201 Comments Posted by dme

Maybe, instead of the evil staff picking the color that would make a patient even sicker, the person who used this room happened to really like the color and was allowed to choose it for the room's walls.

"Places like this" certainly did not make people "even more insane for the insurance money" because there was no insurance money to be had. A patient with insurance would go to a private hospital, not a state facility.

Even regular hospital floors have "treatment" rooms. My son was hospitalized for pneumonia when he was 18 months old, and they took him to the treatment room to start an IV. They didn't want me there (saying they didn't want him to associate me with the treatment) but I refused to leave (I didn't want him to think Mommy had abandoned him to strangers). Neither of the two nurses could get the IV line inserted and so they were going to put it in his head. I said "no way, at least not yet" and asked them to call down to the ER and have an ER nurse or EMT come up to the floor to do the procedure. They agreed to this, and the ER nurse got the line in on the first try (I also used the same request when my 80-year-old father was hospitalized and was becoming agitated by a nurse's unsuccessful attempts to start an IV--people who practice emergency medicine seem to have special skills with IVs). If I hadn't insisted on staying with my son, and he had come out of that treatment room with an IV attached to the top of his head, he wouldn't have been the only one needing a treatment!

This made me think of the bathrooms in my elementary school and kids climbing up on the toilet seat in one stall to look over the partition to catch the person in the next stall "in the act." (maybe we were just a strange bunch of kids--we also thought it was cool to sneak into the opposite sex's bathroom after school so that we could say we had been in there).

As for the lack of doors--that's much more understandable after you've had to crawl under a few doors to free a person who was able to lock the door but lacked the manual dexterity to unlock it.

I've known a number of people with autism who had a particular fascination with pipes (turning valves, removing fittings, putting things inside, etc.). The fascination seemed to increase geometrically if the pipes could also gush forth water. Even better was a pipe or fixture that could gush forth water that could then be kept from going down the drain. :-) Without close supervision of bathrooms, a facility could keep a full-time plumber busy just unclogging toilets and sinks.

In housing for people with developmental disabilities, many of the residents need training in personal hygiene/toileting skills. Other residents will "play" with the contents of the toilet if there is not a staff person to keep them from doing so. Sometimes there are medical reasons for needing to monitor a patient's urination/defecation.

Just like with so many other facets of mental health care, one cannot make judgments just based on an isolated picture. There are usually reasons for things being the way they are. And the reasons are not to torture people, violate their rights, or invade their privacy.

Oh yes, the "poor tortured people who never got a decent life"! Life in the community with so-called "normal" people is not a cakewalk for someone with mental illness or developmental disabilities, either. When I've been eating in a restaurant with some of the people I work with, I've heard insensitive, RUDE comments along the lines of "Why do they bring *that* out in public? We shouldn't have to look at *that* while we're eating. Don't they know there are places for things like *that*?"

A couple more examples of how charges of "neglect" are more often related to noncompliance with regulations than with actual patient harm:

I had secured a home to become the community residence of four adults who were virtual lifetime residents of an institution slated to close. Funding was in place to make needed structural modifications, purchase appliances and furniture, a van for their transportation in the community, etc.

Although they had significant orthopedic and medical problems in addition to sensory deficits and severe/profound mental retardation, we wanted to have an open kitchen so that the residents could participate in some meal preparation commensurate with their abilities. The fire marshall and one state licensing board came in and said that we had to close the kitchen off from the rest of the house due to the residents' disabilities.

Because each of the people used a custom wheelchair and had a 24-hour positioning schedule with side-lyers and other devices, we chose to furnish the living room with mat tables and the positioning devices. Then we were cited by another group for having "institutional" furniture and floor plan. None of the residents could sit in a regular sofa or chair, and we did have some chairs for visitors, but they said we needed a typical living room sofa, coffee table, etc. We eventually prevailed on that as the regulators got to know the people better, but were cited for the kitchen's enclosure on every review. There would have been no community residence at all had we not enclosed the kitchen. As it was, the residents were being driven down the interstate on the last day the institution had been open while the fire marshall was making his final inspection of the new home, and we were all on pins and needles, just praying that he would issue our certificate of occupancy before they arrived and found themselves homeless. The fire marshall also required that in addition to the standard two exits, each of the two bedrooms have a direct exit to the outside. This was so that if there was a nighttime fire, the residents could be safely evacuated in their beds rather than having to take the time to position them into their wheelchairs. Of course we also had sprinklers, exit signs, emergency lights, an alarm wired directly to the fire department, etc. We were not allowed to refer to the exit ramps as "porches" or "decks"--they were purely "egress ramps." On this, we were cited for not having any swings or planters or other "homelike" furnishings for the people to enjoy (but had we put such items there, we would have been in violation of the fire code and therefore "neglectful" of our residents). So it's not even just that there are multiple standards with which to comply; it's that one regulator requires one thing and other regulators demand different, mutually exclusive things.

On another review at a different home, we received a very serious citation because a bottle of medication was stored improperly. It was a controlled substance (Schedule IV) but was inaccessible to any of the residents, so no "harm" was done. But the citation, on its face, sounds like the bottle was open on the dining room table and being passed around during dinner.

We also had conflicts regarding use of antidepressants. A lady who had been with us for years had been diagnosed with depression and treated by one of our psychiatrists. When her case was reviewed, the reviewed concluded that we did not have baseline data that warranted the use of "behavior-controlling/altering drugs." We argued that the medicine was not to control her behavior, that depression was a medical condition, and that the medication was to treat the illness, just like a blood pressure pill or thyroid pill. We lost, and had to taper her medication, document symptoms of depression as they re-emerged, and then re-start her medication. Even our argument of "ok, we agree, we messed up, but don't make her go through this" did not help us. We did monitor her mood very closely, to document the tiniest observable change, so hopefully we got her back on her antidepressant before she suffered too much.

I've looked at so many pictures of abandoned hospital auditoriums recently that when I went to vote at my neighborhood school today, I thought *it* looked oddly different, with all its signs of active use by a bunch of active children.

When those of us who work/worked in the mental health field talk about patients and signs like this, we are not in any way intending any disrespect to the patients or to their memory, if they are now deceased. We are sharing what it is like, how things have changed, how things still need to change, trying to cut through some of the sensationalism around mental health care and discuss the reality of it. It is in NO WAY intended to be demeaning to the person. We do not "blame" the patients or resent the care we provide. We know that we would not have jobs if people didn't have problems, and if people didn't need help with daily living, they wouldn't be in our care. We know better than most people that it is the illness, not the person, causing problems. We want to help. There are always more needs than we can meet, so it is not in our interest to "force" treatment on someone who doesn't need it or to keep someone in treatment any longer than necessary (and today, with managed care, the problem is usually being able to keep someone in treatment long enough to really make a difference as opposed to just getting through a short-term crisis).

In addition to what BigEd (thanks, BTW, "impulse control problems" is what I was trying to say in my post on another picture and couldn't manage to remember it) and Lynne said about "extreme precautions," for me they would also include no rings, watches, or bracelets, long hair tied back, keeping an "escape" route between the patient and myself, and having a means for requesting assistance if I needed it. Sometimes we had to assign two staff to work with one patient in especially extreme cases.

I would imagine that "violent" wards used to see much more violence than today because there was so much overcrowding and there were no medications to help reduce aggressive behavior.

Most patients in a state hospital, especially in a "violent" ward, were not "fine" and just in need of "a little help." I care very deeply about each person I have worked with, and try to always focus on his/her strengths. But that doesn't mean I can ignore the symptoms of paranoia, delusions, extreme irritability, lack of coping skills, lack of ability to foresee consequences of their actions, etc. that require closer supervision and more intensive treatment. This sometimes requires involuntary commitment to a locked psychiatric facility.

When I worked with facilities that were closing, the closure took a number of years, with intermediate targets to be met on the way to final closure. The institution's population was gradually reduced, first by ceasing new admissions of children (under age 18), then by ending all new admissions, then by setting up community placements for the current residents. The residents with the fewest and least complicated needs would be placed first. Population also declined due to patient deaths--many of the patients had very complex physical needs in addition to their mental health/developmental needs. As people moved to their new community homes, the remaining units would be consolidated, with more and more of the campus being closed, until finally the very last patients moved to the community (in some cases it is part of a closure plan to move some patients from the institution closing to another state institution that is still open). There were court orders involved, so there was regular oversight by a court monitor as well as by various state agencies and the legislature. The last, and most difficult-to-place group, became part of a special legal "class" that provided additional funding due to the cost of their care in the community. At the very end, it really was a case of "Will the last person here please turn out the lights."

I love the perspective of this shot! When I start at the bottom of the photo and scroll upward, I feel like I'm walking down the hall (or conversely, backing away from something if I start at the top and scroll down).

Personal items weren't taken from patients to be mean or to make them feel bad. It was done for safety reasons, to prevent access to anything that could be used as a weapon against oneself or another (belts, drawstrings, shoe strings, razors, glass containers, pocket knives, any mouthwash or perfume that contained alcohol--yes, many people do drink mouthwash if that is the only alcohol available).

Many, perhaps most, patients came to the hospital with next to nothing in the way of personal possessions. Often they had nothing other than the clothes on their backs. A person ends up in a state psychiatric hospital because s/he is unable to live in the community and has no other place to go.

On several occasions I have responded to crisis referrals and gone to the individual's home to obtain needed personal items for a hospital stay. Usually I ended up at a local store to buy what s/he needed for a few days because there was nothing remotely clean or wearable in the person's home. The rest could be provided by the residential site or obtained from thrift stores, but I wanted him/her to have some new things, things that had never belonged to anyone else before. It came out of my own pocket, even winter coats and shoes if that's what was needed. No one asked me to do it, it wasn't part of my job, no one expected it, but it needed to be done, one human being to another. If it was within my ability to do, then it was my responsibility to do. I think most staff feel this way.

One thing that's very important to remember is that not everything we read is true. Even things in textbooks.

"Inmate" is a very old, archaic term for people being treated in a mental hospital. In the decades since it faded from common usage in that sense, its meaning has narrowed to refer specifically to a person confined in a jail or prison due to either being charged with a crime or having been convicted of a crime.

Personally, I find it offensive to even refer to persons with mental illness as "they" and "them." Terminology like that reinforces the idea that people with these types of problems are somehow "Other" and that "we" who are not so affected (at least not at the present time) are different from "them" and we can therefore not be concerned about patient rights/treatment/housing. As long as "they" live somewhere away from us.

Oh, to be young and idealistic, knowing it all and out to reform the world! Then reality intrudes, and you learn how very little you know :-( (maturity is not when you finally know everything you need to know; it's when you realize how much you have left to learn)

The baths, the wrapping in sheets...we think those are horrible methods today, but at the time when they were in widespread use, they were considered state-of-the-art therapies. Of course, as with anything, there were some staff who used them coercively, as a threat or punishment. As wrong as that was, in most cases it was not because the staff were sadistic. They were overworked, underpaid, inadequately trained, and inadequately supervised.

Involuntary treatment in a locked facility is sometimes required for the safety of the patient and the community. Even in community settings, I have had jobs where I went to work every day knowing that I would be met with what, in any other setting, would be considered a criminal assault. The only question was the form of the assault. It might be having my hair pulled, getting a bite that broke the skin, being kicked, hit, punched, head-butted, pinched, scratched, having my clothing torn, having the interior of my car damaged in the course of transporting a patient, etc. Other patients have assaulted (even murdered) others in much more extreme ways, including arson. We cannot do away with institutions altogether. If we did, the only alternative for some patients would be jail. The symptoms are not the person's fault, but safety must be maintained while treatment alleviates the symptoms.

There are safeguards in place today to guard against "unfair" treatment. Individual program plans, behavior support plans, psychological services, human rights committees, mandatory review of all adverse incidents, oversight by advocates and guardians, required staff training in client rights, sensitivity, abuse and neglect all help to make programs more person-centered/client-focused.

As for leaving people as they are...if all you could do was yell/scream/cry, would that satisfy you??? Wouldn't you want help to teach you additional skills and to help you be more independent? Should we not help a child with autism learn to use a communication device, a picture exchange communication system, or some other means to better express his/her wants and needs? Should we really just say "that's the way he is, we don't want to change it"?

Or someone who has schizophrenia and walks around town all day talking to the voices in his/her head--should be not provide antipsychotic medications in an effort to help the person interact with others, maybe have a job or go to school? Should we really just decide that he should stay that way?

Most people do want treatment to improve their health. If a person has diabetes, does that mean that's how they are, and they should forgo treatment and stay that way? Even when a person doesn't want treatment, sometimes that refusal is a symptom of their illness. Often, people in a manic phase of bipolar disorder feel great--lots of energy, little need for sleep, exaggerated sense of their own abilities, etc. What they don't see is how they are alienating those closest to them by their extreme irritability and/or risky behaviors (spending too much money, driving recklessly, using street drugs, sexual promiscuity, etc.).

If we stipulate that institutions are undesirable, then we, as a society, have to be willing to provide and PAY for the costs of adequate community-based treatment.

Most patients with a mental illness or developmental disability, if they are sufficiently self-aware, do not want to be left as they are. They want to have their own homes, drive a car, manage their own money, have a job, get married, go out with friends...just like everybody else. Some of the most heart-wrenching words I have heard from clients have been from those with mental retardation who asked "Why am I like this? Why did I have to be born this way?"

A patient's records would not be given to the family upon the patient's death unless a formal request was made by the family. Medical records (including all of our own, not just those of patients with mental illness) belong to the doctor, therapist, hospital etc. that provides the treatment, not to the patient. While the records are *about* the patient, they are *owned* by the provider.

Although these records have patient names on them, they are not necessarily clinical records. They could contain the monthly bank statements for the trustee accounts the hospital maintained for each patient, with receipts for all the funds spent for or by the patient. Other possibilities--personal property inventories, correspondence from Social Security, etc.

Besides the people who smear feces because of their developmental level, and some others who do it for attention, I've also known people who used smearing feces to keep others *away* from them, as a means of self-defense. ("don't bother him unless you want poop thrown on you") But most of the time it just means the person needs more activities .