You’ve heard the statistics. Now here’s the human being. Jolene Johnson is one of thousands of Minnesotans who are losing health care coverage thanks to Governor Tim Pawlenty’s budget cuts. This is her testimony today in front of the Senate Health and Human Services Budget Division Committee.
Here is a transcript of her remarks:
I am here today to speak to all of you about my personal story. We’ve heard statistics. We’ve heard different waivers being cut, and different programs being cut and reasons why. And the truth is I am that person. I am the human being that utilizes the majority of those services.
Yesterday… I’ve been going to the courage center for about five years. And I have Limb Girdle 2A Muscular Dystrophy. For those of you who do not know about muscular dystrophy, the type that I have is the degenerative muscle disorder. And it only gets worse, it does not get better. So preventative care I use the Courage Center and I go to occupational therapy, physical therapy – land and water, and utilize the pool which is also good for muscles like your heart. I have utilized the Courage Center since September and I’ve been on a very concentrated program where I swim on Tuesdays and Thursdays and on Wednesdays I have occupational therapy and physical therapy.
The reasons why I need these services is because I can not get out of bed. I can not get in bed. I can not get on the toilet. I can not get off of the toilet. I can not take a shower by myself. I have to have a personal care attendant. I’ve had personal care attendants since I was 18-years old. I am 30 now. I am at a nursing home level and don’t want to be.
We hear the saying that ‘we choose our future’, I don’t get that choice. But as much as I will try to stand here, or sit here, and stand up for myself, I will. By you cutting in September when I went to the Courage Center…there are 13 hours a day that I am by myself. I either sleep in my wheelchair, I lay on the floor because I have fallen, I lay in bed and have to urinate myself because I have 13 hours of being alone.
On yesterday when I went to the Courage Center I was told that I no longer can go there. That my medical insurance in September had maxed out and I only get six to eight times physical therapy through medical assistance. Now since the beginning in September, I was able to make it into bed. Now I know you probably can’t even fathom what that feeling is, but for me to put myself in bed when I want to go to bed was an amazing feeling. The next thing I was going to work on was getting out of bed, which could have possibly been more important.
If there is a fire, I will die. If there is a problem…I have to go to the bathroom…I have to urinate myself. Now that was cut for me and I do not get that back for another year until I get six more times. I may not have another year. I may not have the strength to maintain what I have. Now because of that cut I do not have that option.
I am begging you to try anything you can do to realize there are people out there like me and there are thousands of us. Now I want to choose my future and at 30 years old I do not want to be in a nursing home. Thank you very much.