Delays, disabilities and the law

law-books-and-gavelWhether your child was a preemie or not, the good news is that our federal laws provide the means for your child to get help if he needs it. If your child needs early intervention, special education or related services he is not alone. More than 6 million children with delays or disabilities receive special education and related services in schools in the U.S. every year!

Children may need services for any number of reasons, including medical conditions related to prematurity. Children born preterm will often need extra help in a number of developmental areas. A recent 2012 study in Pediatrics noted that about 45% of children born with an extremely low birth weight were in special education programs at age 14 compared to about 10% of children born with a normal birth weight.

Know the language

Learning the lingo can be the hardest part of navigating the early intervention and special education system. You may feel as if you just got a new job but when you arrived at work on your first day, everyone was speaking a different language. You feel lost and often foolish asking basic questions, to which everyone already seems to know the answers. If your child has any kind of need, it is important that you know the language, or at least know the basics. Let’s start at the beginning.

What is IDEA?

IDEA is the federal law that governs how states provide early intervention and special education services. It is short for the Individuals with Disabilities Education Act. This law has been revised several times since it was first passed in 1975.  It spells out what your child is eligible to receive and what your state is responsible to provide. It is also a bit vague sometimes, which may leave details and interpretations up to individual states  and local school districts. However, on the whole, it is the roadmap for you if your child needs services, and it is essential for you to know that it is there to support your child.  Most parents will never need to refer to the actual law (officially referred to as Public Law 108–446 which is very, very long), but in case you ever have trouble falling asleep at night, you can find it here.

What is FAPE?

Did you know that in the United States, every child is entitled to a free and appropriate public education? This is commonly referred to as FAPE. According to IDEA, FAPE “means special education and related services that—(a) Are provided at public expense, under public supervision and direction, and without charge…” and are provided along with an Individualized Education Program (IEP) in an appropriate school setting (eg. preschool, elementary or secondary school). Learn more about IEPs in this post.

What is Special Education?

According to IDEA, special education is “specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability…” That is a powerful sentence – go back and read it again. Now, here is what it means…Special education can include an incredibly diverse set of services and is individualized to meet the needs of a specific child. This education might include specific classes, programs or services, such as tutoring, provide an aide or assistant, special adaptive or computer equipment, a different curricula, etc.  By the way, SPECIAL ED IS NOT A PLACE!  It is a specially designed instructional program, particular to your child’s needs, to enable your child to access the general curriculum at school. It can be put in place in your child’s classroom or anywhere else that is decided by the IEP team, as long as it is in the “least restrictive environment” or (LRE).  Wrightslaw has more information about the different options that may be included in the LRE.

What are Related Services?

Simply put, related services are all of the other services and/or therapies that a child may need. This may include (but is not limited to) speech and language, physical, occupational and recreational therapies, psychological counseling, guidance, social work, and transportation. Click here for details and examples of many related services. According to IDEA, in addition to special education, a child can receive “such developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education.”

What are Supplementary Aids and Services?

IDEA says supplementary aids and services are “aids, services, and other supports that are provided in regular education classes, other education-related settings, and in extracurricular and nonacademic settings, to enable children with disabilities to be educated with nondisabled children to the maximum extent appropriate…” NICHCY helps to explain this part of the law. They say: “Speaking practically, supplementary aids and services can be accommodations and modifications to the curriculum under study or the manner in which that content is presented or a child’s progress is measured. But that’s not all they are or can be. Supplementary aids and services can also include direct services and supports to the child, as well as support and training for staff who work with that child. That’s why determining what supplementary aids and services are appropriate for a particular child must be done on an individual basis.”  Visit the CPIR website to see NICHCY’s long list of possible services  that may be included under the umbrella of supplementary aids and services.

Take a breath – don’t get overwhelmed

This post contains a lot of information. But, the important thing to remember is that there are laws in place to help your child. As a parent, it is important to know about them and become informed. (You wouldn’t drive a car without first learning the rules of the road…right?) But don’t get discouraged. No one learns all of this overnight. Be patient with yourself.

In my next post, I will give you a long list of common terms and diagnoses to help you learn more of the lingo. So stay tuned.

Have questions?  Send them to AskUs@marchofdimes.com.

Note:  This post is part of the new weekly series Delays and disabilities – how to get help for your child.  It appears every Wednesday, and was started on January 16, 2013. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

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