As I’ve said many times before, having Koan in our lives is a wonderful, joyous adventure. But, there are things I worry about. This type of story is what I spend a lot of time thinking about — and it really scares me. Our vision for Koan is to become a happy, healthy, and independent (as possible) person. This means living on his own in the community, probably in a group setting. Instuitutional living is the right thing for some people. But, for most people with disabilities, instituinalization means a life of depenence, loneliness, and unhappiness. In our current system in Iowa it also costs more to institutionalize a person than it does to provide community living. So, what’s happening to these two young men is one of my nightmare scenarios for Koan — being removed from community living and being institutionalized due to cuts to programs like Medicaid.
It’s no secret that leaders in the House of Representatives and Senate will be looking to make significant cuts to programs like Medicaid in the 2018 legislative session. These types of cuts will make scenarios like the two young men in Cedar Rapids much more common. And, of course, I worry that this will be Koan’s fate as well. These types of deep cuts in social programs for disabled people are immoral and unconscionable. I need everyone who cares about Koan to help us hold our representatives accountable for any actions they may take that would damage Koan’s future.
The cynical part of me believes that some of our elected officials do some cruel policy/electoral calculus when considering cutting social programs like Medicaid. I suspect that they may believe that since disabled people often don’t vote, that there will be little pushback for making cuts to spending. What I would like to prove this type of thinking wrong. But, I need your help.
Heres’ what I’d like to do. I would like to organize a “Koan Action Network”. A group of people who love and believe that Koan should have access to programs and supports that will give him the opportunity to lead a healthy, happy, independent life. To do that, we will contact (write, call, email) elected officials when there are policy decisions being considered that will have an impact on the supports Koan will need for his future. I don’t anticipate this will be a difficult commitment. There may be prolonged periods of time where we do nothing. But, there may be times when I ask that we all make contacts frequently to ramp up the intensity of the message. We need to let our elected officials know that when they make policy decisions that are detrimental to disabled people that there is a community around each disabled person that hold them accountable.
If you are interested, please fillout this very brief Form — it asks for your contact information. I will create an email and text group and send messages as to the whole group requesting that you contact elected officials when there is an action item. I’ll provide talking points that identify the problem and what we believe the official should support or oppose. I’ll also ask that you reference Koan by name because I want them to connect any policy change to a real person. These communications from me will brief and the act of making a call or writing an email should take less than 10 minutes. So, this won’t take much time or effort. But, the impact will be enormous. These types of contacts really do make a difference.
I would love it if we could make it clear to people in office that when they make a change to a program that negatively impacts vulnerable disabled people that there are 10, 20, 30, 0r even hundreds of voices that will speak for this one person. If we can get this type of thing going, it will be powerful!
Finally, I do want to be clear that while these calls may feel like you are taking sides in a partisan argument (democrats vs. republicans), I would ask you not to think about it that way. I view this as a non-partisain issue. Over the last 8 months I’ve gotten to know people from all different places on the political spectrum — very conservative to very progressive. I have yet to meet anyone who has told me that cutting social programs for Koan is a good idea. So, this is not about choosing a political side. The goal here is to safe-guard Koan’s (and all disabled peoples’) futures.
Please sign up if you wish to make a difference and help.