To shorten a long story, I lost my insurance due to the Affordable Care Act on March 31 and I started a new plan on April 1. Among other things, the plan I had covered nursing care, average about 19 hours a day. While on that plan, I switched from using a ventilator 24/7 to a diaphragmatic pacemaker in late 2010. At first after switching devices, insurance was giving me trouble about covering care, but after further documentation and months, I was told the pacemaker was being considered the same as the vent.
Going forward to this past Monday, April 7, I was told by my insurer that my nursing care was being cancelled of of May 7 since I no longer used the vent. I asked the person that called what would happen if I went back on the vent, she said that in order to qualify I had to either be working to get off the vent or have a progressive disease that required a vent. I received letters yesterday to confirm the decision, but these now based it entirely on not using the vent, nothing else. Now, unless something changes, I will have no choice other than a nursing home covered by Title 19.
I've contacted both Iowa senators, one of which is Tom Harkin, the author of the ADA, Iowa representatives, and a local news station. The response from Harkin's office has been of mainly skepticism, but they did agree to review the insurance guidelines. I have not heard back from any of the other contacts I've made.
My county DHS worker did manage to get an exception made for a waiver to pay for 40 hours a week of care, but only for three months. That's a great start, but my parents and I don't know if it will be enough. My mom received severe leg and hip injuries in the accident that I received my SCI, so she has always been limited in what physical care she can help me with. As the years have progressed, her abilities have also decreased. Mom still does a lot, but anything major like turning, adjusting in bed, etc. is up to dad. We're trying to see if he slept near me at night and woke up to turn me every two hours if we could get it to work with four 10 hour days covered so he and mom can work. However, past experience has said that after a few days of this, everyone starts getting sick and I have more trouble with suctioning and pressure sores as well.
If anyone is still reading or managing to make any sense of this, I'm looking for any further advice. We have considered maybe some volunteer help through our church and relatives, but are unsure how to start. I'm dealing with some major pressure sores already and have been having other problems that would require a lot from volunteer help. We're still looking for more possibilities and are appealing insurance's decision, but thought I would ask here for ideas as well.
Going forward to this past Monday, April 7, I was told by my insurer that my nursing care was being cancelled of of May 7 since I no longer used the vent. I asked the person that called what would happen if I went back on the vent, she said that in order to qualify I had to either be working to get off the vent or have a progressive disease that required a vent. I received letters yesterday to confirm the decision, but these now based it entirely on not using the vent, nothing else. Now, unless something changes, I will have no choice other than a nursing home covered by Title 19.
I've contacted both Iowa senators, one of which is Tom Harkin, the author of the ADA, Iowa representatives, and a local news station. The response from Harkin's office has been of mainly skepticism, but they did agree to review the insurance guidelines. I have not heard back from any of the other contacts I've made.
My county DHS worker did manage to get an exception made for a waiver to pay for 40 hours a week of care, but only for three months. That's a great start, but my parents and I don't know if it will be enough. My mom received severe leg and hip injuries in the accident that I received my SCI, so she has always been limited in what physical care she can help me with. As the years have progressed, her abilities have also decreased. Mom still does a lot, but anything major like turning, adjusting in bed, etc. is up to dad. We're trying to see if he slept near me at night and woke up to turn me every two hours if we could get it to work with four 10 hour days covered so he and mom can work. However, past experience has said that after a few days of this, everyone starts getting sick and I have more trouble with suctioning and pressure sores as well.
If anyone is still reading or managing to make any sense of this, I'm looking for any further advice. We have considered maybe some volunteer help through our church and relatives, but are unsure how to start. I'm dealing with some major pressure sores already and have been having other problems that would require a lot from volunteer help. We're still looking for more possibilities and are appealing insurance's decision, but thought I would ask here for ideas as well.
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