House of Cards in Tornado Alley

I live in a house of cards and there is a strong wind blowing.

I started this blog almost a year ago when there was a disruption in the space time continuum of caring for Maggie. At that time, the nursing agency we had been with for several years suddenly pulled the plug on Maggie and other similarly situated kids/patients whose care was paid through Medi-cal. (California state version of Medicare). My house of cards was fluttering all around me. I thought I was going to lose my mind then and started writing about things. It turned out that that writing and sharing Maggie’s life with all of you has been cathartic and relaxing.

In the months since I had to set up a business and find, schedule, hire and fire the nurses on my own. I also have to pay them; but on the 11th of every month, I am reimbursed for the expenditures of the month before. The reimbursement comes from the state through the Golden Gate Regional Center. I had to borrow money to pay the nurses for the first month but since then I have used the reimbursement from the previous month to pay the current wages. I pay the nurses on the 15th and at the end of the month; hence July 15 I owe the nurses for the first 15 days of the month (two shifts a day) and I use the reimbursement from my expenditures in June to pay for it. I cannot get ahead and have not been able to pay back the initial loan I had to take out, but it is basically working.

In order to be reimbursed, I have to complete archaic paperwork that must be completed in pen. I have to list every single shift a nurse worked, what time, how many hours etc; and a separate sheet is required for each nurse. Then I have to do an additional worksheet totaling it all for them. It is a pain, (Note the paperwork is not the problem, but I cannot understand why this cannot be done online or even saved in my computer, but no.) The paperwork must be submitted on the 1st of the month, which I do by fax and then mail the originals. That gives them 10 full days to prepare the checks. It takes me at least a day every month to do that – this in addition to the scheduling, record keeping, pleading and cajoling to find nurses and covering shifts where this is unsuccessful. Note, when I cover the shifts there is no reimbursement.

This month the 11th fell on a Saturday, meaning I could not pick up the check until today, the 13th. That is problematic. I have to get the check in the bank and cleared before I can distribute the funds on Wednesday. To avoid any delays in this delicate balance I agreed to pick up the check rather than have it mailed. The first month they mailed it and I never received it – I have no room for errors so I agreed to pick it up. Picking up the check requires a trip downtown, parking on the street, going up to the 6th floor, and signing for the check. It is not far, but overall it takes me about an hour to get there, pick it up and get to the back.

This morning I arrived early because I knew I had to get right to the bank. If I talk to the bank manager, I can get the funds released in time for the 15th. Today I waited and waited and after several minutes, I was told my check was not ready.

Me: I’m sorry, what now? (sensing cards fluttering off the top)



Accounting guy: “Oh. Some of the checks are not be ready. Maybe tomorrow, so you will have to come back. (more cards fluttering by).

I told the guy “Maybe” was not good enough. He didn’t care. Nobody cares. I talked to the manager who sent out another person to talk to me. She said we had a problem last week because the mail was late. (4th of July – Not sure how that effected anyone because the 4th was a Saturday and they already had the extra day because the 11th was also a Saturday.)

I was broken. I am working as hard as I can to make this whole thing work. Yes. I know I am the parent. Maggie is my daughter and my responsibility. However, it is more than anyone can handle on their own. There are programs in place to assist her and to assist me. If they do not work, they do not help. I have already taken on the management of the entire process, in addition to my role as primary caregiver, keeper of supplies (itself a full time job) nursing assistant, transportation engineer and -- oh yeah - mom.

I understand that glitches happen. I do not understand why no one has the courtesy to contact me and save me a trip downtown, and perhaps give me the weekend to try to figure out some other financial arrangements. I do not understand what I am supposed to do about paying these women on Wednesday. I do not understand why the organizations that are supposed to provide help are making things harder.

As I headed back home, I was fighting tears of frustration and anger. It is all so delicately balanced that a glitch like this, coupled with the bureaucratic lack of concern, sends me over the edge. I was really trying to keep it in perspective when then nurse called from school to tell me that Maggie is not well and is (once again) coughing up blood. Great. I went straight to the school to get her. Maggie is home and she is ok. It is likely she is brewing something, but for now, she is doing well. I just have to make sure all the shifts are covered so she gets the care she needs. Then run to pick up six prescriptions from the pharmacy.

Then we can start it all over tomorrow.

After that we just wait for California to balance its budget. Undoubtedly the powers that be will cut more services to Maggie and her peers so that it can pay for more prison guards or something.