What's An Institution?

Light blue silhouette of a bird, the Twitter logoWhat kinds of living and working situations for disabled people count as “institutional” and what counts as “inclusive” or “community-based?” What makes one approach “institutional” and another not? Which produces the best results for disabled people? Why were disabled people institutionalized so much in the past?

Since it seems like people are still defending institutions, even talking about having more of them, I think it's important to be direct about the issue. Unfortunately, it’s hard to find clear, simple talk about it.

That’s why these live Tweets caught my eye. They are from a presentation by Ari Ne'man. President of the Autistic Self Advocacy Network, given at a conference in San Francisco, Developmental Disabilities: An Update for Health Professionals. He makes some great points:

People Love “Facilities”

Exterior photo of a typical nursing home
It is one of the fundamental questions to ask about any approach to helping disabled people and their families … Should we fund services to individuals wherever they are, or fund the building of “facilities" where they can go to get services?

Since at least the late 19th / early 20th century, the answer has mostly been “build a place”. In the last 20 years or so, the pendulum seems to be swinging very, very slowly in the other direction, away from nursing homes, day treatment centers, sheltered workshops, and the like, towards directly funding the individual personnel and equipment supports people need, in their own homes and workplaces.

Aside from the functional and ideological arguments for and against disability-related “facilities,” it seems to me that “facilities” have certain specific qualities that make them appealing to non-disabled people, even though almost no disabled people really, truly like them, especially if they are aware of the alternatives.
- Building a facility is something to do for disabled people, when you’re not sure you actually know what to do for them. When there’s a facility for “that” kind of person or condition, people feel like something is being done, the problem isn’t being neglected.
- They look impressive, professional. When they are new, bright, clean, and modern, it makes you feel like you are giving disabled people “the best”.
- You can give them cool names. You can name them after a politician, a philanthropist, or even yourself, especially if you are dead.
- They have definite price tags, so it’s simple, (if not easy), to raise money for them. That is party because donors and supporters find it easy to comprehend what they are supporting. Unless they have direct experience with disability issues, most people would rather give money to build the “Awesome Disabled People Center” than to fund “personal assistance services for X number of people”.
- Facilities are easy to quantify. They have X number of “beds”. They have Y number of “slots”. The project will create over Z new jobs!
- Facilities generate lots of jobs, at all skill levels, even after they are built … administrators, comptrollers, supervisors, direct services staff, cooks, and maintenance staff.
- Facilities are great for “revitalizing" small, struggling towns. Either they refurbish abandoned buildings, or add new, impressive visual landmarks to neighborhoods.
- Facilities grant the illusion of safety, order, and control, which many families of disabled people crave … and probably some disabled people, too, though advocates like me don’t like to think about that.
Look, I know that “one size doesn’t fit all”. I know some disabled people might “need” more institutional services. Obviously, there have to be some. But no matter how nice you make them look, facilities almost always suck. If not right away, then more certainly as the years and decades go by.

Plus, once you build them, it is very, very, VERY hard to change your mind and do something different with the money. Facilities take on a life and purpose of their own, separate from the needs and preferences of the people they are supposed to serve. Personalized, directly funded services, on the other hand, can turn on a dime, and a change for one person only affects that person.

Just say no to “facilities”.

More Important, Not Less

Center for Medicare Advocacy

Medicare plans to stop approving purchase of speech devices … electronic machines that generate speech for people who can’t speak due to a disability … for people in health care facilities like nursing homes. Picture Stephen Hawking with his voice synthesizer.

The rationale, it seems, is that such facilities provide total care, so it’s less important for the patient to be able to communicate.

The same rationale use to be used … may still for all I know … to refuse purchase of electric wheelchairs and mobility scooters for people in nursing homes and other institutions. Someone in such a facility doesn’t need to be mobile in an institutional setting, because the institution does everything for them.

In both cases, this is a twisted rationale only a penny-pinching bureaucrat could come up with. I’m not knocking penny-pinching bureaucrats. It’s not horrible for someone to ASK whether these devices are still necessary for people in medical facilities. The problem is that other people with some knowledge of health care and disability (including disability rights) should answer that yes, they are necessary. In fact, they may be more necessary since even the “best” institutions tend to curtail patient mobility and healthy activity, and communication is the patient’s best protection from neglect, abuse, or medical error.

Let me say it again … it’s fine to question what some might see as “sacred cows”. But the accountants need to sit down and shut up when the items they want to skimp on are found to be, in fact, vital.

Click the link above to write to your Members of Congress.

A New Disability Show, Maybe?

Last week, I wanted to know, “Where are the disability shows?” I assumed that there weren’t any disability-themed TV shows, or shows with disabled characters in the works for the coming year. Then yesterday, I noticed some Tweets from the Television Critics Association summer tour, discussing an upcoming new TV show called Red Band Society.

Red Band Society TV show poster
Although it doesn’t really seem to be intended as a show about disability, it looks about as close as I have ever seen to my dream disability show, about people with various disabilities living together in some kind of care institution. The kids in "Red Band Society" show seem to be more “sick” than “disabled”, but I have a feeling the two kinds of experiences on may overlap on this show.

It's interesting that none of the TV critics I follow seem to have recognized it as a disability show, as they did right away with some of last year's new shows. It seems more like they are expecting the show to deal with health care issues. Or, maybe they're not sure what the show is really going to be about.

Polseres Vermelles
I hope Todd VanDerWerff's prediction that the show might fall back on tired illness / disability tropes doesn't come true. The premise of this show is so promising ...

It's also worth noting that the Fox show is a remake of a Spanish / Catalan TV show called Polseres Vermelles, or "The Red Band Society". I'm hoping to find a way to check out that series, too.

More On Institutions

Alexa Ura and Corrie MacLaggan, The Texas Tribune - June 3, 2014

There’s one thing that I’m sure is a factor in the ongoing debate over institutionalization and other more “sheltered” service models. People become personally invested in justifying positions that make their own choices look better. Parents of disabled children who have chosen institutionalization may have some good reasons for concern about the move away from large institutions, but I’m sure it’s also hard to hear again and again how fundamentally wrong the the entire approach is … the approach they at some point chose for their son or daughter, thinking (and hoping) it was the best. It’s hard enough to admit you have been wrong about something for years. It’s got to be especially awful to digest the possibility that a choice like this might have been tragically, horrifically wrong.

I’m not sure there’s an equivalent motivation on the other side. Yes, those of us who favor the end of institutions and segregated services feel personally about it. Some of us have been in such programs ourselves, and broader approval of our choice to leave bolsters our confidence that we made the right decision. Those of us who are disabled but have never been in more restrictive programs see others like us living such radically different lives, and we personally fear that we could end up there at any time, unless such places are phased out and closed for all time. I don’t think the self-justification motive is as strong with us, though, than it is for the pro-institutional “side”.

The other problem is that it's almost impossible in traditional journalism to deal with the more complex reasons why otherwise reasonable individuals support models that most people, on some level, feel are at best grossly out of date, and at worst cruel and corrupt.

In case you missed them, check out some other recent posts about institutionalization:

Institutionalization Followup

Amy Ellis Nutt, The Star-Ledger - May 25, 2014

This article is a great counterpoint to my post yesterday about the practice of placing significantly disabled children and adults in large institutional facilities. You might say that Ellen Petroff’s parents present the other side of the argument … that their daughter, now 44 years old with multiple disabilities and health problems … needs 24 hour care from a very specific set of people which they can’t conceive her receiving anywhere but where she has been for 30 years. New Jersey's Developmental Disability program definitely needs to answer their questions more specifically than to say, “We’ll find a place”.

However, I think the article and everyone in it is missing a few basic truths. For one thing, moving anywhere after 30 years in one place is scary and risky for anyone, even those who don’t have disabilities. For another, I see hints that some of Ellen’s health problems might be the kinds that develop later in life, due to age but also to inactivity and maybe slightly complacent health care. Was she hospitalized so many times because her medical problems are just that severe? Or, could some of them have been avoided with slightly better, more creative health care? How do we know that her health won’t improve moving to a smaller group home, closer to her family, maybe with new aides and doctors able to approach her care with a fresh take?

Finally, I think the Petroff family’s concerns point to one of the insidious affects of these highly centralized, sheltered, sequestered institutions; they breed a sense of dependence and indispensability. Ellen’s parents can’t conceive of anyone else looking after their daughter. They may be right to worry, but that calls for especially thoughtful preparation, not reversing the trend towards closing institutions and helping disabled people live integrated lives in their own communities.

I do think choice should play a role here, but who’s choice? Can Ellen make a meaningful choice? How relevant are her parents’ wishes at this point? Plus, there’s the specific choice to stay where you are or move, and then there are the additional choices that could open up for Ellen if she chose to leave the institution.

This is a transition period, and transitions are always hard. That doesn’t make them wrong.

How Could We Have Thought It Was Okay?

Photo of Sunmount Developmental Center, large four-story white building.
Sunmount Developmental Center, Tupper Lake, New York
The other day, I was reading an interview with the creators of one of my favorite TV shows, "The Americans" … which has nothing at all to do with disability … and this passage in the interview jumped out at me:

“ … it turned out that her parents had this huge secret: They’d had a child that they prepared to receive in the home, and it turned out the child was severely disabled. At that time, what you did was put the child in a home and told the kids and everybody that the child had died, so that’s what they did.”

The person saying this was talking about a real-life family that included a famous psychologist who lived during the 20th century. The child was his and his wife’s. The TV writer cited the example to illustrate how seemingly normal, stable families can harbor really massive secrets that profoundly affect everyone in the family, even if the secret is never discussed or formally revealed.

What struck me most, though, was the sentence:

"At that time, what you did was put the child in a home and told the kids and everybody that the child had died, so that’s what they did.”

I won't go into the long history of institutionalization in the United States, except to say that in some ways it is not a very long story and fairly recent as these things go. Suffice it to say that as the quote above indicates, there were several decades in the 20th Century when it was considered progressive and humane, if not precisely desirable, for families to place children as young as infants in large institutions that were a strange mix of hospital, residential school, and prison. It was a practice widely endorsed and recommended by doctors and accepted or embraced, (I don't want to speculate too much on which) by families. Many, if not most of these children would live out their entire lives in these institutions. Others would be fortunate enough to leave and go on to carve out real lives for themselves. For further reading, I recommend Mike Earvin's blog, Smart Ass Cripple, in which he often refers to his time in an institution, which he calls the Sam Houston Institute of Technology, (S.H.I.T.).

A few big institutions still exist … some of them in the exact same buildings purpose-built in the early 20th century. Small "group homes" thrive ... the large institutions' direct descendants, which are either a vast improvement, or an unfortunate half-measure, depending on your point of view. Yet, we have clearly passed the era where regimented, medicalized, institutional “care” was considered “the best thing”.

Still, it seems to me that we as a society haven’t fully grappled with the moral implications of this period when it was considered a difficult, but enlightened thing to do to place your newborn infant in what amounted to a massive hospital, more or less for life, and to some degree or other write the child out of your family’s life. We sort of know that it was a horrible thing to do, but we tend to excuse it by implying that people didn’t know better back then.

It reminds me of how we sometimes explain slavery … incorrectly I believe. We think of it as some kind of temporary mass psychosis that was a terrible shame, but what you gonna do? We are a more just society now, humanity progresses, people are smarter, etc. But really, were people all that different only 150 years ago? Were people that much more ignorant of disabilities 50 years ago? Or was there a more deliberate ideology at work?

So here are the questions I'm thinking about:

Did most people in the "institutionalization" era sincerely believe it was the best, most humane way to treat children ... later adults ... with significant disabilities? Or, was there always a buried understanding that it was wrong somehow?

Did medical and educational professionals truly believe that institutions could provide better care and upbringing than families?

Were medical and educational professionals at the time genuinely uninformed about certain kinds of disabilities. For example, did they sincerely believe that intellectually disabled people were in some way "less than human" ... deserving of humane care, but not human rights?

Did families really the marketing put on by these institutions, that they were highly competent, humane facilities providing top-notch care? Or, did many or most families kind of know on some level, before Willowbrook, that institutions were pretty terrible?

If families did harbor hidden fear and shame about institutionalizing their disabled children, what kept them from just bringing them home? What arguments did they hear that counter-balanced their more negative feelings about institutionalization?

If the expense of care at home was a factor, why is only recently that people are starting to suggest that the same money spent on brick-and-mortar institutions should simply be given instead directly to families?

If people either lied to themselves en masse, or severely misunderstood the nature of disability, then what sins of self-delusion or ignorance might we be committing right now against people with disabilities? What will our grandchildren and great-grandchildren look back on in our practices, and wonder how we could have been so cruel or stupid?

Are there thought processes and precautions we can use now to prevent ourselves from making fundamental mistakes in this area that we would be ashamed of later?

Please comment below. I would like to know your thoughts on this. It seems like a really big deal to me that is rarely discussed. Let's discuss.


I debated whether to mention this, but what the hell ...

The other thing that got me thinking about the institutionalization era was reading the current Atlantic Monthly cover story, "The Case For Reparations: An Intellectual Autopsy", by Ta-Nehisi Coates. Coates reviews the history of slavery in America, and argues that it wasn't an isolated practice, but rather was succeeded after its abolition by other policies and practices deliberately designed to promote white supremacy, and that the effect of these policies can be measured today in the economic lag still experienced by African-Americans. This article, and piece on it by Matthew Yglesias at Vox.com on how the economics of "reparations" might work prompted me to wonder if disabled people as a group have ever suffered a legally-sanctioned, systemic robbery on a scale that might, theoretically, call for some sort of systemic reparations. And I hit on institutionalization. I don't know where to go with that, but it's something to think about.

Rule Britannia!

British flag
Owen Bowcott, The Guardian - March 19, 2014

The UK Supreme Court has come out with a powerful decision affirming disabled peoples’ right to "liberty", regardless of their care needs. It is a decision that sounds similar to the United States Supreme Court’s Olmstead decision, but the language here is clearer and more easily understood by the average person, while Olmstead is strong, but constantly needs to be explained.

According to The Guardian, "In a test case on the conditions under which three individuals are living, the supreme court said that their medical conditions did not entitle the state to deny them their human rights."

The Deputy President of the UK Court said:
"If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person."
She added:
"The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.”
Traditionally, care and liberty have been regarded as competing priorities. The more care you need, the less liberty you can expect. The less care you need, the more liberty you have. This UK Supreme Court decision, like Olmstead, appears to break that connection.

The UK court says that instead of competing with the duty of care, ensuring greatest possible liberty is part of the duty of care. A person's need for care neither requires or justifies reduced liberty.

For example:

If you are a quadriplegic and need help with most of your daily routines, things might come to a point where care providers decide that the safest, most efficient way to make sure your needs are met is for you to be in a nursing home. Even if that’s not what you want, there are ways that you can be forced into this “choice”. Your care provider might refuse to provide care in your home, saying they don’t feel you are safe in your own place. Funders might decide that they would rather pay a nursing home fee than for home care visits. And if you have any kind of cognitive impairment, there will certainly be at least some “experts” who will believe that you should be more supervised. In all of these cases, the assumption is that you can either be free, or safe and cared for, never both.

This UK decision poses the radical but common sense notion that having freedom and choice is part of being cared for. Being able to live in your own place if you want iis as important as good nutrition, being able to go to the bathroom, and being free of physical abuse or neglect.

Unlike Olmstead, which didn’t spell out any particular actions to implement the principles it affirmed, this decision will apparently require each individual's care situation to be reviewed annually, specifically to determine whether the disabled person is being ensured an appropriate amount of personal choice and liberty.

I have to admit that I love that the pronouncement was made by the “Baroness Hale of Richmond”. It probably doesn’t impress most British people, but to me it sounds so much cooler and more weighty coming from “Lady Hale”.

Horror Story ... Good News Story - Followup

Advocacy topic icon
Michael Virtanen, Associated Press - February 9, 2014

Here is some … perplexing? … news to update the apparently goodish news about how New York State is investigating and prosecuting abuse in institutions for people with developmental disabilities. It seems that New York State’s new abuse investigation agency is being … or appearing … cagey about reporting data on the cases that have been reported and especially on the progress and outcome of cases. Officials are citing confidentiality for ongoing cases, but my sense is that nobody is really looking for results on individual cases, by name, but rather statistical reports on what is being done with reports of abuse.

Oddly enough, having worked adjacent to similar types of state agencies, I wouldn’t be surprised to find out that the apparent stonewalling is largely a matter of miscommunication about what, exactly, outside advocates want to know. Perhaps families involved are asking for information on specific cases … information that is too soon to report. Maybe that is being conflated with other advocates who just want to know not only how many calls and tips have come in, but how many of them have been deemed unfounded, how many are under investigation, how many are being prosecuted, how many care providers are on suspension, how many have been fired, etc.

The other thing I wonder about is whether the new agency got a flood of transparently false, malicious accusations. Maybe not. But, the same kinds of employees who could happily stage “fight clubs” with developmentally disabled group home residents might also feel comfortable reporting innocent coworkers they just don’t like, or took the promotions they wanted, to the anonymous tip line. Like I said, maybe it’s just my nasty, misanthropic mind, but I do hope the agency has some effective ways to quickly identify entirely false claims.

Either way, whether the agency is hiding something or not, they should figure out a better way of regularly reporting data on their work.

Horror Story ... Good News Story

CBS New York / Associated Press - February 6, 2014

First a bit of context, then a few thoughts on this story.

The news segment mentions the New York State Justice Center for Protection of People with Special Needs. It is a relatively new program set up because of several years of shocking stories of abuse and neglect in New York State’s Developmental Disability service system, mostly cases of workers in group homes physically and / or mentally abusing people with developmental disabilities, including physical and cognitive impairments. What emerged from these stories was an apparent situation where problems were kept “in house”, and care workers were given the same kinds of appeal and job protection rights as, say, a unionized autoworker. In other words, “dealing with” abuse or neglect accusations too often meant reassigning someone to a different position, or a different group home, or putting them on paid leave until a review maybe did or maybe didn’t get to the truth of what happened.

I explain this because this case is a good sign that the new Justice Center is working. Someone apparently saw a cellphone video taken by one of the workers, and this person … presumably totally unconnected with and unfamiliar with the DD system ... was able to report the incident to the Justice Center, leading to real, consequential action. As terrible as the practices themselves were, this should in one sense be seen as a “good news” story.

As for thoughts on the story …

Not for the first time, I struggle to resolve whether this is mainly a story of individual evil and depravity, or about the kinds of incidents that crop up again and again in institutional care settings like group homes and nursing homes. I think it’s both, but news stories tend to focus almost exclusively on the individual evil, without questioning the system that allows it to happen or even maybe encourages it. The incidents I describe above that led to the Justice Center being set up were rare examples of a mainstream newspaper … The New York Times … actually connecting the dots and pointing out systemic failures.

The father of a developmentally disabled person who condemned the individuals but essentially defended the institution kind of broke my heart. If you make the decision to go for institutional care for a loved one, it’s got to be awfully hard to acknowledge that maybe the system itself is fundamentally flawed. Seeing individuals within the system do horrible things is terrible, but if you can maintain you faith in the system, then you can convince yourself that everything is going to be okay.

I’m not at all suggesting that this kind of abuse happens in every group home. I’m not suggesting that most group home workers are horrible, amoral, or cruel. What I am suggesting is that there are aspects of any hierarchal, bureaucratic institutional care models ... in which caregivers essentially have power over the people they care for, and the people with disabilities are “under” their care ... that help peoples’ worst instincts to flourish. I think it’s inherent in the institutional model itself. Abuse can happen with home care provided in your own house or apartment, but the power structure there is much, much simpler and easy to cut through if necessary.

On a surface level, it makes me ill to see that the group home in question is named, the “Independent Group Home Living” program. What a misuse of “Independent Living”.