201 Comments Posted by dme

OK, I know these comments are a year old, but some of this is deliberate sensationalism at worst and unknowing misunderstanding at best.
These institutions were originally set up because it was thought they would help people...then they were overwhelmed by the enormity of the needs and lack of will to expend the resources needed to meet them.

As in any other profession, there were a few cruel and sadistic staff, others who "snapped" momentarily due to overwork and exhaustion, and the vast majority who came day after day to thankless jobs, doing the best they could, finding joy in a patient's tiniest achievement, taking patients home for holidays so they would have some semblance of a family.

But these were NOT death camps. Private experiments were not done just on some doctor's whim. We have forgotten the huge public health threat that so-called chidhood diseases used to be. My ex-husband nearly died of measles just 50 years ago. His older brother did die of measles. Many children ended up in places like these because of the high fevers and resulting brain damage that went with measles, meningitis, etc. So developing vaccines was imperative, and we have a very false sense of safety today.

Lobotomies were surgical procedures that doctors hoped would help mentally ill patients. In some cases, they may have. For too many, there were untenable side effects. I can't recall ever hearing of a patient, whose only problem was mental retardation, having a lobotomy. They did NOT involve cutting off the top of the person's head and taking out parts of their brain to see which were essential! (although they were horrific procedures--but then what brain surgery isn't pretty horrific, at least to the layperson?) And now brain surgery is done for some patients with severe seizure disorders, surgery that seems in some ways similar to the principles behind lobotomy. In medicine there are many advances that come only after tragic errors.

I have worked with more than a few people who did die very sad deaths...but not until they had lived much longer, in comparatively good health given their underlying disabilities, than doctors ever predicted they would, thanks to the hourly attention and meticulous care provided by the staff too many of us are too eager to condemn.

Sorry so long.

I have worked with older adults whose teeth had all been pulled during long years of living in state mental institutions. Some of my co-workers were of the opinion that their teeth were pulled because they had repeatedly bitten staff at the hospital. This may have been true, although I tend to believe that the extractions were due to the severity of decay in their mouths. This was before widespread fluoridation of water in rural areas, and when poor people did not have access to regular dental care. In a "normal" patient, with financial resources, perhaps a skilled dentist could have restored at least some of the teeth. But in an uninsured, nonpaying, combative, disturbed patient, extractions were easier (and probably all the state would pay some minimal amount for). And as sad as it is to not have teeth, I have seen people whose general physical health, behavior, entire persona changed for the better after their teeth were pulled. In an ideal world, there would have been intervention long before it got to that point, but unfortunately we do not have an ideal world, and most people DO do the very best they can, with the resources they have, in the situation they're in.

If one chooses to see this photo as representative of horrific events, that is what one will see. I see an institutional-looking bathroom in an old abandoned building. Just as I can imagine a staff person abusing a resident here, I can also imagine a staff person patiently working with a resident, day after day, trying patiently to teach the resident to rub the soapy washcloth just once on his/her arm, to take one little step toward greater independence, and celebrating every little achievement. While there may have been a few voyeurs among staff, who found gratification in watching residents bathe, most staff would have been teaching, protecting, and providing care.

I think everyone agrees that large institutions are not desirable. However, one thing they have/had "going for them" was an economy of scale. The individuals with developmental disabilities whose needs could be met at lower cost in the community were discharged from institutions 20-30 years ago (if they were ever in institutions at all). The individuals in institutions today or who have been discharged in the last 12 or so years have multiple serious problems--the mental retardation itself, inability to walk, lack of intelligible communication, often orthopedic complications, feeding difficulties, various medical problems, seizures--and very intense needs. Ten years ago I worked on setting up community placements for the last 12 people who were still institutionalized from my agency's region of the state. The usual cost of their community placements was above $12,000 per person per month, well over twice the cost of their care in the institution. Community homes are cheaper in the aggregate, but not necessarily in any particular individual case. Some services also became much harder to access. The institution had a dentist who was used to working with these patients. It was very difficult to find a local dentist (the community placements were of necessity two hours away from the institution because the closure agreement specified that each person be returned to his/her "home" community) willing to take the time necessary to treat them.

Almost all of the mechanical restraints I have seen used have been used to protect individuals from their own self-injurious behaviors. I have seen people pick at sores until bone is visible. Or an eye or lip destroyed. Or head-banging until stitches are needed because what the person seeks is the attention given in a hospital emergency room.

Two aspects of moving these residents to the community were especially hard. One was reassuring the staff at the institution that we would provide the same loving, considerate care they had provided for the thirty or forty years the person had been with them. I know abuses happened, but I don't think abusive staff were the ones insisting on coming to the new home with the person to make sure it was everything we had promised in the discharge planning meetings, and who made videos for us showing how they handled mealtimes, baths, transfers, and all the other little aspects of the person's day, as well as making sure we knew favorite foods, favorite music, etc.

The other especially hard thing was the families of the individuals. Forty years ago we**the "experts"**had told them that the right thing to do was to place their child in the institution, because they would get special care by people who knew how to help them, it was best for everyone, etc. Now we were coming back to them, after they had either finally made some kind of peace with that placement or were still agonizing with guilt over it, and telling them, no, the institution isn't the right place, we were wrong. It was the only home most of them had ever known, they were with staff who had been there for years in a small town where they were part of the community, but the LAW said they had to leave there and come live among strangers who didn't know them. And yes, we had been wrong before, but this time, the families were supposed to trust that we really DID know, and that this would be better. For some, probably most, families, it was. For others, I'm not so sure.

in regard to babies at institutions...yes, some children were admitted very early in life (I am speaking in general terms, not specifically about Pennhurst). Sometimes when a clearly disabled baby was born, the doctor advised the parents to not get attached, to "put the baby in a home," and have another (hopefully normal) child. Sometimes the parents already had several older children, or had another child or two in quick succession after the disabled child, and felt that they could not provide for all their children, and that the disabled child would be better off at the state school where he would get "special" education and training (this is when there was no special education in public schools for severely delayed children and no community support services to help families keep their children at home).
Also, many developmentally delayed children are very small for their chronological age as a result of the syndrome that caused their disability. Some children the size of an average three year old may be seven or eight years old...so they might have been considered "babies" for a long time.
One of the things my work with adults who grew up in institutions taught me is that the real miracle is that so many babies are normal. Just one tiny defect on one microscopic part of one chromosome can change the person's entire life, yet the vast majority of the time, everything goes right.

I know of cases where, as part of a consent decree in a class-action suit brought on behalf of patients at institutions like Pennhurst, certain sections of buildings (or entire buildings) were so far out of compliance with standards for active treatment and patient care that they were ordered permanently closed. Because of the deficiencies, any services that did take place in such areas could not/would not be paid for by Medicaid, which was the funding source for most patients. In some cases it would have cost too much to renovate the area to bring it into compliance, in other cases it was concluded that no matter what was done, the area could not be brought into compliance, and it was sealed off to ensure that no one had access to it.