by, Renee Wood
Sitting in the Ohio Senate Budget testimonies last May, listening to parents and institutional providers use the Olmstead decision to legitimize continued segregation of people with Developmental Disabilities (DD) by using the decision’s illusive reference to “choice”, I knew my next blog would have to be about Olmstead and choice.
According to ADA.gov the Olmstead decision says that intentional segregation of people with disabilities is a violation of Title II of the American’s with Disabilities Act (ADA) and therefore constitutes discrimination, PERIOD. It does go on to say, “The Court held that public entities must provide community-based services to persons with disabilities when (1) such services are appropriate; (2) the affected persons do not oppose community-based treatment; and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity”. After reading the Olmstead decision, and doing a word search within the document, the word “choice” is not found anywhere in the legal document. I believe the second point above is where people infer the word “choice” as if it meant; “institutional care has to be always available to ANY disabled person, as an equal and protected option, along with community based care, even if community-based options are available, and would work for the individual, rendering institutionalization unnecessary”. But I will argue that that’s not what the Supreme Courts intention was, when it wrote; “affected persons do not oppose community-based treatment”.
Let’s take a brief look at the time period when Olmstead was decided before we discuss what was intended by this decision and what was not intended. The Olmstead decision was rendered in 1999, when community-based services were in their infancy. The ADA of 1991 was merely 8 years old, and institutions as a means of caring for those who needed some type of regular ongoing assistance had been around since the 1800’s, at least. Change is difficult, but changing the mindset of how a country views certain people, as well as changing the way society cares for these people, takes time. It is 2015 now, and assistance to live within the community is much more available then it was. This has grown so fast that those who grew-up in institutions, and their family members who have grown accustomed to these institutions as “A good thing” just can’t conceptualize anything else that could meet their needs. It is baffling to see two people testifying in the same room, both with DD, one who uses a vent and needs total physical care, saying how wonderful community living is, and another person who has no physical obstacles, but when s/he speaks it appears they have a mild intellectual disability, claiming an institution is the only place that can care for their needs because they’re 60 years old and have been there since age 18! I understand that’s all they’ve ever known and don’t want to leave. But doesn’t anyone else question why someone on a ventilator, who needs total care can live with supports in the community, but the person with mild ID can’t? How do parents view this phenomenon I wonder?
So what is “informed choice”? That is a difficult question to figure out. Many children grow-up and stay loyal to their country, and accept the religion of their parent’s. One may question whether staying in what one grew-up with is really a choice, or something that they’ve just grown accustom to, and accepted? My answer is that it depends on the level of freedom they have to make another choice. If the people in the religion they grew-up with, will kill them if they chose, or even investigated another religion, or ostracize them which separates them from family and friends, then I would say those individuals would be hard pressed to choose something different. Opinions of parents can almost make it equally difficult to choose something other than what the parents believe to be best for their child.
What I’m saying is, there’s nothing wrong with staying with what one knows, as long as from the start, they’re free from outside oppression to investigate and choose something else. Are there certain lifestyles that should never be a “choice” even if one grew-up in it and is totally “free” by society to choose something else? I would say absolutely! When slaves were set free, we no longer accepted one person owning another individual (well, except for guardianship, but that’s a topic for another day), even if they wanted to be owned because that’s all they ever knew, it was now illegal. When a child raised in slavery became an adult, and chose to stay on the plantation and work as if s/he were still a slave, it may have seemed like they were freely choosing a slave lifestyle, but they’ve known nothing else – so they may even be uncomfortable with changing that lifestyle. It would have been wrong for society to have turned a blind eye and said; “S/he’s making a choice now to stay in that lifestyle” because it was never a “free choice” in the first place.
What I am comparing is the freedom of the opportunity to experience the whole of society, with the freedom to choose within the narrow confines of oppression. To go against what those who surround one expects of them, is like paddling alone in a ship against the current. When everything around that young person (society, family and education system) has this same narrow direction for him or her, it’s really hard to be a maverick and break free from what others around seem to demand. If one doesn’t make a break from a lifestyle by 30 years old, those brain neuro transmitters, and social constructs of what that individual deems life is for them, are pretty much set. So when a 60 year old with a very mild intellectual disability who’s been institutionalized since they were 18, says, they like it where they are, I don’t doubt them because they’ve never experienced true freedom – all I feel is a sadness that that was the best society had to offer at that time. It’s a new day and we cannot lose another generation of person’s with DD to institutions.
It is true that some people in our society, who are non-disabled, choose to live together in an institutional-like setting and they thrive from that experience. There are seminaries, monasteries, communes, gated communities, etc. Most who have chosen this lifestyle, experienced freedom first, and thought hard and long before choosing this life because it is not the norm in our society (unless you’re a person with DD). Non-disabled people who have chosen to live in these communities are free to leave and choose to live in the greater community. Once a person with DD goes into an ICF, if they want out, it can take 7 to 13 years – that’s why I refer to it as being held hostage. I have no problem with people, including disabled people, freely choosing to form a separate community and live and work together in equality with their non-disabled counterparts, but I would argue that before we can even consider this as an option in society, we MUST first disassemble the current model where non-disabled are in places of power over disabled residents within the walls of the institution, or else we’ll end up repeating what we have now.
I congregate with many friends, some of whom are disabled, and I’ve known since childhood. We benefit greatly from our comradery. When the four or five of us who use wheelchairs, each requiring some level of assistance, go out with our non-disabled spouses and attendants, it probably appears at first glance that “the group home/ICF residents were allowed out”. But the overwhelming majority of people pick up fairly quickly that that is not what’s happening. Why? I think when people freely engage in something they want, it’s a whole different atmosphere and others can tell the difference. We made the decision to get together. We decided together where we would go. We arranged transportation, or helped one another get there. We decided who to take to assist us. This is freedom because it is voluntary. No one set it up, no one required it of us, no one, outside of our group, highly suggested that this would be good for us. One might legitimately argue that if we weren’t thrown together as children in a segregated school, we wouldn’t be comrades now. That might be true, but we’ve each experienced life in the greater community, such as, college, regular employment, non-disabled friends, community apartments/houses, we have had a full and integrated life outside of one another. So, although the relationships started out with segregation – it grew into comrades telling war stories of our survival and supporting one another with things only we, as people with DD, can fully understand.
I can appreciate why those in sheltered workshops fear their closure because they don’t know how they will maintain those friendships. Any graduating high schooler has these same fears and doubts. They don’t really want to leave school and everything they’ve known, but they know they must graduate to develop into adults. It just wouldn’t be right to crack the same stupid joke 20 years later, with the same guys and maintain that adolescent life. Yet this is accepted for those with DD who are in the same workshop for 20 years! I believe to make it easier for people to leave workshops there should be graduation ceremonies with the idea that they’re moving on with life – it was never meant to be a forever placement anyway.
When the Olmstead decision stated: “the affected persons do not oppose community-based treatment”, it was trying to prevent people who could live in the community with supports, from being discharged and shipped to homeless shelters (which would be a dangerous and inappropriate setting for most with I/DD). It was giving the individual the option of saying “No, that’s worse than this place”. But it didn’t say you couldn’t at least offer a homeless shelter as an alternative (with appropriate supports) because someone like me might see it as a better option than an ICF. It equally means, if a State can demonstrate that it can care for an individual in the community, just as well as in an institutional setting, it does NOT need to offer the institutional option to that individual who has never been in an institution. However, for those who already assimilated to institutional life, the State can’t just go yank them out. At the same time, if the State has a community infrastructure that can care for individuals, it holds the right (I would say “duty”) to close the front door to all new admissions. Don’t worry, Ohio isn’t even close to that reality yet.