—an essay from our Information & Referral Coordinator, Erna Dobbs
The name comes from Tommy Olmstead. He was the Commissioner of the Department of Human Resources. He fought in defense of the case against Lois Curtis and later Elaine Wilson. Although both had cognitive disabilities, they were able to live on their own with very little assistance. But with no assistance available from the community, they went from hospital to homelessness, and back and forth continually. Their cases made it clear that confining those with disabilities to institutions was discriminatory, and stressed that services to prevent this from happening should be available.
On to my story. My name is Erna. I had back surgery in April of 2016 and as I was still recovering from complications in Sept of 2016, I faced a severe lack of energy. One evening when my daughter came in from work to find me in the same condition she had left me that morning, we made our way to the ER. After a multitude of tests, it was found that I had a kidney stone blocking my right kidney and I would have surgery at 6am the next morning.
Before that time, I went into a coma and was not breathing on my own. I was also in congestive heart failure as well as kidney failure. It was discovered that sepsis had set in and was shutting down my organs. After a week it was determined that I probably would not make it and the family was told to prepare to make some tough decisions. Three days later I woke up 100% paralyzed from the neck down.
After more tests it was found that I was suffering from a very rare neuropathy called Critical Illness Polyneuropathy that affects the peripheral nerves and is usually caused from severe trauma or infection. The only treatment is continual therapy, which I soon found out was not going to be possible. On October 16th, 2016, I was admitted to a nursing rehab center. Over the next 13 months I discovered that the horror stories you hear about nursing homes are true.
In that 13 months I had maybe 5 months of therapy. By that time, I was told the insurance would no longer cover it, no matter that the Dr. was still ordering it. After that the doctor ordered that I get up two hours in the morning, two hours at noon and two hours in the evening. That ended up not being possible because if anyone did get me up, I was not able to get someone to lay me back down. One time my daughter came in to find me crying in severe pain and soaked in urine after being up for six hours. After that if I asked to get up, I was told there was not time. At one time when I still could not use my hands, I was not fed for three days because no one had time, because they were short handed and that I need to figure out how to do it myself. Because of this treatment as well as other problems my family and friends that visited called the state several times. With those inspections and others, like the subpar dietary temps and pest & rodent infestation that was actually seen in my room as well as other rooms, the inspections never resulted in any citations.
Several months after my insurance stopped paying, I was told that I needed move out. I was given no help from the social worker or administration. A judge was brought in several times to order me out but each time she advised the social worker to find me a safe place to go. I finally started looking on my own and found out about NWGA Center for Independent Living and with their transition program I moved in to my own apartment on November 16, 2017. The Center helped to get me items needed to make it possible for me to live on my own.
It is sad that Medicare does not help with any types of care if someone has no use of the lower limbs and must have an aide in order to get up by a Hoyer lift, and same to lay down. If you don’t qualify for Medicaid, you only have one option and that is to private pay someone.
At least because of the Olmstead decision people that have disabilities have the right to live on their own independently and those without disabilities know they have the right to live independently just as they do!!!
At NWGA Center for Independent Living, we provide a unique service because we are peers to the people we serve. Our employees have disabilities, ranging between sensory, mobility, mental, etc; this means we work with our consumers from a place of “I’ve been there,” which is unique to peer services. Erna’s story here is a prime example of how we assist our consumers in gaining their independence through peer support. If this sounds like something you would like help with, please contact us at firstname.lastname@example.org or 706-314-0008 and we’d be happy to talk with you, and see how our services could assist you.