This is Day 21 of the Ali Family #AutismTruths – April 21, 2017
Dear Government Agencies – Federal, State and Local,
With as much frustration as I’m about to unload, let me start with a positive – as a parent of a teenager with autism, there is no where I’d rather live then in the United States. My son’s autism isn’t the only reason I’m glad to live in this country (I was born here), but it certainly is a crucial factor.
Although I and so many of my fellow Muslim Americans are experiencing a myriad of frustrations, aggravations, discrimination, hate targeting, violence and racial discrimination that are on the rise since prior to the election of President Donald Trump and even more so since his inauguration (which in no way even compares to what Blacks and Black Muslims have faced for decades) – I am still proud to live here and raise my children here.
Because in what little research I’ve done, I’ve not found any other country that compares to the United States in education, government supports, funding, medical help, research and therapies for individuals with autism. (Now, to be honest, I’ve only researched the United Arab Emirates and India as alternative places to live, but I’ve anecdotally heard a lot about other countries around the world. I think the U.S. and maybe Canada are where it’s at for autistic individuals.)
So, government agencies, I want you to know that.
I also want to state a simple fact: Getting government supports (Medicaid or otherwise) or filing for anything needed through a government agency for someone with autism is an exercise in frustration, confusion and anger. And, it’s often so difficult to understand and grinding in its processes so as to make it impossibly difficult upon the families seeking these supports.
I have one relatively benign example to submit today. Some other day I want to address Medicaid waivers. And, next year we will begin the process (as D approaches the age of majority – 18) to apply for his supplemental security income (SSI, like social security) benefits. I’ve watched several friends navigate this system with their autistic children. It isn’t easy by any means. I’m sure when we embark on that process, I’ll have lots to say.
But let’s get back to the subject at hand – D’s passport.
I posted this the other day on Facebook:
Keeping D’s passport up to date is important to us and a challenging task every 5 years. The rules on how the passport photo should be, making an appointment and appearing in person with him with a passport agent … all of it. I applied to renew his expired passport, waiting for him to turn 16 so that by law, only ONE parent would have to go with him, thereby eliminating the struggle of aligning D’s, my and his Baba’s schedules.
Now I get a letter from the U.S. Dept. of State saying please do it all again, including picture, because he needs to sign his passport form. He CANNOT sign a document due to disability. I have done my research, read up, appeared in person with him in front of a passport agent so she could bear witness to his disability — she told me to sign on his behalf. I didn’t see on the government’s website on passport info anything about DS 71. But hey, I could’ve missed the obscure language. But, the passport agent made no mention of it and said my signing it on his behalf was fine.
I’m arguing with the U.S. Dept. of State to get this taken care of without having to go through this again. They want us to do the whole process again and fill out this new DS 71 form where I bear witness to his disability that he can’t sign.
I bear witness?
I bear witness?
I’ve been freaking bearing witness for nearly 17 years to his disability.
Currently battling the Dept. of State. Determined to win. Oh, I’m bringing #AutismAwareness to your doorstep.
Today the call came – a little over 24 hours after I placed my call to them.
The lady on the line informed me that because D was now 16, he MUST write his own signature.
We went back and forth, with me firmly explaining, you know – autism, can’t write, has never written his own signature.
She kept repeating to me – Ma’am, the rule is that once he is 16, he must submit his own signature, even if it’s just a line.
Me: You do understand that means I will hold his hand and make him draw a line. What’s the point of that? He has a disability. He cannot read or write. And, what about this DS 71 form the lady from yesterday’s call told us about?
Dept. of State Lady – That is not the form you need to fill. I understand he cannot do his own signature. So yes, you’ll have to hold his hand to get him to write a line.
Me: What if he was incapable of even doing that? What if he was paraplegic or for whatever reason just could not make his hand function? Would I put a pen in his mouth and try to get him to draw a line like that?
Dept. of State Lady – (frustration with me growing) Ma’am – you will have to redo the application. Those are the rules. Get him to make a line in the signature part.
Me: (polite, but choice angry words) I don’t mean to take this out on you, but this is rather ridiculous. Your guidelines and rules on the state department website do not state anything about this – about how to proceed if a person is disabled. Yesterday’s lady says I need a DS 71. You say I don’t. That information wasn’t stated anywhere either. Who am I supposed to believe? And what about his photo? You’ve kept his original passport application with the photo I’ve submitted. I don’t have another one. Do I need to get another photo of him taken? Because that’s a nightmare – getting him to look straight, make eye contact, not smile, lips open, lips closed and so on. It’s very difficult for so many autistic people.
Dept. of State Lady – We have his original passport application with his photo. So, you don’t have to take another photo.
Me – But the letter that I was sent says I need to resubmit the application, another photo and the letter.
Dept. of State Lady – You’re welcome to take another photo.
Me – You heard me, right? I don’t want to have his photo taken again. It’s extremely difficult to do so.
Dept. of State Lady – Then don’t do it. I’m telling you it’s fine.
Me – Yesterday’s lady told me I needed a DS 71. You’re telling me I don’t need that form, and I don’t need to submit another photo although the letter I was sent says I need to.
Dept. of State Lady – Can I help you with anything else?
Me – Yes. I’d like an email address or somewhere where I can write a complaint and offer a suggestion. There must be a place where I can offer a comment for public record.
Yeah – according to her, there isn’t. No surprise there.
This is but a small, small story among many much bigger, much more frustrating, much more life-influencing and life threatening ones in the ongoing saga to get proper government support and navigate federal, state and local processes for our loved ones with autism. It’s never easy – none of it. Half of the time families don’t even know what supports are available to them, and the other half when they try to avail supports or other things, the hoops through which they must jump often feel insurmountable.
In the grand scheme of things, this isn’t the most frustrating thing we’ve dealt with, especially with no imminent travel on the horizon. But, it’s yet another example of how federal, state and local government agencies don’t have the proper protocols in place, or if they do, not all their agents and workers know them, causing unnecessary challenges for those for whom support and ease are tantamount.
Please. Make it better. Do better. Be better.
Respectfully and frustratingly yours,
Dilshad D. Ali