A lot has changed in the educational landscape since most of us parents were in school, however there still remains some mystery and misconceptions surrounding special education and IEPs. Simply put, an IEP stands for Individualized Education Program, and it applies to any child who has been deemed eligible through an official evaluation process to receive special education and related services.
For parents of children with an IEP, it’s fortifying to know the school system is legally obligated to provide a custom-built plan to address a student’s unique educational requirements. But be aware, while the law demands every child be provided a “free appropriate public education,” it is extremely important for parents to become informed of their rights and remain closely involved to ensure the system works to the extent of its purpose and potential.
According to Julie Sinclair of the Federation for Children with Special Needs, the way things typically start for families of young children with special needs or developmental concerns is through Early Intervention (EI). A referral is made and EI comes in to do what Sinclair refers to as a “family focus,” offering families guidance and providing therapy to the child in the natural environment. “If the early intervention professional feels the child may need additional support when turning 3, then they will start the process with the public school,” says Sinclair.
There are generally two broad categories of circumstances where families are compelled to request an evaluation for an IEP: those who have a child who has been diagnosed from a young age with a disability, such as autism or Down syndrome, and those who for one reason or another are concerned that something just isn’t right. While in both cases it is essential to request an evaluation to confirm eligibility for an IEP and assess the needs of the child going into preschool and beyond, when the circumstances are less cut and dry the process can sometimes be difficult and conflicted.
Perhaps your son or daughter isn’t acting the way their siblings did at similar ages or they are overly rough with other kids or exhibit behavior you just don’t understand. In the event you have concerns at any stage of development, Sinclair recommends visiting your doctor and asking for recommendations. The child may need to see a neurologist or other professional who will determine if he meets the criteria that would fall under a disability type.
The three general questions asked in the evaluation process are:
• Does the child have a disability?
• Is the child not making effective progress because of the disability?
• Does the child require specialized designed instruction to make progress?
The law states that the school has the first right to evaluate, and they are obligated to evaluate every area of suspected disability. Parents know their kids, but they don’t always know how to classify their behavior. It is important to share your diverse concerns with the assigned certified specialist so the most thorough evaluation can be performed.
Shadi Tayarani of the Commonwealth Learning Center, a nonprofit organization specializing in working with students with an identified learning need, agrees accessing support and understanding your rights are essential for navigating the IEP process. “You have to show up as prepared as possible to get the most out of the situation,” says Tayarani.
“Lots of parents don’t know you have the right to look at the testing the school has done two days prior to the (IEP) meeting,” Tayarani continues. “You have to request that – a school isn’t going to automatically send home that testing.” She recommends parents review the material beforehand so they can go in, ask questions and clarify any misunderstanding rather than having pages and pages of testing presented that they’ve never laid eyes on.
In the event an IEP is denied or the evaluation doesn’t seem to accurately reflect your child, families have recourse. You have the right to agree to only some of the proposed assessments, ask for additional assessments or request evaluation from an independent provider. According to Joseph Moldover, a developmental neuropsychologist who frequently works with children with special needs, families often wish to go outside the public school for a more in-depth evaluation from a professional with a higher level of expertise.
“Families also can feel there exists a built-in conflict dealing with an entity responsible for determining whether a child’s needs are getting met and are at the same time responsible for meeting those needs,” Moldover says. “[An outside evaluator] can make recommendations independent of budgetary concerns, political concerns and more purely on the basis of the child’s needs.”
Every child is entitled to a free and appropriate education, and that includes the right to have that education in the least restrictive environment. “The least restrictive environment is being educated alongside your typical peers as much as possible. If that isn’t working, if the student isn’t able to access the education in a general classroom, then we might go to more time outside the classroom or a separate classroom or a separate school,” says Tayarani. “It becomes more separate as the need becomes greater.”
According to Sinclair, it’s about figuring out what the child needs to access learning and how the content can be modified to master skills impacted by the disability. For instance, if you are working with a child who has a visual impairment, that might mean modifying the content by making it bigger and more visible, or by limiting the number of items on the page. The parents, along with a team of educators, school representatives and related service providers, must work together to identify everything from the way the child learns best to how progress will be measured toward meeting goals.
While school districts must reevaluate students with IEPs every three years, reevaluation can and should be conducted more frequently. “It’s not necessarily wise to take a wait-and-see approach,” says Tayarani. She advises parents with concerns to go to their child’s teacher for help and information, and to proceed together in determining the appropriate next steps.
“Things go off the rails at all different times,” says Moldover, adding that bright, hard-working children are often able to compensate and therefore mask developmental issues until the later grades. Moldover says the development of the brain can fail to match up with the demands of the environment at all different times, so it is not uncommon for kids of varying ages who have never been evaluated to have concerns pop up on the radar in middle school or beyond.
While it is important to stay in tune with your child’s progress and thoroughly investigate concerns relating to academic performance, social development or any number of dynamics, Tayarani says she feels schools are increasingly equipped to identify disabilities, thanks to benchmark evaluation assuming a more prominent place in the educational landscape. “Right now, schools are more data driven than ever. It’s more likely that a kid, for example, who is having difficulty reading will be caught a lot earlier on in the process,” she says.
The clear take-away in all this is the importance as parents or caregivers to know your rights and get the support necessary for successfully navigating the complex and emotional journey of raising a child who has an IEP. “It’s not a sprint, it’s a walk – a walk together and it takes time,” says Sinclair.
As the old saying goes, your kids don’t come with a manual – and that’s a realization most parents of a child with special needs understand all too well. From the first chapter, and all along the way, you have to remember everybody’s story, just like the IEP itself, is unique. It just has to be the right story for your kid.