Health Insurance

I never watch daytime television. I used to, but found time slipping through my fingers. This morning I had to ice my sore shoulder, which requires sitting still for 30 minutes or so. I turned on the morning news and watched President Obama sign the Healthcare Bill into law. The debate is over. This is now the law and over the next several years we will see changes for many people. It will be interesting to see how the provisions of the law are actually put into action. I know it will be expensive, but I also know it will make a change in the lives of many many people.


My family has been lucky. We have always had health insurance. However, health insurance works best when you are healthy and need it only occasionally. When Maggie was born, we quickly learned the limitation of the health insurance and the devastating effects those limitations can have on a family. The insurance we had when Maggie was born was considered quite good. However, it had a lifetime cap of one million dollars. Once the policy paid out that much, we were on our own. Maggie’s first hospitalization was 11 weeks in the NICU. The bill was $550,000. We knew that was only the beginning. She would go through that million-dollar cap in less than two years. We were trying to deal with the shock of Maggie’s complicated diagnoses and the surgical road she faced while the realization of financial ruin faced us. We were completely freaked out.

Financial ruin did not happen to us. My husband changed jobs and started over with a new insurance policy. That took the immediate pressure off us, but co-pays and non-covered things were still taking a huge bite out of our budget. When you added that to the financial hit we took when I had to stop working, it was still daunting. We had not even considered her disabilities, at this point. We were running as fast as we could to deal with the increased expenses and 50% reduction in income.

Maggie’s disabilities were becoming more and more apparent and therapy and equipment added to the financial and emotional stress. There were programs to help her, but we were still reeling. We were saved by the State of California. When she was about two years old, she was the first child in San Francisco to be “institutionally deemed.” This is a fiction that opens the door to additional programs, especially medi-cal (California State health insurance). The way it works is that a child as complicated as Maggie could easily be institutionalized. If she were in an institution, the additional state programs would be available to her. Keeping Maggie at home is an obvious benefit to her, her family and a financial benefit to the State. It is a win, win, win. In order to encourage this, the state “deems” her to be institutionalized and opens the door to those programs.

I will not lie. Meeting Maggie’s needs is very expensive, but doing it this way is better and cheaper than an institution. I am an unpaid case manager who works 100 hours a week, so I can tell you right off the bat that the state is saving a lot of money by having mom do the work. This is the price I pay to get to keep my daughter at home and it is worth it. We could not possibly have kept Maggie at home without this program. Even with it, we struggle to keep all the balls in the air.

I know there are thousands of people out there who are not as lucky as we are, they do not have health insurance or have a catastrophic illness and find their health insurance is not enough. I don’t know exactly how this new Health bill will work, and I don’t know if the cost will cripple us, but I do know that a government-sponsored program can make a difference in the life of a person and a family.

Maggie is an extreme example, but she is not unique. There are thousands of kids like her and gazillions of less extreme examples. Whatever you think about the wisdom and cost of this healthcare bill, please remember there are real people with life and death issues who may be able to survive and lead better lives because of this.

Celebrate in triplicate

Maggie’s birthday is in a couple of weeks. Birthdays are often difficult for parents of disabled children because it is like a flashing billboard reminding us of how different our kids are from their non-disabled peers. That is not so much the case with me anymore, but it was for several years. I still dislike her birthday time, for other reasons. In Maggie’s world birthdays mean more than gifts and celebrations, it is time to check in with all the service providers to renew, update tweak or even discontinue services. And Happy Birthday to you too.


This started yesterday with our visit to the doctor at California Children’s Services (CCS). This one is actually semiannual. The physical and occupational therapists give their report on Maggie’s progress toward her goals, set new goals for the next six months and recommend the frequency of service. The PT recommended cutting her therapy in half. I think that is a crock, but I did not fight it. The budget is in tatters in California and I am not sure what benefit she would get from someone who does not want to work with her.

I can accept the fiscal realities. Everybody is feeling the pinch, and Maggie is no different. What I will NOT stand for, however, is having reports contain inappropriate or incorrect information to justify cutting services. Maggie’s web of services is so complicated that a wrong piece of information at point A can be plugged in at point B and screw up more pressing services. The PT gave me his draft report and I had him change it to be accurate. If he can justify cutting services with correct information, I would not fight him. I do not agree with it, but I have to choose my battles.

Monday is Maggie’s IEP, (Individual Education Program) meeting. This is the school district’s mandated annual meeting to address Maggie’s educational needs and what services the school district will offer to meet those. For some parents this is a very contentious meeting. That has never been my experience and I do not expect it will be this time either. There may be some cuts here and there because the San Francisco Schools are B R O K E, but I am more interested in the program as a whole. There are no transitions this year, so I expect it will be fine.

After the school district, I have to meet with Golden Gate Regional Center (GGRC) for Maggie’s annual review there. I cannot remember the name of that document IPP – Individual program plan, I think. This addresses Maggie’s needs that are not school or therapy related. This agency has been reimbursing me for the nursing for the past couple of years. I do not anticipate any changes there either, but I do not think I will rest easy until I know that is the case. The budget crises looms large, but California is going to have to pay for Maggie one way or the other. It is cheaper and better for the state (and for Maggie) to stay at home than to live in an institution, so I doubt her care will be affected.

Because Maggie’s disabilities are so extreme, I do not have the same angst over these meetings that other parents have. Maggie’s needs are obvious and the services are in place. I do have to be vigilant that the reports are correct, though because undoing a mistake is very difficult. Agency B will rely upon incorrect or understated information about her medical needs from Agency A and the services adjusted accordingly. If it results in being offered a service we do not need, that’s easy; but more often it puts me in a position to fight to keep something she DOES need.

As you can imagine, all of this really kills the mood to celebrate her birthday. The real celebration comes when all this is complete.

This year, just for good measure, I am having my shoulder surgery the day before her birthday. I should be a barrel of laughs for Maggie.

Splashdown!

have returned to earth after yesterday’s trip into orbit. The reimbursement check was ready this morning and I went straight to the bank and waited for the teller I know best and she agreed the funds would be available tomorrow so I can pay the nurses. Often times, because the reimbursement amount is significant, the bank holds the check for several days. I have been assured that sufficient funds will clear so that I can make payroll tomorrow. I am relieved, but still fuming. I do not like to be reminded how close we live to the edge.

Maggie’s health remains in question. She made it “all day” at school today. (Note: The summer school ends at noon.) I did get two calls from the nurse because of different things coming out of various tubes. Individually none of them is particularly bad news; collectively, however, they demonstrate Maggie is likely fighting off a bug. I hope that she can make it the last couple of days at summer school. We then have. about five weeks to get her tuned up and back to fighting form.

During the school break, we are trying to schedule a couple of exams under anesthesia. Actually, it would be two exams, by two different specialists, but one anesthesia. That is better for Maggie, but it is difficult to schedule two very busy pediatric specialists for the same day. It will happen, though. Once they look around her lungs and her gut, we may have a better idea why certain symptoms keep happening as they do. If nothing else, it will give Maggie something to write about for her “What I did on my summer vacation” essay.

I need to finish a project because I’m not sure how I will be able to work once she gets out of school. I have been reviewing and gathering ideas for a couple of weeks . I waanted to work on it all week, but yesterday was lost. I really hope there's no more drama with her services because I can't afford to waste any more time.

I have to power through. Maggie better cooperate and stay healthy for the next 72 hours!

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.

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.