Parents of disabled kids are always on the internet yammering away about something tragic or poignant. Some are more elegant than others (see the exceedingly beautiful essayhttp://velamag.com/superbabies-dont-cry/), but all parents of “specials” experience our children in a pointedly unique way. To put some corporate jargon spin on it, we are afforded more opportunities to “syngerize” than the typical parent. We live with the paradox that we are constantly called upon as the biggest expert on our child, but we must constantly consult with experts about our child. We find ourselves both having to explain our child while having our own children explained to us. In other words, we have some shit that we have to work out.
In my case it gets stranger. I had a child who was born physically disabled with a congenital vision disorder and thus she was lucky. Without this diagnosis I would not have been connected with early intervention services through her pediatrician. We started an “infant stimulation” program when my daughter was three months old. There was a protocol and all I had to do was provide transportation. But she quickly grew from an interesting baby into a less-engaged-than-she-should-have-been toddler and the protocol changed. No longer were we working on her vision disorder. Now we were addressing a diagnosis of autism and intellectual disability. Like I said, we were lucky. It may have been months more for before we received such a diagnosis. In the case of autism time is everything: the earlier the intervention the better.
About that diagnosis: I hope things have changed, but in 1997 I was handed a psych eval, a pat on the back, and a “yep, she’s retarded, too” from the pediatrician. Before you get upset, I can assure you that the R-word was the least of my worries. Having a kid with a disability means then and now that you have to learn how to quickly become development expert. And it isn’t just the child’s development I am talking about. You now have to learn how to develop the skills necessary to write a huge grant proposal in search of the funds needed to pay for their services and procedures. In the US this is called the search for Medicaid, which we will get to in a minute. But for now, imagine being in your mid twenties with twins (yes, she has a neurotypical twin sister), a strained marriage, and a new learning curve that is not detailed in 99% of those parenting books that everyone suggest. It’s pressured and I have my disabled daughter to thank for teaching me how to get things done under pressure. It wasn’t just that she needed help. There was an urgency to get for a kid who screams hours at a time and occasionally jumps from windows, running full speed into oncoming traffic. It’s a special kind of motivation that few parents get to know. Joy.
About those treatments: in my daughter’s case all of these were considered “optional”. Why? Glad you asked. There is no standardized treatment protocol for autism. You kind of get to figure out what you want to and need to do through countless social service appointments, school district appointments and medical appointments. If you are lucky you become quickly acquainted wit “Benefits”, “School” and “Medical Services”, aka. the holy trinity of autism. Working with all three is mandatory and they feast off each other. Worse, trying to peg them down to commit to who would pay for what ended up being less of an art and more of The Art of War. This is how you fight this war.
First, get a diagnosis. The first step in any hope for treatment is proving that your child has a disability. In my case it meant getting her deemed disabled so that you can receive the blessing of The US Social Security Administration and their Disability Determination offices. So much side eye at Social Security— just so much. Close your eyes and imagine your single worst experience at the DMV. Now imagine all of the clerks throwing human excrement on you. It’s that bad. Here are some very real things I have seen at the Social Security office: an employee ripping up someone’s application in front of their face; someone in line having a seizure who WOULD NOT LEAVE because it would means she would lose her place in line; numerous physical altercations between the public with security and the public. Fun, fun times.
Second, so you got a disability diagnosis, now what? Glad you asked as you are well onto your next journey: the Medicaid application process. Before we go any further you need to realize that while Medicaid is a federal program, it is facilitated on a state-by-state basis and your application will be completed at a local human service level. Many times the Medicaid application includes a food stamp application and other assistant and entitlement program applications. The mass of humanity and human misery experiences at your local human service offices cannot be understated. You will see a level of human suffering that you were sure we Americans would never tolerate. Guess what? We do and we are good at ignoring it. But now you don’t get to anymore.
Are you done with this step? Computer says no. So just think, if, and this is a big if, your disabled child actually is determined to be disabled and you fill out that grant and your child receives Medicaid coverage, you now to get to find and work with a local service coordinator. Why? Well you want that child to actually receive services. Here’s a list of things I have actually done at a local social service office: sat on a worker’s desk until I saw a supervisor; cried uncontrollably; lied, aka, stated that I was a lobbyist so I could speak with the director. That last one worked and I would do it again if I had to. You learn that you need to lie or go ignored because the system is not set up to attend to human suffering. Like your HMO or your local bank, it is set up to attend to it’s own persistence as an institution. That’s what bureaucracies of all types do, so don’t worry about lying to it. It’s not human.
About Medicaid again, and get used to it cause you need to understand you will never get over Medicaid (your kid will really need it), not every old Medicaid type will cover the extent of treatments for autism. What you really, really need is a Medicaid waiver. Write that down because getting a waiver isn’t like getting regular old Medicaid coverage. If it were most families with autistic kids would just quit working and dive deep into poverty. You might think I am lying, but these treatments quickly hit six digit marks on an annual basis. Thankfully the decision to become poor was already made for me. I was poor. I was “qualified-for-food-stamps-and-took-a break-from-paying-my gas-bills-in-the-summer” poor. I tried for years not to be poor but it is nearly impossible for parents like me to find work and employers sympathetic enough to address that constant assessments, doctor’s appointments and school meetings that you need to attend. I know that there are families out there who somehow manage two jobs and home therapy for their kids—those people are heroes. But they are also villains of a sort. Most people are not capable of doing this because they need sleep and food. For example, say you want a home therapeutic visit for your kid. Well, most home therapy families I’ve met have two parents with one substantial income. One of those parents must be focused like a laser on the disabled child. If your significant other makes well under $250K a year, then you don’t get to be one of those people who say things like “Since we’ve renovated the basement for little Cory/Kirby/Colby’s therapy I just can’t stand all of the drywall dust! It clogs up the Dyson something terrible!” You don’t get to be one of those people because you can’t afford the renovation or in-home therapy.
Third step: Get denied for Medicaid. When you attempt to get a Medicaid waiver you will almost always be denied. That is a gift. Why? Because being denied means you have a right to appeal. Look, before you cry understand that Medicaid waivers are rare but not impossible to acquire. You will now appeal. Your Medicaid appeal isn’t exactly a federal criminal appeal, but it ain’t easy. Heck, I have done it twice. Why? Because, I moved from one state to another and, guess what, it doesn’t transfer from state to state. Joy! Have I spent hours on the phone over these things. After my first denial I cried to any and every attorney who would listen to my story of, “I have three kids, one is disabled and she could get treatment if only she had this Magical Medicaid Waiver…” Cried. I mean like sobbing to strangers with a pen in hand to take the name of any attorney that they would pass me off to. One person referred me to his cousin, a man who worked for a very large multinational company that my state did not want to lose. That company would occasionally do pro bono work for the community and he happened to have a son with autism. I called, he answered and he took my case.
This saint of a human being came over to my disgustingly messy house with three cats, one dog, three kids and a strained marriage. He looked through all of my daughter’s assessments and built a beautiful appeal for her. Hey, and like magic, the very day before my hearing, the state found a Medicaid Waiver slot for my daughter. This magic trick becomes annoying. The State seemed to have a rabbit in that hat this time. It may have been lucky, but I think it was the prestigious corporate letterhead on my daughter’s attorney’s correspondence that forced that State’s hand. I don’t care. We all got what we wanted.
When I moved out of the state some 15 years later, I would have to reapply for a Medicaid waiver. There was no denial this time but my daughter was instead placed, as many states do now, on a “waiting list”. Again, these treatments cost money and the State is obliged to pay for them, but they just don’t want to. So, I could have waited but I didn’t. This time, I applied for every type of Medicaid waiver that she qualified for and there were a few to chose from. She met the criteria for one particular waiver that is designed to keep people out of institutions and living in their communities. She was approved. No one facilitating this waiver really was happy about this as the waiver is really intended for elderly people. But there were spots, so we took one. And the minute we took that spot magic happened again. Out of nowhere a place for the appropriate waiver for Intellectually Disabled adults suddenly appeared. Again, I will never be able to prove that she would still be on a waiting list today had I not applied and she qualified for the elderly waiver. Once again I don’t care and let’s just say I don’t believe in magic.
Fourth step: become a legal expert without a law degree! One of the things you begin to understand is that people have all kinds of rights. In the case of your child you need to take some of the away. If you don’t she can and may refuse things like medical treatments for conditions that could severely harm her. Simple things like infections may develop because unless you are her legal guardian she can refuse medications. But I have gone through the expensive legal process to become her legal guardian. As a result I act as her signatory and can tell the doctor to give her things like birth control shots or medicine for infections. This is nothing new: of the paperwork involving her care has and will continue to involve me. Every five years, my daughter has a Medicaid redetermination (as if somehow she will no longer be disabled). Every year we have to write a plan for services. Every year the service coordinator makes it very clear that we don’t have to have services through the local governmental service agency “if we choose not to”. I am involved and will be involved in these plans and understanding her rights as a disabled citizen because there is no other agency that will coordinate her service plan for Medicaid. At this point in tem it is only me.
When it comes to services, it’s not like it is going to one huge buffet: I don’t have a lot of choices and my daughter has even fewer. So it is particularity insulting when service agencies call their vital services “optional”. They are not optional they are urgently needed, more so because most cities are operating at a deficit already. I always wonder how many people, not being able to navigate the rough waters of medical bureaucracy and a child with a disability, simply give up
That’s it for now. I will spare you being subjected to a “service coordination” rant. I will simply state that there is nothing quite as dehumanizing as having to explain to a 24 year old who is new to all of this why you feel that it is medically necessary for your child to get the windows in her room sandblasted because she can’t stop from pulling down blinds or curtains from her windows. That 24 year old doesn’t understand that although you’ve tried several different varieties and methods of blinds and window coverings, all of which she will go over with you in painstaking detail, your daughter cannot stand to keep her pajamas on at night. She’s autistic and your doctor has explained to you that this partially due to her sensory issues which many autistic kids have. And while you are diligently addressing this sensory integration disorder via the Occupational Therapists’ Wilbarger brushing protocol, it may not be working so can’t you please, please help me get this window sandblasted so that no creepy person is looking at my naked autistic daughter? Please?