The JJs List Blog

Should independent living be a choice?

Posted by on September 25, 2011 - 0 Comments

Ben is a JJ’s List volunteer who now lives independently. In this post, he shares his feelings about institution vs. independent living, and the recent Olmstead class action suit in Cook County.

A Mental Institution. Photo by stillawastrel

The proposed agreement as a result of the class action suit, entitled the Olmstead decision allows people with disabilities who live in nursing homes to be able choose to live independently, is a step forward. The proposal would give closure to a lawsuit filed in 2007 by an advocacy group for the disabled. However, it is only the beginning in a long process. These people need resources to make the transition from life in an institution to being able to live successfully in the community. Any nursing home or institution, no matter how good they maybe follow a pattern that robs an individual of the ability to make even the most basic decisions such as when to wake up, when to eat and when to brush your teeth. All of this destroys your humanity, dignity, and confidence, sometimes to the point where it is lost forever. This leads to the need for more help, which ultimately costs more money to the state as well as individuals and their families.

I know what this is like from a personal standpoint I have been in hospitals through adolescence and was in a clinical institution going into part of my teenage years. Because of this I never had a normal life growing up and that affects me to this day in my adult life with some decisions and choices I make in how I manage my anxiety. One thing that is specifically very hard for me is my anxiety in social situations such as meeting someone new or finding someone I am interested or a girlfriend etc. Finding the right support can be a challenge and no institution can meet the needs of every type of disability. Because of this nursing homes have rules that don’t suit individual needs. Yet these institutions will accept a diverse group of people with disabilities and fit them all into the same box. This labeling is wrong and in the end it is destructive to all of us.

I was fortunate enough to have the proper support, but I was initially scared and reluctant to live independently. My Parents never doubted that given the right support, I would succeed at being independent. These high expectations from my caregivers resulted in me expecting more for myself. While I did make mistakes, with the right support I was able to rectify and learn from my mistakes. If you teach a person with disabilities to have low expectations for them-selves they will most likely maintain those low expectations. The problem with this is that they never learn how much they are capable of doing. Any people with disabilities suffer from low self-esteem and judge themselves harshly. What we need is someone to help build confidence and not break it down. I have gained a lot from living independently that I would not have gained if I were still in an institution. One example is the friendships I have made, this is big because I had a very limited social life child and I don’t think living in an institution can help this. Another big example is the fact that as a child I could not pick up on social cues at all, by living independently and being around my friends and exposed to people I have picked up on them and learned them quite well, this also could not have happened in an institution. I think that the Olmstead victory will be a good reference to refer to for people in similar situations and I hope to see the state of Illinois’s grade on mental health currently standing at a D will improve.

My disabilities include fine and gross motor problems, scoliosis, epilepsy, and I suffer from schizo-affective disorder.



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