appeal letter from HFS

So I got a letter in the mail from HFS saying I had an appeal on March 3rd at 10 AM and if I didn’t answer the phone, the appeal would be dismissed. Megan doesn’t know why we got this letter as the appeal they filed was with Morgan County, not with HFS. I swear if HFS screws this up, I could scream. I think I’ve found a place that will accept me even if we have to get a feeding tube. It’s called the Emily Program in Minnesota. They were very understanding about the gastroparesis. They have to talk to their clinical team to see if they can accommodate me. I really hope they can. So I’m talking with Megan today at 2, and hope we can get things figured out, because I’m thoroughly confused!!!

Ray

Trigger warning medical

TW medical . . . . . . . So, I spoke to Alsana today, and they do not take people with feeding tubes. They said if i got a feeding tube, I would need a higher level of care. I also spoke to Eating Recovery Center, and they said that they do feeding tubes on a short-term basis. So, basically, if I needed a feeding tube long-term because of gastroparesis, no place would accept me. So once again, we don’t fit into a box of criteria. So why even try to get into treatment? Also, Medicaid is coming up with a list of places they believe will meet my needs, and they are giving that to Meridian next week, so we don’t even get a choice in the places they choose. Everything just feels out of my control!!! Eating disorder programs don’t understand chronic illness, and I was even told by Alsana that in eating disorder treatment programs, you have to eat food, and if I went there, they would need a menu of foods from my GI team that I could eat, because i couldn’t have a tube during programming. The thing is, I can’t take the only motility med they prescribe which is Reglin. She also said that people on feeding tubes are just existing, not living. I’m half tempted to ask Megan to stop pursuing the eating disorder treatment. Ray

to eating disorder clinics — our latest video

Here is our latest video. The trend of poor people going without treatment needs to change!!!!

 

Ray

Frustrations with the healthcare system

Trigger warning eating disorder and I don’t know what else

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So, I spoke to my care coordinator, Courtney, at the insurance company, and she said that as long as the state isn’t forcing them to pay for anything, they’re not going to. She said residential treatment will not be covered no matter what we do. She said I was going to have to find intensive outpatient or partial hospitalization program options. I told her that the closest one was two hours away, and she said, “well we provide transportation. “ I told her that that was not the point, but partial hospitalization was not clinically recommended by anyone on my team. I said to her, “do things have to get really bad before insurance will do anything? Or are they just going to let me die? I know my providers won’t allow that to happen, but still, I still wonder this. Why does the insurance have to govern the treatment we get when they are not even the professionals on my team? It doesn’t make sense. I don’t want to have to get down to 89 or even 85 pounds and have to do this continuous loop From inpatient directly back to outpatient, skipping three levels of care, but I really don’t see that we have a choice. As long as money hungry people are in charge of making the decisions about what they will cover for my healthcare, then I feel powerless. This is beyond my insurance company at this point. It is at the state level. I don’t understand why the laws in Illinois aren’t protecting us from this cruelty and depravity. It doesn’t make sense! Not only that, but my physical health problems are being blamed on my mental health. Eating disorders don’t cause hypermobile joints or scoliosis or any of the other symptoms of idiots that I have which doctors refuse to diagnose because insurance again won’t cover genetic testing. Insurance won’t cover my prosthetics to be replaced which I’ve had for 10 years. I don’t understand what I have to do to get the healthcare I deserve as a US citizen. I feel like I’m fighting for everything I’m asking for. I fought to have us recognized as a system. We have been fighting insurance for over two years at this point. Can’t even go to the doctor for a physical health issue without them saying that I need to get the Mental Health treated first before they can help with the other stuff. I probably sound like I’m complaining too much. I should be grateful that I’m alive.

Ray

treatment…. never happening…. trigger swear word

Trigger swear word

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So, I called a few places to plead my case and to ask if they had financial assistance, and told them we had a state based medical program, and you know what they said? They said that since we had and qualified for state insurance programs, we didn’t qualify for their financial assistance program even though our insurance didn’t cover their program. What a load of crap!!! So because of my economic status, we can’t get treatment, because we’re not privelleged enough to be upper-class citizens of America. Ugh!! Damn it!!!

Ray

HFS final ruling

So, HFS issued its final ruling and we received the 20 page letter today. They said that the insurance company did not have to pay for the treatment we needed and our request was denied. They also said that it did not find that what we were requesting was within their jurisdiction. They said it was more a grievance that we were saying that our insurance would not find an alternative treatment plan. So now, we have to first try appealing to the circuit clerk court in Morgan County, and if that doesn’t work, we take it to the district court, and then, if that doesn’t work, we go to the supreme court. So we are looking at another year maybe more before we can get the treatment we need. For now, we are focusing on school. We are getting a new Windows laptop from the Illinois assistive technology program next Wednesday we have no choice but to keep going. We are not going to give up even though some days that is what we want to do. We will fight as hard as we can. They won’t take us down without a fight!

Ray

WHAT ABOUT US?

QUESTIONS TO PONDER AND MY THOUGHTS: FROM ENIGMA

SOO, I’VE BEEN THINKING, WHAT ABOUT US WHO ARE UNDERWEIGHT AND SUFFERING MEDICALLY BUT WHO HAVE GOVERNMENT INSURANCE LIKE MEDICAID? LIKE WHEN THERE IS NOTHING IN THE STATE TO TREAT OUR EATING DISORDERS? WHAT DO WE DO THEN? THEY ALWAYS SAY THAT IT’S THE PEOPLE IN BIGGER BODIES THAT GET STIGMATIZED AND DISMISSED, BUT WHAT ABOUT THEE DOCTORS THAT DON’T WANT TO FIGHT OUR INSURANCE COMPANIES BECAUSE IT TAKES TO MUCH OF THEIR TIME? WHEN DO WE GET HELP? WHY DO WE HAVE TO BE TOL BY INSURANCE COMPANIES THAT THEY KNOW THE RISKS OF EATING DISORDERS, BUT THAT SOMETIMES PEOPLE JUST DIE BECAUSE THE SERVICES THEY NEED AREN’T COVERED? WHY DO WE HAVE TO SUFFER WITH LOW LAB VALUES BECAUSE THE INSURANCE COMPANY WANTS TO SAVE A FEW DOLLARS? WHAT ABOUT OUR LIVES? DON’T THEY MATTER? THE MEDICAL DIRECTORS WHO ARE MAKING THESE DECISIONS DON’T ACTUALLY GET TO MEET THE ONES WHO THEY ARE MAKING DECISIONS ABOUT. THEY JUST MAKE DECISIONS BASED ON WHAT THEY SEE ON PAPER. THEY MAKE A DECISION ABOUT COVERAGE FOR A MENTAL ILLNESS BASED ON PHYSICAL FINDINGS. IS ANYONE WILLING TO FIGHT FOR US, THE UNDERSERVED? OR, ARE WE TO “COMPLEX” FOR YOU TO EVEN TRY? WHO WILL TAKE THAT LEAP OF FAITH TO HELP US ON OUR RECOVERY JOURNEY? ALL WE ARE ASKING FOR IS HELP, AND I THOUGHT THAT WAS SUPPOSED OT BE OK. PEOPLE SAY TO NOT BE AFRAID TO ASK FOR HEP, BUT NOW THAT WE FINALLY ARE, WE’RE BEING TOLD WE ARE TO COMPLEX.

ENIGMA

hopeful update about the appeal

So got an email from Megan yesterday, and it said.. they will be sending a draft of their appeal letter to their supervisor and finalizing it, and then they will send us a copy. God, i hope this appeal goes through and we finally get treatment.. Should know something by Monday or Tuesday if they got the appeal and then the hearing has to be scheduled with the state. That could take a few months, but hope not!! we just need a break!! i hope against all hopes and odds that we will finally get the help we need!! 

Ray

I hate insurance!

So, we still have no updates from our insurance company. They want us to do an assessment at an ophthalmologist in St. Louis which is like three hours away. So it’s going to be three hours there in three hours back just for them to say that we are blind and that is not changing. Six hours for that? It’s ridiculous! We also found out that they still have not found a psychiatrist to do the insurance companies assessment of things as they put it. They said the psychiatrist were based on availability. By the time they get the assessment set up, it could be too late. This is just ridiculous! We want treatment!

Ray

Feeling accomplished

So, we got some news yesterday that the appointment we were supposed to have on March 5 cannot happen because of insurance. When we were with Meridian, we had transportation, but now that we are on straight Medicaid, we don’t. So our appointment had to be moved to April 3. Our caseworker, your member Sarah? Haven’t seen her in a month, anyway, she is taking us on April 3 to see this doctor. The entire reason we got this new doctor was because insurance wanted the diagnoses to come from a doctor. So the appointment that was scheduled in January cannot happen until April. That’s a little ridiculous since it is just establishing care with the primary care provider. Anyway, the point of this email, we have not had homemakers for three weeks, and we have had help here and there from our friend Carol. Well, I did the dishes this morning! Didn’t have any issues with dizziness or my heart rate or anything. Feeling very accomplished. Later today, our Department of rehab services worker is coming to have us sign forms that she said she should’ve had a sign last time she saw us. It is going to reestablish our homemaker services. In other news, the appeal that we are trying to get against Meridian is going to be tricky because the rule that we had for months to file or request the appeal is a state rule, it’s not something the insurance company came up with, so we don’t know if we can get an extension. It’s looking like we can’t. Anyway, that four months is up on April 19. Once that is up, we cannot fight them anymore to get them to pay for treatment. We are hoping for the best.

Ray