If, Then

I don't know if this is a San Francisco phenomenon or if it happens everywhere, but almost anytime you call the City  or State you end up talking to a person for whom English is their second language. Many people complain bitterly about this, but that doesn't bother me.  People blame the accents but I don't think it's the accents that make it difficult. It's the bureaucracy speak.

After spending three days in a morass of red tape, I can safely say that Bureaucracy has its own language. And that language does not have any words for "please", "thank you" or "maybe."  It is limited to a structure of "if, then."  If you received that paper, then you must complete it. It doesn't matter how ludicrous, it's just IF, THEN.  If you have three heads, then you MUST wear three hats. It is rule based.

Maggie of course, does not fit in an IF, THEN world. Never has. never will. And it is my job as her advocate to break through that to get answers. It is frustrating. But I am persistent and eventually get what I need. This time I may have waited to long to begin the discussion, but hopefully I have prevented an error from occurring. IF that is the case, THEN I will be happy

Maggie receives Medi-cal, the California program for Medcaid. Medi-cal has been a complete lifesaver for us. Even with our private insurance, there is absolutely no way we could have kept Maggie at home and healthy without this program. It pays for things the insurance doesn't cover or only partially covers. It also used to pay for the nursing, though that is now paid through another program.

Medi-cal is now going to a managed care model, but the few beneficiaries like Maggie, who have private insurance, are not supposed to sign up for a managed care plan. Because of that I ignored the packet of material that arrived in January about choosing plans. It was sitting on the table in the hall for weeks unopened. Last week Maggie received a letter saying the State of California would choose a program for her if they didn't get a response by April 14. Hmmm. Maybe there's a problem here. I started to call.

The number in the packet is Health Care Options, only for making the choice or questions about the choices. IF there were other types of questions, THEN I had to call Medi-cal. OK. call medi-cal. IF she received the packet THEN she must choose a plan. Call Health Care Options. Lather rinse repeat until on about the 4th call to medi-cal, the woman tells me Maggie does NOT have private insurance. Yes, I assure her, she does. She always has. IF the computer says she doesn't THEN she doesn't.

 OMG

But she's right. It doesn't matter what I say, it matters only whats in the system. This woman is actually helpful and tells me I have to fix it with Social Security. Oh joy. Another huge bureaucracy. But I have a secret weapon. I have the direct line of the guy who did Maggie's intake for SSI and I still have to give him other information. I can call someone directly. It takes a day or so to connect, and he confirms that the private insurance is not in the system. (I must have checked some box incorrectly.) That is fixed. I start the other calls again. Three or four calls later, a woman in Sacramento tells me to instruct Social Security to advise medi-cal of the change and then call back on Monday and see if the records have been updated. I wonder why a federal office of Social Security would have to report to a State medi-cal office (things usually flow the other way), but I do as instructed. As anticipated, my contact at Social Security says, we don't really have any direct contact with them.

I decided to walk away from it and hope for the best. First. though I sent a letter explaining what was happening and that I would check back on Monday. Of course, they are FORM people. I'm quite sure they won't know what to do with a letter with complete sentences. Letters are "maybe" things. That does not compute in Bureau-speak.

IF I have to start this all over again, THEN I am going to scream.

Signed, sealed and delivered

Despite my best efforts to get all the paperwork done, I had to make another trip down to Social Security yesterday. Our lengthy visit a couple of weeks ago and the follow up phone call wasn't enough. Somehow in all the confusion we never completed the paperwork for me to be Maggies' designated payee for her benefits, when they start to come.

The call came from the worker I went to before. When I arrived he said he didn't know why things weren't approved already because her case is so obvious. That's nice to hear, but I never expected it to be done so quickly. He was busy and asked his co worker to assist me. Of course his co worker has never seen Maggie.

I had to complete a lengthy interview and show my good moral character and promise, under penalty of perjury, not to steal or misuse the funds intended for Maggie. OK. Sure. Of course now that Maggie is 18, she has to agree to this. Since she had already been down there, he said I could bring the paper home to have her sign it.

I just looked at him and then said, "Umm.... she cannot sign a piece of paper. She cannot hold a pen and would not have the foggiest idea of what she is signing." He said, "OK, just have her make a mark and then have two witnesses." I shrugged. "OK. Will do."

I vowed to have the conservatorship ready to go when she turned 18 to avoid precisely this type of thing; but of course I put if off and delayed and it has not yet been filed with the court. This was an excellent impetus to get that done.

As soon as Maggie arrived from school I solemnly put the paper before her and told her that she had to sign it so that she could get Social Security. After she dropped the pen four times I decided we needed to get this on video. It was hard to do because I had to help her with the pen and we were all laughing at the same time, but you will get the gist. We tried to make it as formal as possible.

I'm sure you will agree that Maggie's rights were adequately protected here. And now you can all witness it too.

In addition to being her designated payee, I am also the designated sealer and deliverer. Maggie signed, now it's up to me to seal and deliver it.

Please let this be the end of it.

Back to Reality, in super slo-mo

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We are all still exhausted from all the activity and excitement of the weekend. There is a giant basket of cards and things that we need to go through with Maggie, but she has been so busy or so tired that we haven't had time.  I opened all of them but I need to sit down with her and read them to her.

Life slowly returns to normal after the Big Birthday Bash. It's time now to get back to the day to day realities, like preparing her conservatorship papers for the court. Oh Joy.

Maybe tomorrow.

Still, things are getting accomplished, albeit slowly. I did manage to finish up the Social Security with minimal effort. Now we wait to see if the US Government thinks Maggie is disabled or not.

There is one other matter to deal with. I mentioned the small accident with the car last week after leaving the social security office. I did get the repair estimate, which is $3200 (eek!), The insurance will take care of most of it, but you know we will pay that back over the next few years.

The biggest problem is that the car will take like 9-10 days to fix. I have no idea what we are going to do without the van for that long. Maggie will be in school during the week, but there'as at least one weekend in there.  I could rent a car, but it doesn't really help me unless I can transport Maggie. If she stays healthy it's fine. We do have Golden Gate Park in our backyard and there are lots of things to do within walking distance. But is she gets sick, we are in trouble.

The car is definitely damaged but  it's completely operational and drives fine.   I could wait to have it fixed, but I will still have this problem at some point. What to do, what to do?

 I'll decide when I have more energy.

Security, social and otherwise

You have not lived until you've spent 90+ minutes at the Social Security Office with Maggie. We went to do her intake as she is turning 18 (tomorrow!). When they gave me the appointment, I asked if it would be better to wait until after her birthday and was assured that one is eligible as an adult disabled person 90 days prior to her 18th birthday. Ok. Let's get this done.

The social security office is in a federal building, so there is a TSA like security system in place. Only less efficient. When you roll up with a wheelchair as loaded with equipment as Maggie's it takes a while. In fact it took us about 25 minutes to get through security. Again,  they were very nice and just doing their jobs, but OH. MY. GOD.

As is often the case, there is a very large man with a big booming voice doing the security. He could easily be a bouncer at a nightclub and toss people out on the street. He was kind, but he was going to be very thorough with Ms. Maggie. He'd seen her type before, she obviously looked suspicious to him. Every single piece of equipment had to be explained, examined and x-rayed. WHAT IS THIS? A suction machine. WHAT IS THIS? That's her computer that she uses to communicate? TAKE IT OUT OF THE BAG, I NEED TO SEE IT. Done. PUT IT BACK IN THE BAG. Done. WHAT IS THIS? That's the pole that we use to attach the computer to her wheelchair. WHAT IS THIS? That's her oxygen tank. WHAT IS IN THIS PINK BAG? Oh, that's a spare tracheostomy tube and supplies in case the tube in her neck falls out. (The guy looked a little queasy on that one). And WHAT IS N THIS PLASTIC BAG? Oh, that's an ambu bag in case she stops breathing. (He teetered a little bit there too). 

Everything went through xray, fine, but the guy knocked over the oxygen tank and it started to whistle. They all jumped at that noise. WHY IS THAT MAKING THAT NOISE? CAN YOU STOP THAT NOISE? I explained that the tank has to be upright and stood it up. The guy barked at me to lay it down for the xray. Ok, but it's going to whistle. When it came through the xray it was "smoking" and that freaked them out. I told them it was just leaking oxygen (which is why it needs to be upright.) 

While all this is going on scary looking guys were whisking right through security without a second look. We were just getting started. They wanded Maggie all over the place. He asked if she could put her arms out to her sides and I told him no, but she could possibly do one at a time. Up until the wanding, Maggie was amused. But when he started waving that thing in front of her she started giving him the stink eye look and I was trying not to laugh. He had no idea that she was DONE with him. 

After all that I thought we were too late for the appointment, but we made it into the building with exactly 3 seconds to spare and waited less than a minute to be called. That brief moment of efficiency was not to last, however. Even though the information I received is correct and one can apply for SS 90 days before they turn 18, the computers aren't programmed for someone to enter the system before 18. I figured that out in about 5 minutes. The person doing the intake did not want to give up, though, so we sat there for 90 minutes while he very kindly tried to make it work.I kept telling the guy we could come back and he said, you are here now, let's make it work. 

The guy was working, and checking with his supervisor, The woman at the next desk was helping him. Meanwhile Maggie was charming everyone in the place. She was laughing and reaching for me and cracking up whenever I talked to her, which was about every 30 seconds. Then she was growing weary of the waiting, though I was the only one that really realized that because her demeanor did not change. It was her words.  Maggie was using her talker. "Mom. Go to car Mom. Drive to school." Ok Mag, in a few minutes. "Mom, Saturday is my birthday mom" Yes, dear I know, that's why we're here. Mom I want to go now"

So do I, Maggie. So do I.

Finally we set up a telephone interview for Monday so the computers will recognize that she is 18. Even though I filled out a form for two hours at home, spent nearly two hours getting to and sitting through the meeting yesterday and now I have to do another 90 minutes on Monday, I jumped at the opportunity for the phone call.

Anything to avoid going through security with Maggie again. She is not to be trusted.

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Birthday Prep, Government Style

Birthdays are hard for many parents of disabled children. Birthdays are a reminder of another year past, more milestones unmet, and for those whose disabilities started at birth, are a reminder of a very sad day in our lives. This has become easier with every passing year because it's just part of the whole deal, but it's still there. This year may be particularly rough. This year Maggie becomes an adult. That means all sorts of changes that Maggie may be ready for, but I am certainly not. For example, Maggie has her appointment with Social Security tomorrow.  Because she will be 18 on Saturday it's time to get her into the system.

 I spent over two hours completing her Adult Disability Report. Yikes! It's an online report that certainly does not consider a person as involved as Maggie. I had to list ever medication, which is easy enough, every doctor, which is fine but I did not include the doctors at the various hospitals because I have no idea of their names. The form also asks for every medical TEST that she has had. I'm pretty sure the internet would explode (as would my head), if I actually had to list all of them. I don't think I could even tell you all the tests she had done last year, let alone in her life. It simply cannot be done. For every test I thought of I just said this was done multiple times, which is true. Hopefully I didn't forget anything pertinent. They have more than enough information and everything else will be in her voluminous medical records which they will request.

I do feel sorry for whoever gets her file.

Tomorrow morning I take her to the Social Security Office to do the actual application. I think I could have done it online, but a lot of it is unclear when you are dealing with a person who cannot speak or sign for herself.  Once they see her, it will be a lot easier, I am sure. It's not as though there is a question that she is disabled and I suspect the intake person will have a way to expedite the forms which are basically designed to confirm disability status.

It will be good to have this done.  Anticipation is often worse than reality and I'm banking on that here.

As for the rest of the birthday melancholy - it will be buried in the festivities! Maggie is ready to party down and I am happy to join her.