There's been a little complication with my complication

After speaking with a very helpful woman at the Austin Social Security office by phone and then confirming what she told me online, I set off on what I thought would be a quick trip to the Social Security office to change Keith's birthdate. The trip to the office itself was pretty simple, the real trip started once I got in the door.

As requested, I had brought Keith's birth certificate, Texas ID, Social Security card, my Power of Attorney, and the signed form SS-5. I laid out it all out on the counter for the clerk so we could get the birthdate changed and get on to the next set of hoops in our quest for Keith's health benefits.

The clerk looked at the assembled information, scanned the birth certificate and honed in on the signed SS-5 form. He picked it up to look closer and then told me he didn't think that Keith's stamped signature was going to be acceptable to the Social Security Administration. He went to check with the office manager and I heard her shrill voice in the background, "Oh, no! We do not accept rubber stamp signatures in this office!" [this is somewhat amusing when you consider that just about every official document you receive from a government office is finished off with a 'rubber stamp' signature, lol].

The clerk came back to the window a few minutes later and confirmed that despite all the evidence arrayed in front of him, the signature immediately stopped this transaction. I explained to him that the signature was Keith's legal signature since he cannot use his hands due to the progression of his disease. The signature the SSA was denying has been accepted on all legal transactions up to and including Federal banking transactions from when Keith was a bank officer several years ago. He said that was fine for the other organizations, but the Social Security Administration was directed by the Homeland Security office standards which are separate from any other Federal standards.

I asked him for a solution. He had two suggestions:

1. Have Keith come into the office with me or an attendant so his hand could be held & directed to make 'his mark' [as an official policy, this sounds shady to say the least]; or
2. Have Keith's doctor write a letter stating that Keith was not competent to sign his name, therefore I or someone else could sign for him.

I just stared at the clerk for a moment and then said "So, let me get this right. Rather than using his legally approved signature stamp to correct an error created by the Social Security Administration, you suggest that he either be physically 'directed' to sign or get a letter declaring him incompetent so that I or someone else could sign for him? And those are the only legal options that the SSA allows?" He said, "Yes, those are the only options available."

At that point, I had no choice but to gather all the paperwork, IDs and the certified birth certificate, and leave the office before I did something that required the security guard in the corner to put down his book and take action.

As I drove down I-35, I kept thinking about the movie Brazil and looked up some quotes when I got home. This one seems to sum my experience pretty well:

Sam Lowry: I assure you, Mrs. Buttle, the Ministry is very scrupulous about following up and eradicating any error. If you have any complaints which you'd like to make, I'd be more than happy to send you the appropriate forms

Medicare Improvements for Patients and Providers Act of 2008

H.R. 6331 To amend titles XVIII and XIX of the Social Security Act to extend expiring provisions under the Medicare Program, to improve beneficiary access to preventive and mental health services, to enhance low-income benefit programs, and to maintain access to care in rural areas, including pharmacy access, and for other purposes. Read more HERE.

Intellectual Oxygen!

We're still contending with oxygen issues. I found the website Portable Oxygen tonight which incredibly informative and translates the "medi-speak" into language that is meaningful.

Pete Wilson's summation of the Medicare rules of oxygen delivery were especially informative and I believe will be very helpful to our case.

If you or anyone you know needs to learn more about O2, I highly recommend checking out Portable Oxygen!

The charges...so far.

I don't know if they'll add more charges for lack of insurance or reckless endangerment or resisting arrest or fleeing the scene of an accident...I sure hope so!

Rude Awakening by a guy who was NOT sober at any party!

Keith's PCA Ken knocked on our door at 6:30 this morning and said "I think my truck has been stolen and Ruth's car is totaled" I went outside and I was speechless. Apparently, a drunk driver had jumpe d the curb, hit the back of my car and rammed into Ken's truck with such force that it was knocked into the street. His truck wasn't stolen, it had been towed by APD. With the insulation of the house and the noise of the machines back here in bedroom, we didn't hear a thing. Here's the story from the neighbors: This guy was speeding down the street, jumped the curb, lost control and wiped out the cars. After he saw what happened, he jumped out of his car, ran down the street taking his clothes off and tried to get into his house which is just around the corner. Our neighber down the street, chased after him, grabbed him and held him for the police. The driver is booked into Travis County Jail. He has a whole slew of charges including possession of marijuana, driving while intoxicated and failure to stop and give information. Oh, yeah, he also doesn't seem to have insurance. We're waiting for Progressive to call back. Here are some photos of the damage, thank God none of us was hurt.

Oxygen deprivation

Keith got a call from Walgreen's Home Healthcare yesterday. Apparently Medicare has informed Walgreen's that only one delivery of oxygen per month will be covered. Currently, the liquid oxygen is delivered weekly.

Yeah, you heard me right, Medicare has declared that Keith can only get oxygen once a month.

Some solutions:

• Get a detailed explanation & prescription from the doctor as to why Keith needs an average of 3L/minute of liquid oxygen. [Um, because it's the only way to stay alive on this planet?]
• Fill the garage with oxygen canisters and store a highly flammable liquid during the hot Texas summer.
• Find a spare $2000/month to pay for the other 3 weeks of oxygen

Naturally we're working towards the first choice, lol.

I'll let you know what happens!

Ruth

Thank you for shopping at Mayo...

My friend Margaret  just got back from the Mayo Clinic. You can learn more about why she went on her facebook group page To Find the True Cause of My Crippling Fatigue Crazy.

Here's her report on what happened:

just prior to going to the mayo clinic, my symptoms exacerbated: i had a mylar rash, felt like i had a fever (sometimes chills, too), and once experienced warmth in my legs.

Mayo reminded me of that movie Gattica. There were no sick-looking people, or people w/ oxygen or no hair; just old people. The first physician I saw promptly told me he would not accept my saliva or other samples, indicating low sIga, b/c they were not deemed accurate. He then interrupted me as I began my symptom list and told me neither chronic fatigue or another new bodily symptom I cited "would be addressed." He then handed me a 2-year old printed-off-the-internet article (not even the Mayo article) on Chronic Fatigue Immune Deficiency Syndrome (really!?). Then he made me an appointment with the psychiatrist. Due to an emergency, he was unable to meet w/ me the following day, but a different, and very kind physician did. I asked if my new & weird symptoms had an explanation (shogren's, as my current doctor thought, Lupus, due to the rash, etc.), and he said, "yes, chronic fatigue immune deficiency syndrome." I asked if this meant my immune system was more susceptible, and he said, "no." I asked how I was supposed to take care of my children if I can't lift my head, and he said, "I'm so sorry." I get that there's little interest in helping tired women, but 10 vials of blood later, armed with only a high iron content and possibly a low Vitamin D level (again), they were content to send me home (kick me out). They didn't even have the results of my circadian pee test (everyone holds a GAP drawstring-looking bag w/ a jug that holds their pee in it). That was the highlight: the nurse who handed me the bag with the jug said, "Thank you for shopping at Mayo."