June 19, 2014 at 10:57 AM (Uncategorized) (, , , , , , , )

I am at a loss. The Medicaid HMO that is supposed to be handling home health care for me is not. Plain and simple. I am receiving nursing care and dressing changes for my foot which is good but my health is in jeopardy because I cannot go to the wound care clinic thar I need to go to to monitor the wound on my foot. The reason I cannot go is that I cannot properly dress without assistance at the same time and that assistance is being withheld because the Medicaid HMO that I am under cannot get its provider database in order to pay those independent aides who work or want to work for me. I have someone in the afternoons but I need someone in the mornings. I’ve checked with agencies as well and they’re unable to find anybody that needs to work in the time frame that I need them who is able to get paid for their time. Because I don’t have assistance getting a protective boots onto my right foot in the morning the wound is growing bigger there is too much pressure on it. My health is at risk, because the private health insurers which  the state of Ohio put in place to assist its most vulnerable population with community-based care are a hopeless non functioning mess. Clients cannot post requests for aides. Most aides have not been paid for over a month now. My Medicaid HMO does have a database where they can enter their information once they provide the correct identifying documents to caresource via fax but the number and type of these documents needed to become a provider are never clearly stated: Temporaries working the phones ask for different material each time they call and they are told that certain items are valid one later it turns out they are invalid. ( as an aside ineffective or sloppy or lazy phone customer service work really burns my bacon because I used to do that for a living  and I know that if I didn’t have all the conditions and illnesses that I have now I could  do better than these people. ) There is also a problem with the payment system. Even when it is used correctly the amount
of the first hour is always calculated differently than later hours used and the Medicaid Hmo system does not seem to take that into account. It is unable to provide the aide with their correct hourly rate, to let them know what they are paid. This is important because there have been changes in state law about what they should be paid and how they should be paid.

That means that the current state of affairs is that any aide who is not getting paid because they are improperly loaded into the system or not loaded at all has refused to work and in some cases left clients until they are paid. The threat of losing their license seems to mean little to them because they’ve been working so long without pay. But I’ve done all the looking I’m going to  do. It should not be my job to chase down procedures or fixes for a computer system that should never have gone online if it was unable to pay those who are scheduled to serve the most vulnerable Medicaid patients in the state. You’d think they would have learned a lesson from a less than stellar roll out of, but apparently no one in the State House was watching TV or reading newspapers when that went down. This change its been discussed since 2002. They have had a very long time to design this and get it right. I’m going to name names now because I imagine the other two Medicaid HMO’s that are allowed to do business in the state are having the same type of problems with paying their
people, because all three have the same pool of agencies or independent home health aides to work from. It is a very difficult job that these aides do and they should not be expected to work without pay because some programmers sitting somewhere else couldn’t get their s*** together.

I’m going to write I’m going to email I’m going to call and I’m going to Internet like crazy until Caresource, United Healthcare, and Buckeye, provide services required by the state to Medicaid patients and provide the monies to their caregivers so the caregiving can begin or continue. the three companies required to replace Medicaid in the state of Ohio for those Medicaid beneficiaries who had Medicare as well I.e dual eligibles.

My caseworker alone has 93 clients to see
to. That’s one small sliver of one of the companies cases.

Another case worker is said to have stated  that caresource is just overwhelmed with the new people and clients are just going to have to stay with whomever they have for now. Even if whomever they have is inadequate for their needs. This is mind blowing  but I suppose I should have expected it. Medicaid patients are the most invisible people in this country so if something goes wrong with our care nobody generally talks about it until after our health is compromised or after we’re already gone.

This is not an acceptable state of affairs not for me and not for my fellow dual eligibles in state.

You will hear more of this from this space as it goes on

Permalink 3 Comments

Mr. Romney/Mr. Ryan: Medicaid as block grant

September 9, 2012 at 10:42 AM (Uncategorized) (, , , , , , )

Mr. Romney/Mr. Ryan:

Let me just state right up front:

I don’t have enough money to pay for a tax cut for you and those in your tax bracket.

If you get your wish about Medicaid…cutting it by 30% over the next ten years and changing it into state block grants…in effect asking me to pay for your tax cut, this is the direct effect it could have on me:

Let’s look at the best case scenario first. At the end of the ten years, I’d arrive at a scenario where

I’d lose 30% of services for the same amount of spenddown (read money-I-presently-have-to-pay-before-Medicaid services start.)

Right at this moment, I would lose my present doctor a rare young fellow who listens to me, and get a new physician who’s job it is to tell me what drugs, and procedures are no longer covered, and therefore no longer really necessary… I’d have to reargue the case for a certain kind of asthma medicine for me, or which anxiety medication is best to help with my depression.

Therapy that among other things, slows the progress of my incurable lymphedema, ‘wakes up’ the lymphatic system to get things moving, physical therapy that does a bit to counter the tightening stiffening muscles that come when you have cerebral palsy and get older, that I’ve been dealing with, the therapy that has been at least partially covered, up to a certain dollar amount, would reduce by 30% (It’s limited now, and I have to give it up entirely ’til January, even before you get your mitts on it.)

In order to pay for your tax cut, I’d have to pay 30% of my medical transport costs…presently the only transport I have available in this county to get to a doctor or specialist. (FYI full cash cost of one round trip to my lymphedema therapist would be approximately 180.00 one way. I was going 2x a week. If you can, you do the math.)

That’s best case.

Middle of the road case: In addition to the above cuts in order to pay for your tax cut, my spenddown would go up…money that I now use for rent, non covered medical expense, food, phone bill, internet access…

Worst case: the 30% cut means cutting *people* not just services, and since I’m relatively new to the program, in order to pay for your tax cut, I could be one of the ones to go.


Still lose my doctor…

All medical transportation costs

and 20% of medical expenses covered by my remaining Medicare would become my responsibility. (I’m eligible for Medicare due to disability…many of my fellow Medicaid beneficiaries *only* have Medicaid, so their situation would be even more desperate than mine.)

My earned benefit of disability only goes so far Mr. Romney…
I’ve given up a lot by my estimation:

I love books. I had 400 or so. I still like reading books you can pick up and hold in your hand. I’m now down to 30

I love movies. I used to have about 150. I sold them to pay for groceries. Now I’m down to about 30 of those too.

I had to give up a loved pet because there was no contingency money for her if she fell ill…and not enough to make sure both she and I had the basics. And, for what it’s worth I loved her enough to do what was best for her, not put her on top of a damn car for a roadtrip.

Luxuries like a dinner out or a movie out don’t happen unless someone else is kind enough to pay. (This is as it should be. I am in no way asking anyone to subsidize a trip to the movies for me. Doesn’t mean I don’t miss them. )

In summation, Mr. Romney, and Mr. Ryan too.

Mr. Ryan has been called bold for advancing the plan that would force me and every single present Medicaid beneficiary to pay for your tax cut, Mr Romney…

What’s bold, or brave about forcing benefits away from poor people and people with disabilities and forcing more of their small store of money into your pockets?

Smells like cowardice to me.

Permalink Leave a Comment

Medicaid is no free ride

July 5, 2012 at 5:56 PM (Uncategorized) (, , , )

  I hereby give permission, if anyone is discussing Medicaid with their conservative relatives and friends (Since the Supremes decision to make it optional brings it back into the news a bit) to use the following personal story to underscore the fact that 1. Medicaid is not “free” healthcare, and 2. Does not cover everything.

In Ohio, if you are on Medicaid, there is a portion of that called a “spenddown.”
You have to either incur your spenddown each month,(as in some vast hospital bill you could never hope to pay, in full) or pay your spenddown each month before benefits from Medicaid kick in.

Mine is 204.00.  I can’t get by with just incurring that because I now need personal care inside my home  So I pay 204.00 each month as my share of that care.

Neither Medicare nor Medicaid will  cover lymphedema supplies. (I’m on both)  Socks, compression stockings, velcro compression materials are an ongoing expense of about 50.00 every month.

Repairs and batteries for my powerchair are questioned because of an ambiguity in the Medicaid change (the creation of a bidding process on repairs to save $$$ at the beginning of 2011. Long story short, the company that made my chair can’t bill Medicaid to fix my chair, (“our bid wasn’t the lowest” ) and the ones that could bill them don’t want to repair the chair…”It’s custom, we don’t have to…”

But, I couldn’t live independently in the community without Medicaid. Because of Medicaid I have transportation to medical care…covered prescriptions are discounted, and I’m finally on some physical therapy to try to combat muscle atrophy/rigidity that happens to some sedentary folks with cerebral palsy as they age.

I’m listing all this out because it is  concrete proof that Medicaid, the thing I have that keeps me out of some human warehouse at age 50, the thing I’m quite grateful to have, is not free.
Not by a long shot.

(It’s important to note, legislators, that this kind of help costs the state about half as much as warehousing me, which they were darn near ready to do in February…when I said, “Um no, I’m not going into a nursing home because only skilled staff can put on two bandages no matter how important this bandaging is to my lymphedema. Just no.” And eventually got some outpatient patchwork solutions going.

Medicaid Beneficiaries are not lazy.

Keeping my care going, making it to the appointments, making necessary lifestyle changes monitoring my lymphedema daily, carving time out to do home therapy…..etc, while trying to take care of a rather feisty little LexiTheMiniatureSchnauzer…
…Takes at leas as much mental effort as a part time job, and often a full time one.

The optional Medicaid expansion offered by the ACA  will be a vital benefit to the lower income people it would serve…But it’s not some license to sit on the couch and order up expensive medical tests.  It’s a flawed, nutty bureaucratic nightmare that nonetheless is better than going without.

And I’m sick to death of libertarian philosophies, being applied on the ground in such a way as to obscure and mischaracterize the necessity of these services.

I was quite encouraged watching Laurence O’Donnell and Howard Dean subbing on Morning Joe this am,discussing forces within the medical community that might just force governors who are presently ideologically opposed to the Medicaid expansion to go ahead and take the money in 2014.

Push back when you can…when they start ranting about socialism and entitlements.

Permalink 3 Comments

Santorum, Peter Singer and “culling.”

February 19, 2012 at 2:01 PM (Uncategorized) (, , , , , , , , )

Thanks so much for making me feel squeezed this morning /snark.I’m feeling goddamned stuck in the middle between the utilitarian streak of some on the left, [Peter Singer and his, “Well a disabled child isn’t really a person,” remark on Chris Hayes show a few months ago comes to mind.] and nutcases like Santorum.

Evidently Santorum made the argument earlier today that the reason prematal testing is part of the Affordable Care Act is to cull people with disabilities out of existence. There are so many vital reasons for prenatal testing….he cannot concieve of more than one outcome after a genetic test. Whatever.

We’re smart enough to know Santorum is being vile, using this for political expediency. He, like every conservative today is talking out of both sides of his mouth. “Save the babies!” on the one hand, and “never pay for their care!” on the other. Not that there isn’t a genuine left utilitarian streak that PWDs have to fight all the time.

Uses of prenatal testing need to be discussed, and not in Santorum’s context. It needs to be discussed to avoid PWD invisibility on the issue.

I state categorically that I would never presume to “argue” with any woman who chose to terminate on the basis of disability alone. I wouldn’t know enough about the circumstances that caused her to do so. In general, I am against, seriously against, terminating on the basis of disability alone, but it isn’t my place to impose what I think on another woman faced with this, and there are individual cases (no brain at all?, etc) where I think I’d step out of my general opposition)


When a pregnancy is terminated for disability alone, there is sometimes, depending on the condition involved, an unavoidable message sent.

“We want a perfect society. We don’t want you.”
“We’re uncomfortable around you. You remind us of our own mortality.”

“We don’t believe in our own ability to handle a child child with disabilities.” (IMO this is a really sad one. I’ve seen so many handle what they did not think they could, and be glad.)

Or the one that both the left and right use.

“I/We can’t afford it.”

I’d imagine my parents, Steven Hawking’s parents, Maysoon Zaid’s parents, might have had thoughts like that.

Those arguments like to be couched on the left sometimes as against the mother.

They aren’t. They are against being devalued. They are against giving anybody any leg to stand on to cut existing supports for us.

But it’s also important to point out the dumbestassery of all of any of the Rightward folks that talk about this in terms of “culling.” They cull, themselves. All the time. Every time cuts in Medicare or Medicaid are done. When the health care industry puts profit ahead of care.

When they cut Medicaid in Alabama for persons over 21 years of age, ventilator dependent quadriplegics died. Or had to flee the state.

When a pharmaceutical company didn’t self correct in a timely manner *in the name of profit* they allegedly may have caused my husband’s death and the death of many like him.

Call Santorum on the vileness of the remark, absolutely,

but lefties, clean your own utilitarian house too.

Permalink 2 Comments

Physical Rehab, Reinvent, Retrench-Insanity

January 20, 2012 at 8:17 PM (Uncategorized) (, , , , , , , , , , , )

My legs are not wrapped.  This vital process will not happen the way I was told.

Because of my cerebral palsy, I cannot wrap and unwrap by myself.  there may be a way to figure part of the unwrapping, which I will work on tomorrow, but the wrapping is flat out impossible.

I was told my aftercare until I graduate to compression socks would be covered under Medicare part A.  That someone would come to the house and unwrap my legs, help me clean them (not entire bathing, simply my ankles and feet. Rewrap my legs since they would be certified to do it. )

Now, the home health care agency will not wrap my legs (its a non-skilled service)

There is no way to send someone certified to wrap that would be covered under Medicare part A

I’m supposed to be set up with an outpatient clinic instead, that Medicare may not cover, even under part B.   I advised of the transportation problem making the cost of that prohibitive, they said then I’d have to be in a rehab place or an SNF [ even tho medicare wouldn’t cover a return—-] until I graduated to compression socks, or live with someone who could transport me.  I won’t go into details here, but living with my parents would be, um…problematic and risk my mental health.  I don’t mean that snarkily or as satire.  It’s a real issue.

I am not leaving my home.  I worked too hard to get here.

I AM NOT LEAVING MY HOME!  Not over a 45 minute process.  I AM NOT LEAVING my home.

So, it’s be institutionalized or lose all the progress and leave myself at risk for congestive heart failure, or come up with a way to be transported to these lymphadema clinics every day, pay for that, and pay for either 20% or 100 % of those costs.  Even having Medicaid waiver fixed would not necessarily solve this problem.

I’m contacting the patient ombudsman for Medicaid in my state, to get the transportation set up, at least.  I’m also contacting my church.

But that has to wait til Monday, and the damn legs have already begun to ‘reinflate,’ because all the home care folk can manage is a simple ace bandage.

And yes, I’ll be dumb enough to stay at risk to stay in my home.

There’s such a thing as quality of life and I will not surrender it to bureaucratic forces that cannot speak to each other or bend to necessity.

Permalink 2 Comments

Next page »