If a child with hearing loss is scoring at or above the level expected for her hearing peers, it’s time to celebrate (and graduate)! But why does this seemingly joyful milestone cause so much anxiety for parents and professionals? Why do children who are “doing well” still struggle sometimes, and what can be done about it?
My colleague, Teacher of the Deaf Megan Myers, describes it this way, “Children who do well are like a jar full of marbles. We might say the jar is full because the marbles fill the jar to the top, but if you pour in some sand, you can see where there are still gaps to be filled.” There are certainly quirks and missed skills that do not show up on standardized tests. But what’s the line between “doing well enough” and “doing well”? What do we do with a high-scoring child?
Parents and professionals in these situations often express one of two different concerns:
He’s doing really well but I know there are still gaps. I still see things that are not quite perfect, he still struggles sometimes.
She’s doing really well but are we really ready to give up the supports offered by an IEP? Isn’t more always better?
When we think about these high-achieving children, there are two things we need to consider: accommodations and modifications.
ACCOMMODATIONS are things children who are deaf or hard of hearing will be entitled to throughout his life by virtue of having a documented, federally-recognized disability. These are things like repetition of directions, FM system, preferential seating, etc. Those will be covered on a 504 or IEP.
MODIFICATIONS change the content and curriculum and are only applicable for a child who has DOCUMENTED needs in those areas. So if a child is scoring at/above his hearing peers in all domains, there is not legal justification for modifications. Legally, IDEA is not designed to help your child be “the best” (or even his/her own “best”), but just to get that child to the minimum functional level to access school content. If that never happens, then the child stays on an IEP with modifications to curriculum and various therapies and supports. If it does happen, then the school district has fulfilled its obligation under the law.
So we need to ask ourselves, how is this child functioning? If he is functioning within/above normal limits compared to age-matched hearing peers, we cannot justify modifications to the curriculum. There are some parents in these situations who will then say, “Let’s write self-advocacy goals!” or “Let’s write organizational goals!” in a scramble to retain a high level of services. Services MAY be necessary, but again, we cannot just resort to, “All other IEP goals completed, let’s fish for something just to keep that IEP.” If you want to add goals like this, you need to DOCUMENT SOME DATA. I cannot justify putting on a “Will take adequate time to complete class assignments” goal UNLESS a) I have documentation and data over time that the child is not doing this and b) [and this is what people forget] I can document that the child is not doing this in a way that is MEASURABLY DIFFERENT than typical peers.
A child forgetting a homework assignment is not clinically significant just because he has a hearing loss. It is clinically significant if he is forgetting at a rate or in a way that is different from hearing peers that I can document and attribute to the HL. You don’t get IEP goals for “problems” that are really just being a regular kid and learning the ropes of keeping yourself organized and functioning more independently in the classroom. If a child with hearing loss occasionally misses a direction in class, but we can document his ability to follow multi-step directions with a variety of concepts and no visual cues in quiet and noisy situations (via tests like the concepts & following directions subtest on the CELF, for example), then we can chalk that up to being a kid and not due to the HL.
The American special education system is based on a failure model (you have to fail/fall significantly below average to get services, and stay significantly below average to keep services), and we can debate whether or not that is a good idea, but that’s a meta-discussion for another day. Legally, this is what the school is required to provide, and I can understand that from a programmatic, financial, large-scale standpoint, even if it’s harder to swallow when its your own child in question.
I also understand that it can be terrifying to let go of the security net of IEP services, but we need to think long game here. We are preparing children for success in college and in life, neither of which come with an IEP.
We are preparing children for success in college and in life, neither of which come with an IEP.
So what’s the take-away?
If the child is testing at age-appropriate levels and maintaining this performance in the classroom, the school is not responsible to provide modifications/interventions under IDEA. Your child is still entitled to accommodations and communication access under the Americans with Disabilities Act.
So if you are continuing to see gaps that aren’t showing up on standardized testing, you have to document them, document them, document them. Have some data to show that your child needs help, if she indeed does. Standardized tests certainly don’t capture everything, but a hunch is not enough to justify services.
But ask yourself, if a child without hearing loss was having this issue, would it be worth intervening at this level? Is this a hearing loss thing or a kid thing? How can we pick that apart?
Always aim for independence, and think long-term. Life doesn’t come with an IEP.