Families facing the challenges of Charcot-Marie-Tooth disease have a lot to think about: therapeutic interventions, orthotics and adaptive equipment, not to mention the social-emotional implications of growing up with CMT. Another important area that may demand attention is education. Strong advocacy is often needed at school to ensure that your child receives appropriate accommodations and services to promote academic success.
We wanted to outline very generally the law regarding such accommodations and services, intended as an overview and starting point. We hear from many parents all over the country, and while some are very satisfied with the educational services offered to their child, many more have had to engage in significant advocacy, either themselves or through a legal representative, in order to obtain what their child is legally entitled to. While this article is not intended as legal advice or consultation, we do feel it is important for parents to understand the basic system and legal framework regarding special education, and we hope to provide important general information in that regard.
Basically, every child in this country is entitled to a “free and appropriate public education” or FAPE as it is commonly known. There are two main federal statutes that provide for FAPE.
Individuals with Disabilities Education Improvement Act (IDEIA)
This law derives from the Education for All Handicapped Children Act of 1975 (the old “PL-94-142”), Congress having renamed it using more politically correct language. The statute says that children with disabilities are entitled to FAPE, and if necessary, schools are required to provide special education services and accommodations within an individualized education plan in order to provide educational benefit to each child. Other important provisions of IDEIA are the requirement that children have a right to be educated in the least restrictive environment (LRE), the obligation of school systems to identify and evaluate students for potential IDEIA eligibility, and the extensive procedural safeguards that are provided to parents of children with disabilities.
The IDEIA provides for a whole process of evaluation, eligibility determination, IEP development, re-evaluation, and transition services for children who grow up with a disability and who need special education services. Parents are an integral part of this process, which is implemented through periodic meetings of team members from a wide range of professional disciplines. Parents are free to include any other participants in the process, including outside professionals working with their children, advocates, educational consultants, etc. Students’ progress is measured within their own IEP, with specific goals and objectives to be worked on each year. Students are eligible for services under IDEIA from birth through age 21.
Something to research for families of kids with CMT is the use of assistive technology and adaptive equipment. There are constantly new advances made in this area, and you may not know of all that is available without a bit of searching. School personnel may be qualified to evaluate the appropriateness of some of this technology, but you may also want to look into it on your own and bring these ideas to your school. It is sometimes surprising what can be provided for your child through school, things such as laptop computers, Alpha Smarts, etc. Other services to look into are occupational therapy, physical therapy, and adaptive physical education.
Section 504 of the Rehabilitation Act of 1973
While perhaps less known than its more popular cousin, IDEIA, Section 504 is in some ways a more powerful law. Section 504 is a civil rights law. It states that no one, solely on the basis of his/her disability, can be denied access to, or be subject to discrimination within, any program receiving federal money. What it means is that kids with disabilities have a right to access to a FAPE. If a student needs certain accommodations, modifications, or services in order to have the same access to education as his/her nondisabled peers, then these must be provided by the school. The specifics are listed in a “504 Plan” and implemented appropriately, reviewed periodically, and modified if necessary.
Now, access doesn’t necessarily mean individualized programming. That usually comes from the IDEIA. Section 504, however, should always be considered for possible paths of advocacy because complaints stemming from alleged 504 violations are handled by different agencies, and the possible remedies are different. Section 504 does not provide the same level of procedural safeguards as found within the IDEIA, but it can be powerful advocacy tool nonetheless.
One common misconception is that kids with a 504 Plan are in mainstream or inclusion settings, and kids with IEPs are segregated in separate educational settings. This is not the case. The IDEIA requires that children be educated in the least restrictive environment, and thus a child with an IEP is just as likely to be educated in the general education setting as a child with a 504 Plan. The analysis for determining whether your child falls under the IDEIA or Section 504 is usually whether he/she needs services in order to gain benefit from the least restrictive educational setting (IEP) or rather needs only accommodations/modifications to gain access to public education (504 Plan).
Also interesting to note is the language in Section 504, 29 U.S.C § 701(a)(3): disability is a natural part of the human experience… An oft-quoted phrase in the disability rights community, this language helps to reframe the issue for children and adults alike. Disability—unlike gender, race, and ethnicity, which were protected under previous civil rights laws—is something that could potentially arise in just about anyone. It is shocking to think that Congress didn’t think to protect this class of citizens until 1973…but that’s an article for another day!
Other related laws:
No Child Left Behind (NCLB)
This law was written to ensure that all children receive a “high-quality education” and that they reach, at a minimum, “proficiency on state academic assessments.” And that’s where we got all those pesky tests from!
NCLB has implications for kids with disabilities because it provides benchmarks that all children are supposed to achieve at certain grades across all subjects. Because of NCLB, all students are assessed yearly in core subjects, and this can provide important data regarding your child’s academic progress, or lack thereof due to an inappropriate IEP. In addition, NCLB requires that special education teachers be “highly qualified,” and although requirements for this classification vary by state, it ensures that special education teachers meet a minimum standard. Finally, because of the frequent testing required under NCLB, children are entitled to certain testing accommodations, such as extended time or a scribe to write their answers if their disability interferes with their ability to perform on the test.
Americans With Disabilities Act, Title II and III (ADA)
The ADA is an anti-discrimination law passed in 1990 (yes, once again, it took that long!) that protects people with disabilities from discrimination in multiple settings, not just in programs receiving federal money, which was what had been in place previously under Section 504. Title II of the ADA provides for accessibility to “public accommodations” which would include public schools. Title III provides for access to “private facilities” which would include private schools. Like Section 504, the ADA addresses the issue of access and is a civil rights law. Complaints of ADA violations are handled by the federal Office of Civil Rights (within the U.S. Department of Education), not by state or local education agencies.
Family Educational Rights and Privacy Act (FERPA)
This law protects the privacy of parents and students regarding their educational records. Basically, these records cannot be disclosed without parental consent. Parents have a right to review their child’s records and to obtain copies (although schools can charge for this service). Parents have the right to ask that any incorrect or inaccurate information contained in the record be changed, and there are provisions for a hearing on this issue if there is continued disagreement.
This law has implications for kids with disabilities because special education services are based on documentation and data, and parents’ access to their child’s records as they navigate this process is crucial. As with everything you do within this context, put your request for records in writing in order to ensure that the school responds in a timely fashion.
As they say, knowledge is power, and it’s no different in the field of education. The law provides for a multitude of services and accommodations for children with disabilities, and unfortunately, we can’t always rely on our schools to inform us of this. School systems are charged with providing FAPE to children, but they’re also responsible for budget management, and these interests are often at odds. As parents, we’ve got only one thing to focus on: getting our children the education and support they have a right to. We hope that this overview gets you started, as well as the links below: