The Paper Chase

We continue to try to make our tall skinny house work for Maggie and her wheelchair. It is an ongoing battle and getting around requires lots of rearranging. I think nothing of stepping on the seat of the easy chair in Maggie’s room to get the back door opened or to get to the bathroom. If Maggie is sitting in her chair in her room, that is the only way to get by, unless you carefully maneuver the chair out of her room. It is faster and easier to just climb over furniture. I do not even give it a thought. The problem extends beyond Maggie’s room, though. The downstairs of the house is in constant flux to accommodate Maggie’s needs.


With the boys away at school, I have two empty (or somewhat empty) rooms upstairs in which I could work. Instead I work in a corner of the dining room just outside the door to Maggie’ room. This way I can help the nurse or tend to Maggie if the nurse is not here. The dining room is our “everything” room. We do not have a hallway leading to Maggie’s room; you have to go through the dining room. The table is off center in the room so that her chair can easily fit. We eat every meal at the dining room table (when we are not in front of the television) because what was once the breakfast room has been converted to Maggie’s room.

All the office equipment is in one corner of the dining room, and the dining room table collects everything from important papers to junk mail. Because I use it as an office, it is often spread out with my projects, nursing papers, or any number of other things.

I am buried in paper in this room and there is no escape.

Periodically I organize it all and vow not to let it get like this again. Today is that day. First, I remove the junk. Junk mail, yesterday’s newspaper, printing jobs gone awry etc. go right in the bag. You can reduce every single pile of paper by at least 1/3 by keeping a recycle bag handy. Once the obvious junk was gone, I decided to go further. I was amazed at the amount of waste we generate, and most of it is not our fault.

We receive dozens and dozens of insurance statements every week. Every doctor visit, x-ray, medical supply delivery, oxygen fill hospitalization and everything else sets off a flurry of papers. We get bills we are instructed to ignore pending the insurance companies handling. Once the insurance company pays its portion, we get another set of papers telling us so and advising what we owe, if anything. I have papers verifying that the oxygen tank is filled, and that the supplies on my shelves have been delivered. I know that. I do not need a piece of paper telling me what I already know.

Everything goes through the insurance company, whether it is covered or not. The insurance company then sends a statement telling whether or not the claim has been honored. With each claim are two pages giving instructions on coverage disputes in three languages. Sometimes they save postage and put more than one claim in an envelope, but still each claim has these two extra sheets. One I just opened had 12 pages, four were claims and eight were garbage/recycle. That means for every paper I kept I threw away/recycled three others, counting the envelope. That is an incredible waste

Every time I get a prescription filled at Walgreens, I get three receipts and a set of instruction on using the drugs. I understand the necessity of this. However, do I really need a page of instructions for 13 medications every single time I refill them? Of course not.

How can I stop this madness? We used to have the recycle bin right next to the mailbox in the basement and a lot of stuff never even made it upstairs. That worked for a while but then we had to move the recycle bin to the backyard so that we could get Maggie’s chair though the basement to the backyard where the elevator takes her upstairs. I remember long ago reading about a man in Minnesota or somewhere cold that used all of his junk mail to heat his home all winter. I would happily send this stuff to him because he is a genius, but I would rather not get it at all.

Back to the piles. Unfortunately even after culling through the junk, I actually have to do something with the stuff that is left.

Do me a favor. Do not print this.

Your Tax Dollars at Work

As Maggie’s favorite fictional character Junie B. Jones would say, “I have frustration in me”

Today was the annual meeting with the social worker from the Regional Center. This meeting always happens right around the birthday of the client, which for Maggie was two days ago. Hmmm. Maybe that is why her birthday is often so melancholy. I know what’s coming.
The Regional Center is a private agency that contracts with the State of California to provide state services to the developmentally disabled, like Maggie and thousands of other Californians. They are the gatekeeper of sorts when it comes to services. They can open that door and get what a client needs or stand there shooing folks away. There are many of them in various regions of California (hence the clever name). Ours is the Golden Gate Regional center, which is, by reputation, better than many.

California, like many places, is really screwed up financially. We may actually take the cake in that department; because, in addition to the financial crunch being felt across the country, California has an inept and ineffectual state government that spends more time deadlocked over issues than anything else. I think about five legislators are really running the entire state. And they are doing that with smoke and mirrors. Reimbursement for nursing is being cut 3%, which is tolerable, but there is an indication of more cuts to come, which is not.

The annual meeting is designed to determine what needs the client has and what will be done to meet those needs. The social workers are stretched beyond capacity and generally cut and paste reports from previous years to get the paperwork done and signed as quickly as possible. It doesn’t have to be right, just complete. They comply with the letter of the law, but no one -- and I mean NO ONE -- is paying attention to the spirit.

The documents were already filled in and I was just supposed to sign them indicating everything is peachy keen and working perfectly.

Except it is not.

And I didn’t.

The poor woman was somewhat flummoxed. She was very nice and understood my concern. She wanted me to sign it anyway and PROMISED to change it when she got back to the office.

Sorry. No can do.

She will email it to me for review before I sign. That is better. Nevertheless, the documentation itself is all so silly.

I feel strongly that documentation should be correct, especially as Maggie approaches adulthood. I understand the budget constraints. I understand that not everything will be fixed. Concerns should be documented even if they cannot be addressed by the system. Seems logical enough. Bzzzzzzzzzz, wrong. For example, there is a section called “unmet needs.” That would seem to be the perfect place to list needs a client has that are not being addressed. But no, that would be logical and therefore BZZZZZ.Wrong again. You just cannot do that.

You can only use the unmet needs section to address to needs that the state is already capable of addressing. If there are needs outside of the current array of services, they are not “needs” as defined by the state.

I’m sorry…what? That means there are no “needs” outside of the system. And we all know that the system is absolutely perfect and operates like a well-oiled machine.

Pssst…..your well-oiled machine is leaking. Sproinggggggg.