On Being The Missing Middle: For The Love Of God, Someone Clean My Toilet
While today my bathroom got cleaned(ish), it had gone even longer than usual between cleanings, and at this point between my fatigue and my autistic executive dysfunction, it’s clear that this simply is not a chore I can do on a regular, or even semi-regular, or even not-so-regular basis.
Recently I went to two movies in the course of three weeks, despite the fact that every time I do this I afterward feel as if I’ve been mugged by the sensory onslaught, and today I feel as if I’ve been mugged four times as hard by cleaning the toilet. I’m a fucking rat’s nest, or maybe it’s a snake pit, of dysregulation, which won’t abate anytime soon and will still be with me tomorrow.
It’s not a thing anyone would even believe in unless they’ve experienced it, but ticket theory (a kissing cousin of spoon theory) is real, and it’s just a tremendously rare occurrence for my fatigue and my executive dysfunction to allow the issuance of a bathroom-cleaning ticket.
It’s not an option to turn to something like Home and Community-Based Services through Medicaid (which doesn’t even necessarily cover housecleaning anyway), because it’s really geared towards those who are eligible for more institutionalized care situations but have opted to stay at home. Oregon Health Authority, in fact specifically lists needing “daily help with at least two activities” as a qualifier.
That’s not me.
As has often been true in my disabled adulthood, I am a sort of “missing middle” in terms of support services on offer to people. There is a reason, beyond the less consequential things like why doesn’t this or that piece of software do what I need it to do, why my bio calls me an unsupported use case.
Anyway, I’ve just sent the following email to the contact information at Oregon Health Authority, with the subject line, “Alternatives to HCBS?”
I’m wondering if you could point me in the direction of alternatives to HCBS for disabled people who live independently but do not meet the full qualifications for HCBS assistance.
In my case, between my fatigue (still without a diagnosis) and my autistic executive dysfunction, I have profound difficulties with the more intensive parts of housework, e.g. toilet and shower (among other things). But I do not require (per OHA) “daily help with at least two activities”.
My fear here is that as has often been the case for me, I’m sort of a missing middle in terms of support needs and generally have nowhere to turn because everything is geared for no support needs or high support needs and not my sort of mediocre but nonetheless personally pressing needs, because as it stands things like my toilet necessarily go far too disgustingly long without being cleaned, because even when the fatigue and the executive dysfunction clear me a path, as I describe it, I feel like I’ve been mugged afterward and everything becomes dysregulated for days.
Thanks for any guidance or pointers.
At any rate, the point is that this probably was the last time I can clean my fucking toilet. So, my needs might be in the missing middle but they are also relatively pressing.