by, Renee Wood
Sometimes one has one of those weeks that you wonder if, all your hard work and efforts, really make any lasting difference at all. It seems like people revert back to their comfort zone and rationalize why it’s the “best we can do in this situation”. I remember even in my 20’s discussing my “worth(lessness)” with my priest, and he was explaining the difference I made in the parish. I must have had a look of puzzlement and disbelief on my face because he responded in earnest, “You really don’t see it do you”? I said, “No! I know what I have done action wise, but I see no worth or fruit – it all seems pointless to me, but something compels me to keep trying when reason would say, ‘Quit banging your head on that wall because it hurts’. But no, I go back and bang my head on that stupid wall”. He said, for some reason God has hidden this from you, and that you may not ever “see” what you do here. Sometimes at low points, when I feel like what’s the use, I try to remember his words and I get up and try again.
As I say that, I want to make clear, I don’t expect I can change everything, or like “I’m right and everyone’s wrong”. That’s not it all – it’s just that when it comes to actually living the experience of disability, I wish typical people wouldn’t assume that we “deserve” a different life than them, and try to rationalize that living the life in an institution is somehow equivalent to how typical people live. Even though they have to make decisions for some of their loved ones, I wish that guardians/caregivers would assume that the person they are assisting would want a life that is like a typical person’s until proven otherwise.
This is why some misunderstand what the Olmstead Decision, as well as the Centers for Medicaid and Medicare’s (CMS) Home and Community-Based Rule, was meant to address. Some people still wrongly think that these Rules give a “choice” between 2 equivalent options, but the words “most integrated setting” clearly is saying “community-based” services should be the first option unless, for listed reasons, this just isn’t possible. Why is community-based services the preferred setting by CMS and Olmstead? It’s because this is the way most typical Americans live, and our government wants to ensure every disabled American has an equal opportunity to first encounter a life lived as a typical American with the right supports. So one more time, I will “bang my head on that impenetrable wall” and compare and contrasts what a typical person’s life is like with those who live with 3 or more unrelated persons (institutions).
- The average non-disabled adult does not live with 3 or more unrelated persons. In fact, unless living in an unwed lover relationship, most non-disabled Americans don’t live with even 1 unrelated person (stepchildren I consider related by marriage), especially after the age of 30.
- The way in which typical households in America develop is, 2 adult people usually fall-in love, cohabitate, have children and/or pursue their individual careers, retire and spend time with family and friends. Or they remain single and rent or buy a dwelling in which they control what takes place within the unit itself (an apartment or condo might have some noise and common use policies, but one can do pretty much what they want inside their living unit). Usually there’s no unrelated people living in their domain.
- Typical households don’t usually have someone hired to manage and control the environment. When they do hire a lawn service, cleaning woman or contractor, the people living there are the employers, and the workers seek to please them, and the employees work at the resident’s discretion. When there is an irreconcilable difference the worker is terminated, rather than the resident having to find a different place to live.
- Non-disabled adults don’t live in situations where someone hired to take care of the home, is superior over them, and when push comes to shove, that hired employee reigns and dominates.
The Reality of The Difference
There are many more differences between institutional life and community-based life for people with disabilities, but the 4 reasons above are the primary ones. So the reader might ask; why am I so keyed up about this? I am so frustrated when owners of ICFs (Intermediate Care Facilities), some parents and some professionals try to convince me that, small ICFs (4 to 8 beds) is the same as living in the community. Their rationale is, these facilities are in neighborhoods and don’t run much different than Waiver homes or group homes? That is by far a true statement, but actually, it’s the reverse. Group homes and Waiver Homes are not much different than small ICFs (mini institutions). Many institutions are located in neighborhoods now. We’re passed the days where we set institutions off in a remote area. So does location determine whether something is an institution or not? It could, but in and of itself, no, placement alone doesn’t determine whether a building or dwelling is an institution.
Their second rationale is; small ICFs just look like any other home in the neighborhood. Ok, I’ll agree with that, so what! Some of these places are nice looking, even homey, but does aesthetics determine the difference between life in the community, and life in an institution? I think not. Reminds me of the CNN commercials where you have a bunch of bananas piled up with an apple in them and say, “See, there’s no apples, it’s all bananas until you dig deeper for the truth”.
Finally, they try to convince me that people who reside in ICFs have just as much freedom, and have a life identical to those typical people living in the community. “Really”, I ask?! “So 60 to 80% are snuggled up in their bed with a lover (and of course, some have non-disabled lovers and some have same sex lovers)? Oh cool, and you are saying since institutions are like a typical life, that 50% of ICF residents get married, and/or have kids, and raise their children right in the ICF”? I further marvel, “If they can’t sleep, they can sit in their common living room half dressed, open a beer, and watch Jay Leno? Oh yeah, and since they have a lover in their bed, their lover comes out, grabs a glass of wine, snuggles by them to watch Jay Leno. One thing leads to another, and they’re having passionate sex right there on their couch in front of Jay Leno? That’s amazing – I never knew that ICFs were so free”!
Yes, I’m being facetious, but usually the sex thing shocks people into realizing the lack of freedom to live as freely as other Americans – if one believes institutions are necessary, at least be honest with yourself – it’s not equivalent to your own home in the community.
Last, but not least, is the hierarchical power structure within an institution that creates an extreme imbalance of power between those with disabilities and those without disabilities. In my opinion, this is the primary telltale sign of an institution. Doesn’t matter if it’s a single unit apartment, or a 60 bed ICF, if that individual only has the freedom that the non-disabled, paid person permits – it’s an institution. Have you ever seen someone with DD own, manage, or work at a high level within ICFs? You might find a grunt worker with DD, or a rare case of a HR person with DD, but by in large, these places are owned and operated by people without visible disabilities. Do non-disabled live there? If so (but of course they can’t by policy), are they expected to follow the same rules as those with DD?
From the fore mentioned differences in living in an institution, I believe the imbalance of power is the issue that most robs one of their dignity and self-worth. No matter how nice the staff may be (and I’m giving lots more credit here then what’s true), the person with DD knows where they stand in that hierarchical structure. Their version of events will never be given equal weight as the much needed and valued staff’s version. One of two things will happen, either the person with DD will become timid and just get through life without discovering their own purpose (don’t worry, staff will concoct one for them which will be convenient for the staff), or they will become a real problem. If in fighting for what they want with limited ability to articulate, at a certain point they will be diagnosed with a mental illness, placed on medication, and never really get resolved why they were angry.
Anyone who doesn’t believe that non-disabled are superior over the disabled in these institutions, is willfully turning their head to be unaware. That’s how institutions were originally designed, because it was thought that those who went to institutions were “incapable”, and since professionals who are employed there are regarded as “capable” and do their best for these “unfortunates”, they are/were naturally viewed as superior over people with disabilities.
Life inside an institution under someone else’s domain, is not equivalent to living life in the greater community – what I phrase as, “Living like mainstream society”. To iterate such would be intellectually dishonest. Is it morally wrong to freely choose to live in a segregated domain – no! Is it morally wrong to entice, force or coerce someone into an institution due to lack of resources for community-based services – in my opinion – yes!