Saturday, May 6, 2017

How AHCA trickles down to social justice issues

Let's talk justice.
Here's what it's not. Justice is NOT that I, as an advocate for my son with special needs, can get him the services necessary to obtain equal access to educational material. Because I'm a squeaky wheel he has an FM system. Because we asked, he'll have braille. This is great for us, but were we not squeaky wheel parents asking for an interpreter, he'd never have gotten an FM system, his language wouldn't have advanced this much in a year.
So the analogous parent who doesn't have the resources to fight? The school will assume no FM system is necessary, saving a buck or two but ultimately decreasing that hard of hearing child's ability to process what's happening in the classroom.
But guess what COULD make injustice even worse. Loss of federal funding to schools through the new AHCA bill. See, there's this little line on my son's IEP form that says if he qualifies for medicaid, I allow the school to bill his medicaid account for health services received at school. Screenings, etc.
While my son doesn't qualify for medicaid, the school relies on that extra money. It allows their special education budget to expand to meet more of the needs of the students.
Notice, from my first long paragraph, not ALL the needs of students. Funds are still stretched thin.
Folks, TALK TO YOUR SENATORS. Let's not let the new AHCA bill pass.
And if they don't listen to stories about special needs kids, let's talk to their pocket book. WITH SERVICES early on, my child will live a self-determined independent life as a DeafBlind adult. [He has Usher Syndrome, a genetic condition unrelated to prematurity that will take his sight sometime in his second decade or beyond.] We expect him to have a job, live apart from us,etc.
WITHOUT SERVICES EARLY ON, we see a different story. He'll be very frustrated in school. He'll keep falling behind. And this is before his vision declines. He perhaps will hate writing and reading because they were never made clear to him, and literacy is key to his success moving forward. Without services, we can see a future where he'll be dependent on welfare.
Dramatic? Extreme? Perhaps. We hope not to find out. We do know one thing, though. Early interventions make a huge difference. We've seen this in our kid.
Our child will be fine. He lives in privileged. He has parents who will go to whatever extreme needed to get him services he needs. But there are other kids like him, kids on the margins. Changes to their lives early on, getting the services they need at school, will make a huge difference. School budgets are tight. This small change will have huge ramifications. Let's not fail them!

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