Deinstitutionalization: It’s not all good

Deinstitutionalization is the term coined for the movement that began in the 1950’s to close down psychiatric institutional facilities and shift services to the community for persons with varying degrees of disabilities (but specifically intellectual and psychological). To this day, there is still a push (spawned by the movement) for the modern state-funded care facilities to close and for the remaining individuals to be placed in community housing; falling within the parameters of the home and community-based housing (HCBS) waiver (Iowa).

Past

In the latter half of the 19th century, psychiatric institutions were popping up all over the nation. Prior to this time, individuals with intellectual disability (ID) or mental illness (MI) lived out their lives at home with their families, were abandoned and left to orphanages, or wound up within the prison system. Post-civil war era political, professional, and social views regarding care for persons with disabilities were changing. The general consensus was that this population would be better cared for living where all of their needs could be met under the same roof—assuring that all persons had the access to modern treatment and medicine. Staffed with doctors, nurses, and homemakers, these institutions sought a holistic approach to address the needs of these individuals with disabilities.

By the turn of the century and into WWII, these facilities were met with great success. Families were no longer burdened with caring for disabled family members, as state governments allotted funds to these populations. Most persons with disabilities could expect to find themselves within these walls and spend the remainder of their lifetime there. “Out of sight, out of mind” evolved to be the adage for admitting people to these institutions. As WWII raged on and the U.S. became more involved, admissions to these facilities continued at a steady rate but employment was continually falling. The demand for war nurses, doctors, wartime manufacturers, and soldiers left these large institutions poorly staffed. Following WWII, it was coming to light just how badly understaffed and overcrowded these institutions had become. The conditions were conducive to high rates of neglect and abuse; patients were falling ill and dying at questionable quantities.

Present

Currently, persons with disabilities have much better care options as our understanding of how to best meet the needs of their adversities has evolved. We still have state-funded housing facilities (but they are much more modern than what people think of when they think back to the institutions of the 19th-20th centuries) and we have community-based housing options (circa the 1960’s-70’s). However, the sociopolitical consensus (at least in my home state of Iowa) is that all housing, care, and treatment services for persons with MI and ID ought to be privatized and provided by our local communities. While I think the general population has the best of intentions, to make this the only option is simply unjust and ill plotted.
Allow me to take the time now to say that I am in no way opposed to community-based housing and community-based services for persons with MI or ID. Having HCBS services as the first option for housing and care is the right thing and it should’ve always been the primary option. I am in great agreement with the general public that the institutions of latter years were ethically immoral—that the environment was conducive to exploitation. What I AM opposed to, however, is the belief that modern state-funded facilities fail persons with ID and MI and should be shut down—leaving this population to seek shelter and services in the community. This sort of “out with the old, in with the new” solution is just about the worst thing for persons with ID and MI.

My brother is a prime example as to why these initiatives fail this vulnerable population and their families. Since the passing of the Olmstead Act of 1996 (essentially a bill that requires the state to transition out clients into the community, not allowing them permanent placement in state-funded facilities), we have had a tumultuous time finding my brother a community home that can meet his needs. In addition to severe mental retardation and autism spectrum disorder, emotional volatility that can escalate to physical aggressions complicate matters even further.

He has been in a variety of HCBS waiver homes in communities since he was preteen. But none were a lasting fit for him. However, his placement at a state-funded facility has been, frankly, a breath of fresh air for my mom and I. We don’t worry about him nearly as much as we do when we try placing him in community housing. You might wonder why. I have a couple ideas..

1. State-funded facilities pay their employees higher wages (as well as the most coveted health benefits in the state) which results in less turnover, stress, and a great deal of employee satisfaction and dedication. As opposed to community housing, employees at the state facility stay for years. This allows a great bond to be forged between my brother and his caregivers.  My brother, being the emotionally attuned man that he is, wants to befriend as many people as he can.  In being at this facility, he has made HUGE strides—things doctors have told us might not ever happen.  I know that this is because he has a team of caregivers that reciprocate the attention he needs.

2.  I don’t know if it’s all state facilities, but all of the ones I am familiar with are certified to use physical restraint if absolutely necessary. My brother has a history of self-harm and physical aggression toward women, so this is of high importance for everyone involved. I have also noticed that the facility he is at employs more men than community housing does (which is a huge deterrent for these behaviors). All community homes my brother has resided at aren’t certified in physical restraint, are primarily staffed by women, and have high turnover rates.

3.  State-funded facilities, due to their larger housing populations, are much more structured. I think my brother’s anxieties are best at bay by routine. The unknown and unplanned, much like my own anxieties (yay genes), welcome a great amount of stress. For my brother, stress is highly correlated with emotional transgressions, and therefore, physical aggressions. Most HCBS places have stipulations regarding unsafe behaviors, which has led to every failed placement. Furthermore, much lower staff to client ratio allows community facilities to give clients freedom to choose activities and make their own plans. Which is great, for some people.  Not so much for people with similar needs to my brother’s.

More than a decade of failed placements has left us discouraged that community housing is what is best–for him, for us, for society. Societal views do not take my brother’s not-so-uncommon situation into account (most of the individuals still living in state-funded facilities have higher, more complicated needs like his). But due to politics, we are put in a position of fixing something that’s not broken. So, you see, I am not against providing more housing opportunities, I’m against eliminating one option and replacing it with another. This is not the place for a “one size fits all” initiative. This “institution” the government is working so hard to close is what my brother calls home. No joke, he says, “[I want to] go home” when he’s been home (where we grew up) and has had his fill of my mom and I. He misses it when he’s gone for more than a day. He loves it there. We love that he loves it there. When it comes to this issue, it shouldn’t be about money—it should be about allowing my brother the same liberties as everybody else. It’s about giving him and others with ID and MI the greatest quality of life. Who are we to tell them it’s not the best thing for them when everything says otherwise?

Our biggest fear is that my brother might someday end up having to be at home with my mom or myself again.  If it were a good fit for him, we would never have sought to remove him in the first place. If these facilities shut down, community housing is going to have to evolve to meet the needs of the more aggressive, anxious clients.  Lest we see this cycle continue.

 

Disclaimer: I’ve been working on this all week. Because it’s a matter that I hold dear to my heart, I wanted to be sure my execution was near perfection. Not sure that it can be without writing a whole damn novel. Oh well.

outside
This is the image most people have when they think of state institutions. This is an example of the elaborate victorian architecture common of the late 1800’s psychiatric institutions. These are no longer used to house persons with ID or MI. I have seen them converted into detention facilities and prisons.
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Author: Caitlyn

Artsy, crafty, history-conscious, earth-friendly, new mama.

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