What's My Diagnosis?

I just want to find out my true diagnosis with Medicare/Medicaid. In the rehab it was made Persistent Vegetative State, and later they couldn't change it when they started communicating with me. Recently, a family member found paperwork from back in 2006 from the hospital I was at. (A different hospital.) They had me as Acute Respiratory Failure in 2005. Records end there, but I left in 2006.

How am I alive?

So I haven't been breathing since 2005.  It says cleared in small letters below but that doesn't change a diagnosis.

I actually was in a coma when diagnosed. The diagnosis supposedly couldn't be changed. Then, I saw those papers that said I am dead.

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I do  know that I am in a coma.

https://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

My eyes are open, so it's an open-eye coma.

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Ten years ago I saw a local doctor for redetermination. He kept gasping, "What happened?" I  later saw another doctor for redetermination. Either of these doctors could have changed my diagnosis, but I was under the impression that I was stuck with the original. Diagnosis is federal, not state. 

Both of the diagnoses of Persistent Vegetative State and Acute Respiratory Failure are wrong. I am not in a coma and I am not dead.

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I just want to know what my diagnosis is. Why can't it be simple brain injury?

I have a few more things to try, but this is not readily available information. (I have to make an account on-line with Medicare? That's faster than calling them.)

I Am Not Paralyzed Anymore

To say that I am quadriplegic is just flat out wrong. I need to be re-evaluated for RESIDUAL QUADRIPARESIS, because Hell if I am still Quadriplegic. I move everything now. I'm just not strong enough to bear weight.

An occupational therapist helped me find the term.

If I am quadriplegic, then how am I typing this? Yes, I am motor impaired, but I am not paralyzed. I use one finger to type.

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The picture above is an exercise I did in rehab 17 years ago.

I continued with using that particular movement for the last 17 years because it is easier for diaper changing. I was showing a CNA what I learned in Physical Therapy. She had me push up for diaper changing and the skill has remained.

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Few know this, but when I opened my eyes, I was in SCI, Spinal Cord Injury. I did not break my spinal cord, but injury was so severe that my initial presentation appeared to be quadriplegic.

Movement is a miracle. I do move everything now. Movement is just weak. I can't support my body to stand.

I still maintain that my body released adult stem cells. My development looks like the videos I have seen of quadriplegics who successfully receive stem cell therapy.

The man in the video had stem cell therapy.

He has RESIDUAL QUADRIPARESIS.

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Why is it taking so long?

It's mostly a paperwork issue, I think. The computer system could have been set up not to record a new diagnosis, but I have yet to receive a new diagnosis. I'm not sure what the problem is.

With the old diagnosis. A person usually dies. I should be dead by now.

This might be why it's so long. I'm dead... on paper. If a ghost was writing, that would be a different problem. 

I don't know what the hang-up is. I've recently enlisted help from my local state government to deal with this federal issue. That would be my successful application for Brain Injury Medicaid Waiver. We'll see what happens.

Retire On This!

Disability is not income. I don't have income tax. When has a vegetative person paid income tax? I don't see people in comas working. That's what makes this weird. I was in a total coma, opened my eyes, my body still appeared to be in coma, and then I start talking. To top it off, I am knowledgeable. People in comas don't write. (Talking is years later.)

Social Security is a real retirement program. The healthcare part is called Medicare. If you become disabled before retirement age, you can collect it if approved.  

The Government Failed Me

UPDATED 8/31/2018

I am vegetative and the US government has done squat to help me. In fact, some of their policies have caused death in others. "I am vegetative" is already a red flag. The statement means an error was made somewhere.

I have Medicare. I worked for it. (For those working, look at your paystub. A good chunk of money was taken out. You are paying for Medicare and disability.) It's real insurance; lousy  but real. I have/had Medicaid. They must be broke now because they won't cover the cost of my feeding tube supplies. Medicare won't either. I have to purchase supplement insurance through Blue Cross. (This hurts financially! They stopped at Christmas time- what a present! You know I already spent my money, so I was depending on donation.)

THIS goes back to Terri Schiavo. The government does not do long-term feeding for vegetative patients. If someone is in the hospital, a different program may be paying. It may still be government, but there are different people and different rules.

This will be weird trying to explain me writing this. I'm vegetative with a feeding tube. My eyes opened 15 years ago, but I couldn't speak. I was made vegetative. (Ha! I was conscious.) Slowly I've made a comeback. I got out of a hospital. Now I write. I still have medical issues, but know how to manage them. I am not a doctor, but notably I have been a care provider, social worker, and early intervention program manager for the disabled. I don't do surgery, but know how many human body systems work.

I'm not getting any assistance, financially. My caregiver's salary is paid through a state program.  My wheelchair and bed have been paid for through Medicare and Medicaid. When I needed a new wheelchair battery, my father had to pay for it (labor can be expensive).

The federal government hasn't done much to help me. Help has come from private citizens- a company or a university might be in there, but one of these persons started it. I'd be suspicious if someone from the government showed up now.

Now I Am Dead

I have been trying to get the Medicaid Waiver for Brain Injury in California, http://thoughtfulveg.blogspot.com/2017/03/brain-injury-medicaid-waiver-in.html

I have met up with barriers and obstacles. This Medicaid Waiver is something new. I have previously used a Medicaid Waiver for developmentally disabled persons on my caseload when I did this kind of work elsewhere. This would fit other disabilities, and the person would have to be institution eligible.

From what I can tell, one form is 12 pages long. The Plan of Treatment form appears to be twelve pages long. When I click on this, it says it is on page 1 of 12. (I think this would cause the worker to die, not me.)

It has taken a few messages just to get through to these people.

I warn u if u call, u may not understand me. My speech is difficult to understand at times.

I have an unusual case. I should be in a hospital now, but have the intelligence of a doctor. I am not. I also have the intelligence of a financial officer; hence contacting u. I have a Share of Cost cuz my last employment put me in a higher tax bracket. I say just Medicaid Waiver me. I'll become a household of 1 with $0 income.

This is EXTREMELY special circumstance. My diagnosis says I am vegetative, but I now talk a little n obviously type with 1 finger. Knowledge is extreme. I will be cc-ing this e-mail.

 -Angela

CC-ing is just what I have done. Others can see the lunacy.

There was a Share of Cost on my Medicaid which my father cleared up, but the way in which it was done only puts a band-aid over a serious problem. They were closing the case since the immediate Share of Cost issue was cleared. I wrote to them:

Share of Cost or not, I should still be made Medicaid Waiver. Doesn't it amaze u that u are e-mailed by a brain dead patient? There was Share of Cost 2wks ago, but my father went ahead n purchased the extra policy. He dies n we have this problem again.

 -Angela

It sounds clear doesn't it? Well, now I am dead.

Thank you for contacting the Ombudsman Office.  The Medi-Cal is still active without a share of cost.  Since the member is deceased, please, contact your local Medi-Cal county office to inform them so they can deactivate his Medi-Cal eligibility at 209-385-3000. If you choose to do it by mail, please, visit our website and print out an MC-215 and submit it to the county office.   You can find the form at www.dhcs.ca.gov by typing in MC-215 in the search box on the upper right hand corner….

 

Thank you,

Medi-Cal is Medicaid in California. 

I'm laughing too much to respond. What's wrong with these people?

*This is not for everyone! Remember I said I had to be certified as hospital material? "Medicaid Waiver programs help provide services to people who would otherwise be in an institution, nursing home, or hospital to receive long-term care in the community." https://en.wikipedia.org/wiki/Medicaid_waiver

 

Brain Injury Medicaid Waiver in California

I was given the link for the brain injury Medicaid Waiver in California, http://www.dhcs.ca.gov/services/ltc/Pages/In-HomeOperations.aspx

CLICK TO ENLARGE

I had been having issues with a share of cost. I figured I'll just Medicaid Waiver the whole thing and be certified I should be in a hospital. Then that would be waived. That diagnosis that says I am a vegetable comes in handy.

I am met with, "We haven't seen this so we don't have to do it." This county had a different way of handling my issue. A family member went in and got the share of cost lowered if I purchase separate insurance.

So what's the deal with the brain injury Medicaid Waiver? We got it for a bit and then it was taken away? Is this only good for some counties but not the one I live in? It's not the local workers' fault. There could be some state policy they are not aware of.

There are brain injury Medicaid waivers available in other states. These are new with most workers. Give them some leeway. They are trying to find the best program available for you. Check with your state if there is a Medicaid Waiver available to you. The one above is California only.

This is not for everyone! Remember I said I had to be certified as hospital material? "Medicaid Waiver programs help provide services to people who would otherwise be in an institution, nursing home, or hospital to receive long-term care in the community." https://en.wikipedia.org/wiki/Medicaid_waiver The person applying must be eligible for a "home" or higher. I was looking at these forms above. The medical form is 12 pages long!

This isn't easy. If anyone knows anything, please comment or message me.

Still Getting Screwed

In the hospital I lost my health insurance. This happens if you have a major injury that can't be fixed right away and you can't return to work, if your medical insurance is through them. But you think, "that's  no worry. I pay Social Security. I see it on my pay stub." It takes a couple years for Medicare to kick in.

Luckily, there is Medicaid. (I found out Medicaid is NOT in every state. So these people are screwed.) So I had Medicaid and it was awful. I did what I call the "Medicaid Shuffle"-I went from one placement to the next. I saw 5 hospitals, 2 nursing homes, and 1 long-term care facility in 2 years. I managed to stay the last year in the same place until it closed the unit where I was. I was then able to manage a transfer home.

I now have both Medicaid and Medicare. Things are better, but not much. I'm lucky in that I know what I need. Most aren't like this, though. Then I read this in a UCP newsletter:



California Dual-Eligibles Cite Problems with Getting Care
Patients that are on both Medicaid and Medicare in California are running into issues when trying to address their care. California has almost 1.1 million “dual-eligibles,” who account for some of the most expensive health costs around the country. The government must spend so much money on duals because of their illnesses and disabilities. Patients who are duals often bounce between the two plans and often receive unnecessary, duplicative and poorly coordinated services. They cycle through emergency rooms, hospitals and nursing homes more than other Medicare or Medicaid enrollees, according to the Kaiser Family Foundation. Even U.S. Health and Human Services Secretary Kathleen Sebelius has acknowledged that the navigation between Medicare and Medicaid programs is “quite difficult and ineffective.” Starting in 2013, California state will begin a trial that will shift several hundred thousand duals into managed care plans that serve their needs. Click here to learn more.

We Suck

This is in reference to http://thoughtfulveg.blogspot.com/2011/05/neurological-epidemic.html

When I say the government dropped the ball with me, I'll explain my situation, and then let you come to your own conclusion. Some may have harsher words. I use myself as the example, but there are many Americans with whom the government "dropped the ball." Many of them don't understand why.

When I started I was working  I tell my story in http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage Since I was working, I had good insurance. I went to a nice brain injury rehab connected to a hospital. But that insurance didn't last. Right before I left I started making sounds. This was a big deal scientifically. That hospital had me scoped - they threaded a camera down my nose to my voice box.  They were doing the scientific research. Then the research stopped. My insurance ran out. I switched to the government's Medicaid program (Medi-Cal in CA).

The government took over and I wasn't the subject of interest anymore. No more research. I began the "Medicaid Shuffle" - I moved from place to place as I wouldn't qualify because I gained more skills, or abuses removed me, or the economy forced the place to close. It was no longer about research. It was about survival.

So I got better on my own. I did my own research. I'm giving my knowledge to the others out there who also don't have anything. (Oh, and excuse me on the documentation. I did the best with what I had. This is all from a psychologist's point of view not only because of my background, but as a medical doctor I definitely wouldn't have access to equipment. The same goes for therapy-crappy equipment, not all the equipment I needed, and the lack of a skilled set of hands.)

I didn't even talk about Medicare. Hey, that's what everyone is working for. Well it's only a step up from Medicaid. It's crappy too. It's also government. In the next paragraph I mention the government dental plan. Medicare don't worry. You don't even have one.

To Medicaid (the government) research isn't "medically necessary", just like teeth. Toothache? Pull it. Put your food in a blender, stick in a straw and suck it. That should be the government's new slogan, "We Suck."

WE SUCK