Denied Access to Mental Health Records

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I found out recently that my Social Security Disability (SSDI) hearing has been set for February 2019. When I found this out, I contacted my attorney’s office to ask for a copy of my medical records since I honestly don’t even know what all is in them other than what my doctors have told me and what little is available on the online portals. I was rather shocked when they told me that they could give me the physical health records, but it is a HIPAA violation to allow me to see my complete mental health records.

To be honest, this bothered me. I’m not allowed to see some of my own mental health records? This doesn’t seem right to me. Maybe I could understand if I were violent or a real danger to others and they feared me getting pissed at what the doctors wrote and trying to harm them or something, but the closest I’ve ever come to violence is just having a meltdown and yelling at someone because I was overwhelmed (normally this has only happened at work places when I was put under a lot of pressure). Even yelling is pretty rare for me though. I am much more likely to just burst into tears, lock myself in the bathroom, or try to get away from the situation by finding another “safe” area where I can be alone.

Am I alone in being frustrated by the seemingly patronizing system hiding my own truth from me? Who else deserves to know my doctors’ real, honest perception of me more than myself? I’m not a child. I can handle knowing what my doctors really think of me and maybe knowing those things would help me in my own personal growth.

When Non-Profits Only Care About the Money

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On Facebook I shared a post about some tax changes that are being made to churches and non-profit institutions. The debate that started, made me think about my own experience working for a non-profit organization and I wanted to share a little bit of that here. For around 6 months or so, I worked for a non-profit religious hospital system. My job was to be one of the people in the emergency department who collected patient information (especially insurance information) and processed payments.

From the beginning, it was drilled into us that it was about the money. We were hounded to make sure we collected certain percentages of money from patients while they were still there in the building, whether they could afford it or not. We were encouraged to apply pressure to them to pay at least a percentage that day, regardless of their personal circumstances. Although patients could legally ask to be billed later, we were told to NEVER tell them that, and only offer that option if they brought it up first.

We were told bluntly that the hospital had to make sure to look like they were doing enough “public outreach” to keep their non-profit tax status, so when they did run public assistance programs we were told to advertise them when talking to patients. It became clear that they didn’t necessarily do programs for the poor because they CARED about them, it was so they could continue to get the tax breaks and other non-profit advantages. I heard so much negative talk there about Medicaid patients and the poor. I was also told flat out that the company was purposefully looking into opening more locations in areas where the people were more likely to pay, and closing locations where the populations were poorer.

One huge issue I had was that even when someone was brought to the ER and died, we were pressured to try to get money from their grieving relatives. More than once, those in charge actually chose not to tell family members that their loved one had passed away until AFTER we collected insurance information and copays/deductible payments. They would send us in, and we would know the family’s loved one was gone, but we were told to lie and pretend we knew nothing. This killed me to have to do. One time a lady begged me for information on her husband who was dead, and I couldn’t tell her anything. I also struggled to go up to a mother whose child has just tried to commit suicide and ask her for money. I felt like scum.

In the end, I couldn’t keep this job due to my own health issues, but I couldn’t have kept doing it with a clear conscience either.

How I wish there were sensory friendly hospitals!

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Recently I was admitted into the hospital after two trips to the ER in the same day. At the first ER visit they decided I just had a virus, but when I got home I got much sicker, so sick that when my husband was ready to take me to the ER again, I couldn’t walk on my own and even collapsed in our foyer on the way out. At this second ER visit they noticed my pancreatic enzyme levels were through the roof, so they admitted me for pancreatitis. Once admitted, after more testing, they realized I had colitis and a nasty case of C Diff (an intestinal infection) as well. So unfortunately, I ended up staying there three days.

This was my first time being hospitalized since I was 10. Back then I was hospitalized for one night after being hit by a delivery truck while crossing the road. I sustained some internal bleeding and nerve damage from that accident, but was extremely fortunate to walk again as the doctors told me several times. I don’t remember much of that first sleepover in the hospital except that I hated the IV, got to eat lots of popsicles and had my mom room with me for the night because I screamed bloody murder every time she would try to leave.

This last hospital stay I definitely remember well though. And at times I thought I was going to lose my Aspie mind there. Hospitals truly are sensory hell for us autistics. The constant beeping noises may have been the worst thing, especially the machines attached to me that would beep loudly and relentlessly every so often (and it always seemed to take way too long for someone to come turn them off, even though I knew they were busy). I could hear other patients’ machines beeping too, as well as the noise of everyone watching tv and talking in the hallway. That kind of constant stimulation is not pleasant at all for those of us sensitive to it.

In addition to the noise, there was the unpleasantness of fluorescent lighting everywhere (which is a trigger for many autistics and can give us severe headaches or migraines and make us dizzy and nauseated if exposed for long). Next, you can add the physical discomfort of being hooked up to things. Now, I know that I had to be attached to an IV because I was extremely dehydrated and needed IV drugs, so even though that was extremely uncomfortable (and I really wish they hadn’t put the needle in the crook of my elbow) I dealt with it and didn’t complain. However, when they came in to hook me up to a heart monitor and told me themselves there was no real reason to do so, I was irritated. Eventually I just told them to remove it, that I was refusing to wear it. I was kind about it and they totally understood since none of them knew why I needed one at the time.

Another thing I hated about the hospital is the fact that no one lets you sleep. I was constantly woke up for more shots, blood tests, equipment going off, people being loud, etc. It is enough to drive you crazy! Sleeping in those hospital beds is also extremely uncomfortable if you are a side or stomach sleeper (as I am).

Of course, I do realize that some of these things can’t be avoided. Medicine is necessary and so are machines and tests at times – to help with cases like the one of http://sideeffectsofxarelto.org/current-xarelto-lawsuits/ for example. However, I do wish there were hospitals made especially for people with sensory issues. Maybe some that do a better job of limiting noise and avoided hooking you up to stuff you don’t need. Maybe other kinds of lighting in rooms for those with autism or sensory processing disorders. I know I’m probably dreaming here and that the funding is seriously lacking, but it sure would be nice. Being in the hospital is hard enough for us Aspies just because it is so out of routine and nothing is familiar there, adding all this extra sensory stress can’t be good and I doubt it is conducive to healing.