Obstacles to Accessing Care
The obstacles we have to overcome in order to access care is unacceptable. I'm in the US, please share your experiences if you live elsewhere.
Finding care -service providers, both primary care AND mental/behavioral health, are generally ignorant about neurodivergence in general, and adult neurodivergence, women neurodivergence, non-white neurodivergence, and comorbidity especially. -databases have limited information, much of it boiler plate and suspicious (specializes in ADHD and autism my ass). -providers generally require a phone call (let's be real, many multiple phone calls) in order to set up an initial appointment instead of everything being coordinated online which you would think would be easier but noooOOOooo. Also no one answers the phone and they will never call you back. If they call you back it will be at the worst time, also calling me is an act of violence against me, I need to emotionally prepare for a phone call, make a script etc. Also I don't answer unknown numbers and they call back from a different number, then leave a message and then don't answer when you call back. -if an email is provided, no one ever gets back to you -still often telehealth isn't offered which is insane -can you speak to them between sessions, text or email them? -do they provide medication management? Will they treat you like a drug abuser every time you request a refill or feel they aren't helping as much anymore? Do they know about all the different options, the latest research, additional medications that can be used in conjunction? -the next available appointment is 6 months from now -assessments are only performed by a small set of providers. You don't get the questions beforehand to prepare and they don't want you to ask clarifying questions(??))???)?)?)??!!). You are forced to make a quick black and white decision for a complex nuanced concept. These decisions are used to judge you and control your access to support and care. -oh yeah there isn't any support anyway -is this service covered by my health insurance? ¯\(°_o)/¯ if it is, do they do the paperwork? Or will they make you pay and then fill out forms and call your insurance to coordinate reimbursement? ( Real experience I've had)
Maintaining Care -if you miss an appointment or want to reschedule too close you'll be charged
- in person care means dressing, hygiene care, planning, transportation, interacting with strangers -did you remember to fill out the forms and send them in? Or bring them? -remember everything you needed to bring up, have written down notes and remember where you put them or that they exist, remember what what you wrote down means. -are they dismissive? Are they going to judge you? Are they going to understand what you're saying the way it sounds in your head but never gets translated out of your mouth? -are they aware of all the latest research? Do they understand the nuanced ways comorbidities interact and can obscure symptoms? Do they understand masking? Do they know what questions to ask that you don't know to think about?
This world is so unforgiving and structured to make our lives harder, it what's feels like a knife to my chest whenever I have to deal with care providers who gave zero accommodations for the people they servehas if they truly understand nothing about the conditions people are living under. There are so exceedingly few qualified providers, if I want any care at all I have to put up with it.
What did I miss in my rant?