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Hello, my name is Lee and I am a C2 quadriplegic due to a disease called neuro myelitis optica. I had a sudden onset of symptoms which I compare to a heart attack except it was my spine instead of my heart. Within 40 minutes from being woke up from my nightly sleep with a sudden urge to relieve my bladder, I was laying flat on my back in the hospital emergency room, intubated and on a ventilator, unable to move anything from my chin down. That was on April 20, 2007.


I've been able to remain at home during this time due to my mother and sister caring for me. I never qualified for Medicaid so I was not able to get a personal care aide to help me. I recently found out that Medicare does say it will pay 28-35 hours of care if the patient meets certain criteria (which I do) and if a doctor prescribes it (which the doctor did). Now I cannot find anyone to take the prescription and provide the care. Has anyone else had this situation and what did you do?

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Thanks for responding back. I'm currently on home Health with my County Hospital and I am getting twice monthly visits from home healthcare to get my PT/INR checked and once a month I have my suprapubic tube changed. CNA's comes to my house twice a week to help give me a bath and help move me to my chair. My mother or sister are always here to help because it is much easier on me and their backs if there are two people doing it. On the days that home health doesn't come, My aunt comes to help. I was receiving three days of CNA's time until a new nursing manager came on board and cut it down to only two days per week. She also said that I needed a long-term care agency for my care (even though I had been with them for over 11 years.)

I contacted Interim, which is on the approved list for Medicare. They gave me a sheet and explained the difference between home Health And Home Care. Since what I am requesting is for a person to come in during the morning to help my mom or sister. I explained that I am needing more than a bed bath during that time. My sister wrote out a daily routine. Sometimes if we are in a rush and we don't do all of these things and time varies based on whether I'm sick or not.

*** *** *** *** *** *** 
Lee's Morning Routine
Wake her up between 9-10 a.m.
Remove oxygen and turn off concentrator,
Administer her morning medication (Neurontin, baclofen, Lexapro, stool softener,)
Empty Her Foley
Perform range of motion exercises on her legs and arms
Give her a bed bath (wash hair using a hair washing pan on Tuesdays and Thursdays)
Clean around suprapubic site and diaphragm pacer site and change dressing pads
Dress her for the day
Slide net for Hoyer lift under her.
Using Hoyer lift, move her from the bed to the wheelchair.
Perform trach care (clean around trache site and change dressing pads)
As needed, use percussion vest to shake her chest and use cough assist machines.
Prepare and feed Her breakfast (generally instant grits or French toast sticks)
Brush Her Teeth
Three days a week, Lee uses electro stimulator on her legs to help with pain and muscles spasms.
 
*** *** *** *** *** *** *** *** *** 
Interim Explained that they do not have the skilled nursing to handle my request. I told him that I really didn't need a skilled nurse to come because either my mom or my sister would be here to handle that part. They then told me it would be $21/hr with a three hour minimum. Unfortunately, I cannot afford $63 per day. When I went back to Medicare to explain and ask the question about whether or not there were exceptions about the bathing because it says "typically" only pays for two baths per week. They said I need to go back to my provider (which I say they are talking about my doctor — and not my current home health agency) and get them to call the provider line to see what is covered or can't be covered. I really don't know what to even ask for.

Without help getting up in the mornings I'm bedbound. I have family around that helps me at night. I'm very fortunate and blessed that I've been able to get into my wheelchair almost every day that I've been at home for the last 11 1/2 years. The only times that I have not is because I've been in the hospital and it doesn't take very long for my abdomen and diaphragm muscles to atrophy and it takes me so long to build it back up. Getting in my chair also helps keep me from getting bedsores.

I was just hoping that Medicare would allow us some more CNA time and didn't know what what the doctor should put in the care plan to justify it.

Thank you and I apologize for the long response.Lee
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Reply to lee5960
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Thanks for responding back. I'm currently on home Health with my County Hospital and I am getting twice monthly visits from home healthcare to get my PT/INR checked and once a month I have my suprapubic tube changed. CNA's comes to my house twice a week to help give me a bath and help move me to my chair. My mother or sister are always here to help because it is much easier on me and their backs if there are two people doing it. On the days that home health doesn't come, My aunt comes to help. I was receiving three days of CNA's time until a new nursing manager came on board and cut it down to only two days per week. She also said that I needed a long-term care agency for my care (even though I had been with them for over 11 years.)

I contacted Interim, which is on the approved list for Medicare. They gave me a sheet and explained the difference between home Health And Home Care. Since what I am requesting is for a person to come in during the morning to help my mom or sister. I explained that I am needing more than a bed bath during that time. My sister wrote out a daily routine. Sometimes if we are in a rush and we don't do all of these things and time varies based on whether I'm sick or not.

*** *** *** *** *** *** 
Lee's Morning Routine
Wake her up between 9-10 a.m.
Remove oxygen and turn off concentrator,
Administer her morning medication (Neurontin, baclofen, Lexapro, stool softener,)
Empty Her Foley
Perform range of motion exercises on her legs and arms
Give her a bed bath (wash hair using a hair washing pan on Tuesdays and Thursdays)
Clean around suprapubic site and diaphragm pacer site and change dressing pads
Dress her for the day
Slide net for Hoyer lift under her.
Using Hoyer lift, move her from the bed to the wheelchair.
Perform trach care (clean around trache site and change dressing pads)
As needed, use percussion vest to shake her chest and use cough assist machines.
Prepare and feed Her breakfast (generally instant grits or French toast sticks)
Brush Her Teeth
Three days a week, Lee uses electro stimulator on her legs to help with pain and muscles spasms.
 
*** *** *** *** *** *** *** *** *** 
Interim Explained that they do not have the skilled nursing to handle my request. I told him that I really didn't need a skilled nurse to come because either my mom or my sister would be here to handle that part. They then told me it would be $21/hr with a three hour minimum. Unfortunately, I cannot afford $63 per day. When I went back to Medicare to explain and ask the question about whether or not there were exceptions about the bathing because it says "typically" only pays for two baths per week. They said I need to go back to my provider (which I say they are talking about my doctor — and not my current home health agency) and get them to call the provider line to see what is covered or can't be covered. I really don't know what to even ask for.

Without help getting up in the mornings I'm bedbound. I have family around that helps me at night. I'm very fortunate and blessed that I've been able to get into my wheelchair almost every day that I've been at home for the last 11 1/2 years. The only times that I have not is because I've been in the hospital and it doesn't take very long for my abdomen and diaphragm muscles to atrophy and it takes me so long to build it back up. Getting in my chair also helps keep me from getting bedsores.

I was just hoping that Medicare would allow us some more CNA time and didn't know what what the doctor should put in the care plan to justify it.

Thank you and I apologize for the long response.Lee
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Reply to lee5960
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Here is what Medicare will cover regarding home health care. https://www.medicare.gov/coverage/home-health-services
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Reply to freqflyer
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Medicare has limited coverage for in home care and you have to go through a Medicare-certified agency.
Maybe you could call medicare & get a list of certified agencies in your area?
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Reply to worriedinCali
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I’m wondering where you found this information? I’m not aware of this program and am thinking it’s too good to be true. I would assume it’s help by CNA’s. I was a home care RN for 3 years and we delivered skilled care for an acute post hospitalization cases.
I hope you find what you are looking for.
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Reply to Shane1124
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Hi Lee,
Not sure exactly how to locate one in your area, but I think you need to find a Medicare certified home health agency. Sounds like you're dealing with a medicare provider issue and medicare does this with all of the health services we need... providers are only approved or "certified" by Medicare if they've passed an inspection conducted by a state government agency. Without the certification, families are not able to use their services.
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Reply to Caring4Alice
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