I'm a fairly healthy, low-maintenance patient — but I can't find affordable access to the treatment that works for me.
by Katy Rollins
As much as I love to keep things light, funny, and entertaining, sometimes life is neither light, funny, nor entertaining. And if you happen to have ADHD, you are likely to have even less of a sense of humor about life’s frustrations, when they smack you right upside the head.
One of the realities of being a small business owner in the early stages of growing my businesses is that I do not have health insurance. I’m relatively young and relatively healthy, aside from occasional bugs that the kids might cart home from school, the little germ incubators. My number one goal, once I have a little more money to spend on myself, is health insurance.
After all, I do have ongoing medication needs relating to my ADHD and anxiety. I’m in what you might call maintenance mode: I really just need to check in with a prescriber every 6 months to make sure everything’s working like it’s supposed to. I’ve chosen not to engage in therapy for a while because I feel pretty good about my life, I’m coping pretty well with life’s challenges, and I need to try out life with no training wheels for a while. Plus, I can’t really afford it. But I do need my stimulant meds and antidepressant medications to keep me rolling along as productively as possible.
This morning I went to my current prescriber, at the community mental health center serving the area I used to live in. I no longer live there, so I’ve kind of been limping along, avoiding making many appointments, because without insurance, I frankly can’t pay for them — since I don’t live in their service area, they technically can’t offer me sliding scale fees. I make a payment every time I go in, and send money for the bill when I can, but it’s very challenging. Today, I went in and they said that if I didn’t pay $140 right there and then, I would not be able to meet with my prescriber.
What's more, it turns out that I was only there to begin with because of a scheduling error on their part. I knew I wasn't due for an appointment until fall, but when the reminder call came I went in as directed, not wanting to run afoul of their no-show policy and lose my ability to make appointments in the future. (I don’t joke around with things like that — having ADHD, there are a million reasons that I could end up forgetting an appointment, so I make sure I show up when I know I’m supposed to be there.) So I didn't have $140 and had to use a credit card to pay for an appointment that I wasn’t even supposed to be at.
It gets better. (Insert sarcasm here.)
My prescriber, in the course of my appointment, apologized for the scheduling mistake — it wasn’t his fault, truly, but I appreciated it — and then suggested that I contact my local community health center, because they would certainly have sliding scale services to offer me. The minute I left his office I dialed that center, only to be told that they do not offer sliding scale services, and that an appointment for medication assessment would be $240.
They gave me the numbers for two other clinics in my city that might take new patients on a sliding scale. But I know they are unlikely to take me on as a client; two people I know have recently tried to make appointments and have not been able to get what they needed within any sane timeframe — and those people have insurance. So the takeaway here is that if you have insurance they will see you sometime this decade, but the wait is long, and if you don't, your option is the ER. And the state mental health hospital will only see you if your condition is acute and dangerous.
You read that right: I’m a fairly mentally healthy person who functions in society, needing only 40 minutes of time annually from a provider in order to maintain the excellent level of self-management that I have achieved over the past few years — but I cannot find affordable access to the care that I need in order to treat my ADHD and anxiety.
I would have also been subjected to an unnecessary medication assessment, with the possibility of having the provider screw with my medications — meds that have been working for me for a long time now. I cannot emphasize strongly enough how much stress the idea of having to break in a new prescriber causes me. I like my prescriber. We have a good relationship. But I am very medication-sensitive and our early relationship was a little tricky, as I had to demonstrate that sensitivity through trial and error. After my appointment, the thought of starting that process over again sent me into the near-panic zone, an anxiety that I feel would have been very reasonable under the circumstances!
Lest I veer too far down the road to panic and darkness, I will share with you my next step. I contacted my local mental health advocacy group, and I have asked them how I can get involved in advocacy for mental health care access. I communicated the skills that I am able to put to use for them, and I really hope they will let me help out. I know I’m not the only small business owner out there with this same issue, and I know I’m not the only person out there with ADHD and anxiety who may be having this issue. I feel that if I have skills that I can use to help advocate for others and for myself, that it’s important for me to do so.
And now...back to the sewing machine...no, wait, the bookkeeping...no, wait...