End-of-Year Blessing Inventory II

This is the second grand thing that happened to me in 2015, although the happening of it took several months.

Getting My Stuff Back

For two years, my personal possessions were in the grip of an illegal "landlord lien"; my erstwhile landlady was holding everything I owned for ransom, a story the telling of which will have to wait for the conclusion of litigation. This Spring, with the help of an attorney neighbor, I was able to spring those chattels. Friends and neighbors in Lincoln gathered forces and moved everything out of the rental's garage and into a casita owned by Jerry and Cleis Jordan.

Jerry and Cleis then went through the whole pile, assessing and photographing damaged things, and disbursing particular items per my instructions.  Hundreds of photos arrived in my inbox from Jerry's iPad, including such tragedies as the entirety of my unframed artwork fused into a damp chunk of pulp by water damage.

Dan and Ellyn Medrano then hired a U-Haul van and drove that and a truck from Albuquerque to Lincoln, where they packed up everything they could and brought it back here. Obviously, there is no room for a household worth of goods and furniture in a nursing facility slot, but I was finally able to specify what bits and pieces I wanted to have with me, and let the Medranos take the job off my hands of dispersing the rest to good homes.

(Image pinched from Ellyn's Facebook page)

I got most of my watercolors back, and I got my laptop back. I last saw my old Dell Vostro 1700 in February 2012, when I was hauled off to hospital in an ambulance, expecting to be back home in a few weeks at most. I had bought it in 2008 and loved it. Fast forward to May 2015: Dan rolled the dear old Vista beast to my room in its wheeled running-away case, and I was overjoyed. It wasn't just the machine I was glad to see, but all the data on it.

So blessings on my old friends -- Jerry and Cleis Jordan, Clara Farah, Pam and Mac MacArthur, as well as cleaner Joanna Brady and her husband -- and on my new friends Dan and Ellyn Medrano, for the humongous thing they did for me this year.

HIPAA: How Corporations Over-react

(Here's a caveat: Ladera is owned by Genesis Health Care Corporation, and they are yuuuge. They own upwards of 500 nursing care/rehab facilities across the country. It's safe to say that whatever rules are being enforced at Ladera in Albuquerque are being enforced in every other Genesis site.)

I have been reading about HIPAA again because of the ways in which this law is being observed at this facility, ways that sometimes seem contrary to the interests of the patient. The gummint has an excellent set of information pages for both professional patient care practitioners and patients themselves. Beyond that, you can easily access the text of the law itself, text written in the arcane dialect known as legalese.

Andy Weir, author of Martian, calls it "ghetto" format -- white background and black default font from wall to wall. It wasn't too bad when screens were practically square and resolution was lower, but today it makes reading a challenge, especially when the text in question is legalese. Well, it's the government. If they were to actually format this stuff for readability, some demented cloud of dime squeezers would descend on the Government Printing Office and demand that they stop wasting ems.

But I digress.

Our corporate overlords do not want to be sued. Even baseless suits by opportunistic families cost money and time to defend, and the publicity can be bad. A patient complaint can possibly launch an investigation by the state health department, and, if they come in, they look at everything, disrupt the normal workflow, and generally fray the nerves of staff at all levels.

Some of the rules they make, however, would make Jonathan Swift rub his hands with malicious glee, like the one about Foley bag covers and the hanging of Foley bags themselves. (A Foley bag is the collector component of a Foley catheter. The catheter is inserted in the incontinent patient's "Trump"). For modesty's sake, the bags come with snug denim covers that snap on. The use of these covers is mandatory, as part of protecting the patient's privacy.

The problem is, no cover is mandated for the four feet of tube between the trump and the bag. Foley bags must not be left resting on the floor; they must be hung on something, usually the bed, which means there will inevitably be a loop of tube where urine will collect.

So why isn't there a cover for the tube? What's the point really? It's legal foolishness. Or maybe it's a company rule as opposed to a state mandate, but it's no less foolish for that.

Now let's consider things I have questioned, the answer to which questions has always been "HIPAA!"

After three days of orientation, which means following an experienced-at-Ladera CNA around, a newbie CNA is given responsibility for up to 12 patients on a portion of a hall. In long-term halls, the population is relatively static, but in the skilled unit, where patients come from the hospital for rehab, the population is in constant flux. In any case, the newbie is responsible for hands-on care for their section. They can either remember everything they were told, they can refer to the patient's chart, an often unwieldy tome which may not be removed from the nurses station, or they can ask another member of staff. A nurse tells me that every CNA has a sheet (another piece of paper!) with up-to-date information about the patients in their section. I presume this information is supplied by the outgoing shift. The thing is, it is absolutely forbidden to leave anything lying about in public view that in any way pertains to patient information. Even what size of brief a patient wears.

Does HIPAA really say you can't have any patient info in the room with that patient? Hell no!

According to the Department of Health and Human Services website, the facility can post signs that say things like "Diabetic" or "Do not put to bed until 8 p.m." as long as the patient or their POA* says it's okay to do so. This permission can be explained and sought at the time of admission, when the secretary is explaining all the other terms and conditions to the new admit and their family. All this stuff could be posted on the inside of the closet door, which would protect it from the casual passer-by.

What's it to me? I just refused a blood glucose test last week. I'm not diabetic, and I don't need to be tested. Thing is, this was the third time a nurse had attempted to perform the test since I moved to this hall; the list of who is to be tested is enumerated by room number, not patient name (HIPAA!). The resident who previously occupied this room got the glucose tests. The third nurse checked my MAR** and, having confirmed that I don't get tested, scratched my name off the other list. Now suppose this happens to a passive resident (which I totally am not), or one with cognitive difficulties. It's harmless, I guess, but it's bound to have an insurance code attached to it, which means that mistake costs somebody money.

But HIPAA!


*POA = Power of Attorney, frequently used as shorthand to refer to the person holding that power.
**MAR: Actually, I don't know exactly what this stands for, but it's the list/history of a patient's medications. Each patient has a MAR which the nurse refers to when dispensing meds.

End-of-Year Blessing Inventory

Two grand things happened to me this year, along with a number of smaller positive events. In the run up to the end of this year, let me tell you about them.

Better Digs

Administration let me move from the room I was sharing to a private room. In the old digs, I had become chronically exhausted and I was unable to sleep because of the constant noise of televisions or hallway activities. There was no room for me to expand, to paint. Ventilation was poor. And this is what I could see outside my window.

So, in the middle of August I got the room I have now, with space for me to hang artwork and photos, stow my art materials, and actually decorate a little. It was a magnificent gift, and I am extremely grateful.


 After more than two years in close quarters with nothing but other walls to look at, I was ecstatic at being able to see grass and big trees, almost like having a little private park between me and the parking lot. I have a long view, traffic, people, and even rabbits.

And, after catching up on sleep, I was able to start an inventory of my painting supplies, but that's a whole nother story. Here in my own room with a view, I can close my door to block out the hubbub, and have privacy -- at least, as much privacy as you can get in an institutional setting like this.

HIPAA - Don't Get Me Started

The Health Insurance Portability and Accountability Act of 1996, or HIPAA, is a law that, in its early years, had laudable aims. Its primary purpose was to protect the rights and medical interests of people with stigmatized illnesses, most notably AIDS. Remember how AIDS patients were the lepers of the late twentieth century? Just twenty years ago homophobia was undiminished in all aspects of American society. The Reagan administration ignored the epidemic. There was no cure. You could lose your job if you tested positive. Or your insurance.

HIPAA came to the rescue. It gave AIDS victims legal recourse against any insurance company or medical institution that shared medical records without the patient's permission. And this protection extended to all medical records, whatever the disease or medical condition. (See http://www.hhs.gov/hipaa/index.html )

Times have changed. AIDS is treatable and we no longer tread in superstitious fear around its victims. Homosexuality is no longer the social stigma it was, despite the dying gasps of the hyperphobic religious right. The patients' "Bill of rights" is universally acknowledged in medical practice across the country. Patient privacy and patients' rights have been incorporated into the Affordable Care Act, a.k.a. Obamacare.

But HIPAA is still around, and it has mutated into something different from what it was intended to be. It's now the Medical Care Institutions Ass Coverage Act.

You can see how this came about. HIPAA put the tools for successful litigation into the hands of patients and their families. And that tool has turned out to be highly exploitable in many hands.

I live in a long-term resident care facility, what used to be called a nursing home. My paraplegia and the slow degeneration of my condition means that I need full-time care that not even assisted living can provide. I have been at Ladera for nearly four years, and I've had plenty of time to observe the effects of HIPAA on resident care and how things are done on da hall.

I will have to be careful when I talk about my life here; the corporate overlords are seriously frightened that I will say something that will get them in legal trouble with some other rezzie. Can Ladera Care shut me up? No. (See http://www.hhs.gov/hipaa/for-professionals/faq/206/is-a-covered-entity-required-to-prevent-any-incidental-use/index.html )  They can entreat me to not give the names of other patients, or post pictures of fellow residents, or post details of other residents' medical conditions; by doing so, they have covered their own corporate butt. I in turn will comply with those particular demands. No photos of residents. No real names. No medical revelations besides those regarding my own falling-to-bits body.

But I can and will talk about my life and what happens to me. And I will have some things to say about how HIPAAphobia has affected me.