Nearly every baby born with an orofacial cleft is able to live a healthy life. But as they grow, children born with birth defects often require additional services to accommodate their unique differences and help them flourish.
We’ve mentioned elsewhere that a cleft palate and / or cleft lip can affect air flow and the creation of certain sounds during speech, and frequent ear infections may contribute to hearing loss. In educational settings, many children with orofacial clefts need extra attention because of these speech and hearing difficulties.
Free & Appropriate Education: The Individuals With Disabilities Education Act & Your Child
Signed into law on October 30, 1990, the Individuals with Disabilities Education Act (IDEA) is a sweeping federal law that gives every student with a disability the right to a free appropriate public education (FAPE).
IDEA acknowledges that many children are better served by learning through unique, individually-tailored education programs. And the law ensures that every child is fully supported by states and public agencies in a way that accords with his or her “disability.”
What Is Free Appropriate Public Education?
In essence, IDEA says that public schools in the US must provide children with an education, including any additional services like individualized instruction that they need. These additional services should be free.
That’s the meaning of “free and appropriate”: it’s appropriate because it supports your child’s specific needs and it’s free because it’s free.
Does My Child Qualify?
In order to qualify for IDEA, your child must have one of these “disabilities”:
- speech or language impairment
- hearing impairment
- visual impairment
- traumatic brain injury
- mental retardation
- emotional disturbance
- orthopedic impairment
- developmental delays (applies only to children between the ages of 3 and 9)
- a learning disability
- other health problems
Your child will need to be independently evaluated by a team of professionals, including a general education teacher, special education teacher and any applicable specialists, like a speech-language pathologist. An authority from the school district with power to allocate public resources toward your child’s education is also required. If your child is old enough to participate in his or her evaluation, their input is welcome, too.
If the evaluation team determines that your child’s needs cannot adequately be met in a normal educational setting, he or she will be assigned special education.
Creating An Individualized Education Program (IEP)
After qualifying for special education, your child’s needs will be evaluated by members of the school district and you.
Under IDEA, the parents of a child with a disability are considered “equal partners” in the education process.
Then you’ll determine how your child’s needs will be met, whether that means providing additional services, like speech-language pathologists and audiologists, or making modifications to the general curriculum.
Every IEP will cover:
- the unique way in which your child learns
- how your child demonstrates that learning (how to “track progress”)
- where and when your child can benefit from the general curriculum
- how teachers and specialists can help your child learn in the most effective way
One major component of IDEA is the concept of “least restrictive environment.” IEPs should be designed to segregate children with disabilities as little as possible from non-disabled students. Your child has the right to become an integral member of the educational community, if this is possible.
Making Sure The IEP Works
After a child’s individualized education program is in place, parents have the right to monitor their child’s progress as closely as they choose. Over the course of your child’s education, the IEP team will reconvene at regular intervals (usually once a year) to monitor the program’s efficacy, identify areas for improvement and alter the program as needed. You always have the right to attend these meetings and guide your child’s education in their best interest.
You are entitled to copies of your child’s work and tests if you want to track their progress on your own.
If you feel that the IEP isn’t working, speak with your child’s teacher first. Ask them if they’ve noticed any difficulties themselves, and whether they have any suggestions. You can find more suggestions on evaluating your child’s IEP here.
If you believe that your child’s rights have been violated, you may have to file a complaint with the state’s education agency. IEPs are contracts, and the public school district only has to provide services outlined in the program.
If you’d like to change the IEP, but the school is unwilling, you can consult with experts and develop a program that you think better meets your child’s needs. Then, in a mediation session, you can present your plan (along with the experts you’ve consulted) to an impartial third-party who may or may not instruct the school district to adopt the guidelines you’ve developed.
Early Intervention Programs
Under Part B of the Individuals with Disabilities Education Act, children become eligible for individualized education at the age of three.
Part C is intended for children younger than three. Children born with developmental delays, or conditions with a high probability of resulting in a developmental delay, may be eligible to receive state-subsidized early intervention services.
Early intervention services can include assistive medical devices, as well as specialist like:
- Speech-language pathologists
- Counseling for families
Some, but not all, of these services are offered at no cost. Others will be priced on a “sliding scale,” so fees will take how much you earn into account. With that being said, none of the services can be denied to a child if their family cannot afford them.
You can find out who to call in your area for more information about applying for early intervention here.