Yesterday I shared what it’s like to answer questions about Aidan and to watch him go through a variety of testing to qualify for services. In brief, it sucks. Here, sassy and sophisticated Mallory tells her story from the perspective of an adult with a disability. I’m fortunate she’s working in the field of youth transition to make the world a better place for kids like Aidan and she has the ear of decision makers around her.
“Are you able to get on and off the toilet by yourself? Any trouble urinating, or with your bowels? Do you wear pads or anything, or just for your menses?”
These are just some of the invasive questions that pop up during an “eligibility assessment” while trying to get healthcare services as a young adult with “special healthcare needs.”
On a typical morning, I wake up, head into the kitchen where I hit the buttons on my Keurig one cup coffee brewer with my eyes half open and settle in front of my Macbook to pour over emails and celebrity gossip until I can see straight. Usually this is followed by a shower, and all together an hour or so of blow drying, hair straightening, eye lining, lip-glossing, and perfume spritzing. But not today. Today I’m playing a part. Sort of.
In my life, my illness is not at the forefront. My LIFE is. I power on day-to-day, working to change the healthcare system for others in similar situations. I network, I spend time with my family, I get coffee with my friends, I rot my brain with reality TV, I do things every other 25 year old does. Then at the end of the day before heading to bed, I happen to get hooked up to an IV for 12 hours when I sleep. No big deal. Another day in the life.
But when it comes time to prove eligibility it’s ABOUT being sick- not able to be independent or successful. It’s not about proving how hard you have worked to achieve a level of good health and independence. It’s playing a game, to see if you “win” the services you need to ultimately be independent… and alive. One thing I’ve found that helps me to greatly improve my life around the home is being able to turn my home into what’s called a “smart home”. It’s entirely possible to Automate Your Home with electronic devices, and these are especially useful in becoming independent.
My phone rings, and the “assessor” tells me she has found my apartment. When I hang up, I throw my coffee mug in the sink, and stash my pink jewel encrusted iphone under the pillow on the couch. As someone who meets the “income requirements,” I certainly shouldn’t have things like an iphone. Ditto for my Macbook, which I quickly put to sleep and close off to the side so it won’t draw attention.
Today there is no eyeliner, no mascara, and no lip gloss. I haven’t showered, my hair surely is not perfected, and I’m wearing the same tank top and shorts I slept in.
I open the door for her, and my first thought is offering her something to drink (as any good hostess would) but I hesitate. Is that the right move in “the game?” If I can get her a glass of iced tea, then surely I can get some for myself… which means I can probably cook my own meals… which would probably deduct points in however the scoring of this sick game works. I don’t offer her anything.
We sit down at the kitchen table, and I wait for her to initiate conversation. I direct her to a plug so she can plug in her laptop where she will undoubtedly be recording all of my answers. I feel like I’m on a very unrewarding game show. I sit quietly, secretly hoping that some of yesterday’s mascara has successfully created dark circles under my eyes to make me look more like someone with “a condition.”
Finally we start talking. I keep my answers short and simple, only emphasizing the negative- like how hard it is for me to go up and down stairs, that of course I am able to shower by myself, but not forgetting to mention the complex dressing change that must be done after.
I know the script by now, and after awhile I just start to go with the flow, and even make light of it, in my own head, thinking of how I could joke that the only assistance I need while grooming is the occasional wax or highlights I just can’t seem to perfect myself.
I continue to choose my words carefully however, and avoid sounding too articulate.
“Do you have all your own teeth? Are you missing any?”
I raise an eyebrow, and answer “Yes. No….”
“That’s wonderful!” She says, as if having all of one’s teeth is an oddity, but considering the region, and that the assessment is done by “elderly services,” I suppose maybe it is.
I start to follow it up with “Actually, I just whitened them last night, and they are fabulously straight since I just got my braces off in November…. Which I paid for myself, and are completely paid off!” They absolutely do not want to hear that. I actually bite my lip so she can’t see how good they look.
“Have you had to see a foot doctor at all? Can I look at your feet?”
“Um… no, and sure.” I swiftly cross my ankles, hiding the one foot that is emblazoned with a tattoo, and point my toe of the other foot at her. My self applied turquoise nail polish glitters.
“Oh, you have little nail polish on it, and your hands too!” I immediately regret the touch up I did the night before, then get over it. It’s exhausting trying not to be yourself. Can’t catch it all.
The questions continue, and she begins explaining to me that my current insurance company cannot be billed retroactively, and I will have to fill out yet another application and apply for another program to prove I’m eligible for services I have already been receiving.
My brain starts buzzing, and the words on the application become a blur. “Wait… what?” I ask, striving for clarification.
“Do you want the number for the Department of Health & Human Services? I have the number for all of them!” She offers, as though telling me I just won the Powerball so none of this even matters.
“I have all the numbers.” I shrug. “I just am trying to understand what I need to do.”
We spend about twenty more minutes of me trying to clarify what I am asking, and her trying to answer. She then promises me she will relay the information to all the parties who need to be notified since once again, I’m not even sure I get it, but in a last ditch effort to not spend my entire day unshowered, sitting with this stranger in my house, I tell her I do.
Finally she prints another sheet of paper and with her arms raised says “Well! Of course you qualify for a nursing home level of care! But I know you choose home! Home home home!”
I cock my head to the side wondering if she really just said that sentence as if it were some deranged cheer they learn in “eligibility assessing school.” I try to keep my jaw from visibly dropping as I sign my name on a line under a checked box that said “I understand my options within this program and choose to stay in my own home to receive care.”
“Yea. I do.“ I said bluntly. It had been two hours and my act of playing nice was wearing off. Playing sick and tired I could do (since the tired part was not acting), but pretending this whole process isn’t the most unhinged, psychologically damaging thing I’ve ever seen…gets old. “And we’ve worked HARD for the past 25 years to see that this is the way it could be.”
She drops the cheerleader act and gathers her things, and wheels her laptop-carrying suitcase to her car. “I hope everything works out for you. Good luck.”
“Thanks,” I replied. “Have a good day.” And I meant it. We were both back to just being human again. And I could take a shower.
I close the door, and shake my head. Of course I choose home. I choose independence, grad school, work, and success… I choose having a LIFE. And I can only hope that some day, that is what the system is based on, being rewarded for being healthy and successful, instead of deprived of services that make it possible. Maybe someday.