS) in the public-school system in the United States, it is hoped that parents from other countries will find some guidance in this section.

If parents are interested in reading a more thorough discussion of the legal protections discussed in this section, they should get a copy of an outstanding book called From Emotions to Advocacy – The Special Education Survival Guide, by Pam and Pete Wright. Chapters 13-20 cover the legal issues that a parent would want to learn about. Basically, all parents of students with BTHS could benefit from having this book, and its complete bibliographical information will be in the resources section of this handbook.   

Lastly, if parents are truly interested in learning about the laws that protect their child with BTHS, regardless of what country or state they live in, they should seek out professional advice and support. In the U.S. one’s local public-school district will have educators who are responsible to explain the laws fully to parents if parents ask for guidance. Furthermore, parents should not hesitate to reach out to BSF for additional assistance.

No book, guide, or handbook can replace the direct advice that a parent needs when dealing with these potentially complicated but powerful laws that can make the difference in a child’s education and development. Still, it helps to have a written explanation of the laws to use as a reference.

A student with BTHS in the U.S. will almost certainly be eligible for special accommodations in his education under one or a handful of United States federal laws. Parents should not be afraid that their children will be harmfully  “labeled” if they take advantage of these protections. The protections are far more important than the usually misplaced fears of labels. Furthermore, parents should not be afraid that their children will immediately be placed in “special education” classrooms if they take advantage of these protections. Being protected as a student with a disability does not necessarily mean that a student will have to be educated apart from non-disabled students.

Schools in the United States have the legal responsibility to identify and evaluate students with disabilities. If a public-school has not made the decision on its own to evaluate a student with BTHS (possibly because the student attends a private school), his parents have the right to ask the local public school system to conduct, at no charge to the parents, an evaluation of the student’s potential physical and/or cognitive disabilities. Furthermore, if the parents do not agree with the school’s evaluation of their child, they have the right to have their child tested by an independent evaluator. Some school districts can be reluctant to perform these evaluations, but parents should not allow a school to win this argument. Parents might be able to find professional student advocates in their area to help in this endeavor, and they can always call on the BSF for help and advice.

Parents (in America and in countries with similar public education systems) may find it helpful to call the department of education in their state/region and ask to speak to someone in special education who is assigned to their home district. This call should be made before problems arise. When the parent speaks with the individual assigned to their school, they can explain more about BTHS (and arrange for a BSF Educators’ Handbook to be sent to the individual) and ask questions about testing, accommodations, and services. During this call, parents can ask for their child to be tested. Through this call, parents make a valuable contact with an individual charged with protecting the rights of their child. By asking if they can call the individual back some time in the future for more guidance, parents can help assure that the special education person will be checking in with the local school.

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