Help is Out There. Learn Where to Look
From the experience of a parent with a child on the spectrum
You’re already your child’s biggest fan, but if she has just been handed a diagnosis of ASD, you also need to become her loudest cheerleader and fiercest champion. You might feel powerless right now, but you’re not. In the eyes of the law, you are your child’s advocate, and you hold the power to help her in more ways than you might think possible.
There’s a world of programs and services out there! Now is the time to start learning about your child’s rights so you can do what it takes to secure effective services. Once you understand the law and your power as a parent, you can maximize that power to help shape your child’s future.
Understand the Law
You have a lot to consider when planning your child’s education. From learning acronyms like FAPE, IEP, and LRE, to understanding the whole special education process, it can be overwhelming. This overview of your child’s educational rights is a great place to start.
IDEA
The Individuals with Disabilities Education Improvement Act (most commonly referred to as IDEA) is a federal law that guarantees all children with disabilities will receive a free and appropriate public education that meets their unique needs. In other words, if a child diagnosed with ASD attends public school, his education and any necessary services will be provided free of charge, and must be tailored to his individual needs for learning. IDEA gives all 50 states federal funding for their special education programs, and in turn, each state’s programs must comply with the criteria spelled out under this law.
What IDEA means for parents:
- Any educational service that is determined to be a need of your child must be provided by the school district.
- You are entitled to an equal say in determining the curriculum and services that are right for your child.
FAPE
The law guarantees your child a Free and Appropriate Public Education (FAPE). It’s easy to understand the “free” part, but, the word “appropriate” is vague, and here’s where you, as the parent, must step in on your child’s behalf. Naturally, you want the educational programs and services that are best for your child. But, “best” is not the same as “appropriate.” The US Supreme Court has interpreted “appropriate” to mean the program “must be reasonably calculated to provide educational benefit to the individual child”, meaning your child should continue to make progress.
In short, you are not entitled to any specific treatment you want, only the treatments your district has in place that are deemed to meet your child’s needs. But, you do get a say in determining what those needs are. That’s why your role as your child’s advocate is so important. You will work with your district to decide your child’s current performance level and goals, class and/or school placement, as well as any other related services necessary to help your child learn. Every aspect of your child’s education must be agreed upon, and it’s up to you to show the district what your child needs. You have a lot of power. Don’t be afraid to use it.
Least Restrictive Environment
The IDEA requires that your school district provide the Least Restrictive Environment (LRE) for your child to learn. This means, options like including your child in a general (“mainstream”) class among peers without disabilities must be considered before choosing a more specialized learning setting. The LRE is based on the belief that children with ASD benefit from interacting with typically developing peers who demonstrate appropriate social and language skills.
If it is found that a general education class is not appropriate for your child’s needs — even with the support of an aide — you have the right to pursue other placement options. These include special education classes, special education schools, ABA-based home programs, public or private schools, and ABA-based private schools.
You have the right to request the best education possible for your child, no matter what the challenges may be. But sometimes, no matter how hard you try, you do not get the educational program or placement that you feel meets your child’s needs. In this case, you have the legal right to seek mediation and/or a due process hearing.
Mediation
Mediation is a meeting between you, a member of Early Intervention or the school district and an independent mediator. The mediator acts as a referee in helping you to come to a mutual agreement about your child’s education/services. The goal of mediation is to resolve your differences so that you won’t have to move on to the next (and more costly) step of due process.
Due Process Hearing
If all else fails, you have the right to a Due Process Hearing — in other words, you can sue your school district in an attempt to get your child the help he needs. Make sure to choose a lawyer who specializes in representing children with ASDs. At this hearing, a judge will listen to testimony from both you and the school system, and will make a ruling on the contents of your child’s Individual Family Service Plan(IFSP) or Individualized Education Plan (IEP). Though this can be an arduous and costly process, many parents have won the right to send their children out of district to get a better education.
Explore Other Resources
If Early Intervention or your school district won’t cover all your child’s services, or you want additional services without paying out of pocket, don’t give up. Here are a few additional resources you can explore:
- Your insurance plan. Find out what coverage your child is entitled to. If you don’t live in a state where coverage for ASDs is required by law, you may face an uphill battle to get reimbursed for claims, but hang tough and be strategic. Other medical issues that accompany your child’s ASD (i.e. food allergies, gastrointestinal problems, seizures) may be covered even if the treatment of ASD isn’t, so make sure your service providers code things correctly.
- Medicaid and Medicaid Waiver Program. In some states, through Medicaid, a child with ASD can get coverage for all medical and related services if their parents meet specific income guidelines. In some states, the Medicaid Waiver Program provides free service to people with disabilities, regardless of your family’s income. To find out if your state has a Medicaid Waiver Program contact your local Developmental Disabilities Service organization or speak to your case manager.
- Other parents. Seek out local parents who have children on the spectrum, either through a support group, your doctor or school district. These parents have been where you are, and may be able to give you creative and cost-effective ideas for getting your child the help he needs. Tap into their knowledge about local services such as respite care, camps and therapies that may be available to your child.
Remember, you are your child’s best resource and advocate. By learning all you can about your rights, asking questions and staying involved, you can make sure your child gets the best help possible.
see also:
Child 0-3
Child 3+
What is IEP?