Warrior Woman, checking in.

Lisa, Kristen, Senator Feinstein, Nina and Me. Warrior moms all. 

I had the distinct honor and privilege to be one of three moms to meet with Senator Dianne Feinstein today. Senator Feinstein was visiting UCSF Benioff Children's Hospital and wanted to meet parents who could help her better understand and articulate the full impact the proposed medicaid cuts would have on those who benefit from the program, but are not one of those perceived to be in the typical category of medi-cal recipients. (Note, medicaid is called medi-cal here in the great State of California). I cannot tell you how thankful I am to have that opportunity. I am so delighted that the Senator wanted to hear our stories and that UCSF asked me to be one of those people.

I told her how much Maggie and our entire family benefited from the medi-cal program. Maggie qualified under a waiver program for those with complex medical problems. While we have always had private insurance, it did not begin to address her medical needs. Once she started receiving medi-cal we we able to get the home nursing we needed, and her equipment and co pays were taken care of.  It saved us financially, and improved and extended her life. I would be laying awake nights worrying now about what would become of Maggie if these cuts went through, and I still worry as a citizen, but I don't have to worry about Maggie anymore.

Senator Feinstein was interested. She wanted to know how Maggie's quality of life improved. I didn't have time to explain it all, but I told her about school and going to the mall and hanging out with her friends and being part of the community and the family - none of which would have been possible. I told her everyone has to live the life they were given, and Maggie got the chance to do that because she had access to excellent medical care at UCSF.

When I finished, the Senator listened to the other moms and asked pertinent question about their children. She wanted to know how they were doing, what the prognosis was and how the moms managed the care. She called us all warrior women, a title I will wear proudly.

When we finished the small group meeting, we proceeded to a press conference. (Please stand back, one at a time...). I made a speech telling Maggie's story again and tried to hold it together. It was difficult because aside from the press, the room was filled with UCSF staff, many of whom had cared for Maggie over the years. There is no way to convey the gratitude I have for them. I was shaky, but didn't lose it, Apparently, I  made a lot of people cry. (Booyah!) Kristen shared the story her lovely complicated, bold and entertaining daughter too. She has had a rough begining and continues to fight, but has an excellent prognosis.

The chancellor, the executive director and the medical director of the hospital all spoke passionately about the need to protect the medical care system for children and for everyone. And then the Senator spoke.  She is amazing.

Senator Feinstein is working hard to protect our children from the horrible cuts the proposed health care bill will make. Millions of children and adults will be effected and the health care system so carefully built will go into a tailspin. It has to be stopped.

You can help. Senator Feinstein urged the audience to call every senator you can - particularly those on the Republican side of the aisle and tell them how devastating this will be for the Maggie's of the world and for all the children. Think of your elderly parents, think of just about any child you love, know or have ever seen. They will be effected by this as will the generations of children to come. Maggie paved the way for the next generation to go farther and be healthier. Please don't let that have been for nothing.

Call. And tell your friends and family to call. This can be stopped. We deserve better. Please let the senators on both sides of the aisle work together for something that will work for everyone. I don't care what your politics are. I don't care who you voted for. This is beyond all that. It's the future of our children and grandchildren.

Spread the word.

Information age - or lack thereof

One of the more annoying aspects of my life sans Maggie is the lag in getting the information throughout the system Maggie was part of for so many years. At least a couple of times a week since she died, I get some call or reminder about something  from her wide world  that requires me to call and explain that she has passed away. I really don’t think that should be my job.

Initially, of course I had to and that was bad enough. In fact Maggie was supposed to be seem by a social worked on the Tuesday after she passed away as we were applying for In Home Support Services, something I had finally gotten around to starting. That Monday was a holiday, so I had to make sure the lady knew and didn’t show up at our house. I left a voice mail over the weekend and she called me early Tuesday expressing her sympathy and thanking me for taking the time to call. That was fine, in fact it was very nice. However, a few weeks later I received an official notification denying the request for services and it left me cold.

This morning I had to deal with the hospital from the last couple of days of her life. We never even received any bills in the past because in addition to our private insurance, Maggie has medi-cal which meant we didn’t have to pay co-pays etc.  Of course this time it didn’t work. It was jarring to see the bill outlining the services they provided in the ICU. But in addition to the services, It showed we owed a few thousand dollars as a co pay. Of course that is not correct. I called and explained that Mary Margaret had passed away during this stay and that this co-pay should be submitted to medi-cal. The woman told me medi-cal turned it down because they could not identify the beneficiary (Maggie).  I said well, that’s on you. You have all the information and it will have to be resubmitted.”  There was an impatient clucking from her side and she said, “Well Mary… “ I stopped her right there.  “I am not Mary. I told you Mary is deceased.”  At that point she offered to “call them for us” to see what the problem was.  I said simply “Thank you ma’am.”  I did not say, “That is your job. Don’t make it sound like a favor to me.”  I think that was implied.

 For the past several weeks it has been the Home medical company. They were great throughout her life. It was one of the few parts of the machine that actually worked like clockwork. Someone just needs to turn off the clock now. First it’s the billing that keeps coming and I am repeatedly told to disregard it. (Same reason as above) When they start threatening collection, I stop disregarding. I believe I actually spoke to the right person this morning.  We shall see.

Worse than the billing, though, is the continuation of the automated calls checking to see if the “oxygen user” is using the equipment at the same rate.  We received these calls throughout her time using the oxygen, but it’s really time they stopped now. Considering this same company came and picked up all the oxygen equipment three days after Maggie passed away, you would think they would know that things have changed; but somehow this part of the system was never notified.

 I have clicked off on them five or six times, but last night I decided maybe it’s time to deal with it. Of course it’s an automated call so you have to go through all the steps. They “verify” that this is the O2 user on the phone – and yet it wasn’t – and once the machine is satisfied with that, the voice gets friendlier –as if to say “ok patient, you and I are close friends. Here come the questions”

 First question, “are you still using the oxygen equipment prescribed by your doctor?”

 I respond NO. 

It was as though I shocked the automated voice. The friendliness in the voice disappeared and it was as though I was being chastised by this machine. The voice told me sternly that a representative would be calling in the next two to three business days. 

 Oh God. Please don’t.

Chronicling the circles

For the past several days I've been trying to undo a snafu with Maggie's state medi-cal insurance. We do have private insurance for her and the state stuff is secondary. Without this extra layer of protection we could never have kept Maggie at home and healthy.  According to the state websites, anyone with primary coverage is to be exempted from managed care because it won't work as a secondary layer; yet they have her enrolled in a managed care program.

Because it involves the state, I have to deal with a number of different agencies, each pointing to another as the problem. After getting the runaround for days I decided I'm writing to all of the agencies involved, county, state and Feds. (In fairness, this is not the fed problem, but the state is using Social Security in their blame game, so I have to include them in my letter.)

Don't be jealous of my life, but this is how my Friday started. And all it does is chronicle how I spent my Wednesday and Thursday.

__________________________________________________________

November 22, 2013

San Francisco Department of Human Services - Medi-cal

1440 Harrison Street

San Francisco, CA 94103             Medi-Cal ID# XXXXXXXXXXX

San Francisco Health Plan              Member id#XXXXXXXXXXXXX

201 Third Street

San Francisco, CA 94103

Social Security                                  SS# provided only on the Social Security Copy)

ANNEX 1ST FL 
90 7TH ST 
SAN FRANCISCO, CA 94103

RE:  Mary Margaret McDonald

        Disenrolling from Managed care

Please be advised that Mary Margaret McDonald continues to have private insurance and her medi-cal coverage is secondary. Accordingly, she should not be involved in a managed care program.

I have tried to contact each of the above agencies but find myself constantly being referred to one of the others. Both San Francisco Health Plan and Medi-cal advised me to contact Health Care Options. Health Care Options says the social security information does not include the underlying insurance. Social Security says the information is in fact on there and refers me back to medi-cal (note this is really not social security’s issue. It is a California problem.) 

Following each of the instructions was circular and I have not been successful in getting this information to the correct people. The worker at medi-cal arranged to have a supervisor from Health Care Options contact me. I was told to expect the call within 24 hours. It came at 8:30 this morning while I was in the shower. I returned it 15 minutes later and was advised I now have to wait until Monday for another supervisor to contact me. I’m sure you can imagine my frustration. 

I believe that Health Care Options needs to fix this but Mary Margaret need all of you to work together to make this right.  Mary Margaret McDonald should not be a member of the San Francisco Health Plan or any managed health care plan. Having primary insurance is a basis for exemption from managed care.

Her primary insurance is the same as it has been for the past several years. I am providing the information again

Anthem Blue Cross ID# XXXXXXXXXXXX

Member name: XXXXX XXXXXXX (her XXXXX)

Group # XXXXXX

A copy of the front and back of the insurance card is attached AGAIN. Please contact me to advise how to remedy this situation and to disenroll her from managed care

Sincerely,

Sara Coghlan McDonald

mother/conservator/designated payee

___________________________________

Don't you love all my titles? 

what did you do this morning?

Basking in bureaucracasy

After a brief break to deal with garbage cops and misbehaving home appliances I am back where I belong --. in bureaucratic hell.

I am still trying to work out  Maggie's medications with Anthem Blue Cross. This has been going on for weeks. They now require certain medications to go through their "specialty pharmacy" but that pharmacy will not work with medi-cal and the cost to Maggie is $150/month for two different medications. Maggie does not have $300 month and if she is not in this program the cost to her is zero. We like zero better.

I gathered all my patience and made the call to once again try to get this resolved. The woman was reasonable and informative and had me re fax the forms directly to her and confirmed they were received!! I asked her if a written explanation would help as Maggie's situation does not fit into any form every created. She said if I wanted to fax that I could.

Why yes, thank you, I believe I will.

I'm sure you don't want to see the entire letter, so I will just give you some excerpts.

I have been trying for several weeks to get assistance regarding an exemption from the Specialty Pharmacy Program for my daughter Mary Margaret McDonald. I have had several conversations with Blue Cross, who would refer me to Curascript, and countless conversations with Curascript all without resolution.  (In addition, I was receiving at least 6 or 7 Curascript robo calls every day asking for more information but receiving no assistance.)  Finally, I was advised by “Mr. X” at Anthem that there is a method of seeking exemption.   I followed instructions, obtained the proper forms, went to the doctor to have them completed , forward (faxed) the completed forms signed by Mary Margaret's doctor to exempt her from the program, but never received any response. I followed up this morning. I was instructed to fax the forms to a different number than is printed on the form (!), and did so. This morning’s conversation with Ms. X seemed to (finally) break some ground. She confirmed receipt of the form

.........

Mary Margaret receives medi-cal, California State program for the disabled or indigent, to help defray her extraordinary medical costs.  Medi-cal picks up the co-pays and provides coverage for some things that are not covered by private insurance. This includes the co pays on medications, which in Mary Margaret’s case can total thousands of dollars each month.  I have explained this to Curascript and to Anthem in the past, but I cannot make anyone understand the complexity of the situation. They have suggested that Mary Margaret  pay the out of pocket co pay of $150 per medication and seek reimbursement from medi-cal. First of all, Mary Margaret does not have $150 a month to pay and, in any event, Medi-cal does not work like that. There will never be a reimbursement.

I recognize her situation is very different from the typical insured. Most people on medi-cal do not have private insurance,  but she does.  However, the existence of private insurance should be a help, not a hindrance, to getting her the medication and services she needs.   

I think that last line is my favorite. I should receive a decision in two to three weeks, which is great, since I've been trying to get one for seven weeks already. 

Stay tuned.  

Please hold for the next Circle of Hell

There s new term out in the world and it seems to be quite popular: Specialty pharmacies. Never heard those words together until about a month ago, now I hear them every day. And every day I cringe just a little bit more. Apparently these "specialty pharmacies" only work if you don't have special health care needs.

I realize that begs the question, why would one need special medications from a specialized pharmacy if they didn't have special health care needs? Beg away. I can raise many questions, but despite my greatest efforts, I cannot find any answers.

We received a notice from Anthem Blue Cross a while back that certain medications could be obtained through their "specialty" pharmacy. It was touted as a service to the insured, which of course it was/is not. Rather than utilize the typical drug store and the pharmacist we are familiar with, Anthem wanted to make our life easier by having me order some of the medications from this "specialty pharmacy" and the be delighted when they were shipped to my door.  I couldn't do this with all the medications, mind you, only these "special" meds that warranted a "specialty pharmacy." That meant ANOTHER layer of hassle because I still had to get Maggie's "regular" medications through my neighborhood pharmacy. Hardly a service.

That happy "service" announcement was soon changed to a warning: "If you don't use our "specialty pharmacy" you will pay more out of pocket because your co-pay will be higher." I smirked at this one because Maggie's co-pays are paid through Medi-cal, the state program for the disabled and/or indigent. These amounts are not your basic $10 or $15 co pay either, the co-pay on one of these meds is something like $3500/month. The other is about $400. Yes, those are the monthly co-pays. Needless to say, I have to utilize the medi-cal plan or we could not afford the meds. In order to take advantage of medi-cal I have to get the drugs in California from a pharmacy that will work with the two systems. So I ignored the warning.

Now it's mandatory. In the space of just a few months, this new "service" is now required. This is problematic for me because the "specialty pharmacy" does not understand what medi-cal is and the chance of of the two working together is slim to none, especially since the required pharmacy is in Florida and medi-cal applies only in California.

I called Anthem last week and explained my dilemma. The guy gave me a waiver for this month, but said it was a one time deal. I would have to go through the "specialty pharmacy" beginning in January.

I contacted the "specialty pharmacy" and attempted to explain my dilemma. It was incomprehensible to them. They said, I would have to pay the co pay and then be reimbursed by medical. Nope. Medi-cal doesn't do reimbursements. I gave them all of Maggie's medi-cal information and the "specialty pharmacy" woman kept asking me for the phone number on the card. There is no such number and even though the card was in my hand, she could not believe that, saying all insurers put a contact number on the card. I told her, you don't understand, medi-cal is not an insurance company, it's the state of California. She said that doesn't make any sense. I pointed out it has worked perfectly well for several years until this "service" turned mandatory.

Maggie is a round peg and this is a very square hole. But she is not unique. She has complex health care needs, as do millions of other Americans. If her (ridiculously expensive) private insurance makes it MORE difficult for someone with complex health issues to get medication, one could wonder about their ulterior motives.

After my 4th or 5th round of calls I did learn that there are exceptions and if Maggie's doctor could fill out a form - one for EACH medication - perhaps Maggie will be excused from the "specialty pharmacy" rule.

Excellent. I got the forms and the doctor signed them on Tuesday when we had a regular visit. I met with the pharmacist to update her on all of this and then the other shoe fell.

Novartis, the manufactures of one of these medications just issued information to pharmacists to advise their patients who use inhaled Tobrmyacin (the crazy expensive one) that effective February 1, they will only dispense this medication through "Specialty pharmacies."

So Maggie  may or may not get "excused" from the specialty pharmacy  program through Anthem, only to be back in it because of the manufacturer.

My mistake, it's not a round hole; it's a Circle of Hell.

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.

Goin' Round in Circles all the time

Oh how I love to chase my tail. It is so fulfilling.

A week or so ago I received a bill from one of the medical supply companies. The bill is not enormous – just over $150. It is curious, though, because generally none of this is billed to us. We have private insurance that covers come of Maggie’s supplies and Medi-cal pays for the balance. (Or, more accurately, the balance is written off – but either way I do not get a bill.) This happens occasionally and eventually I call and the provider tells me to disregard it. I put it in my “pile” and forgot about it.

On Monday I received a call from the billing service for this company asking is I had any “questions” about the bill. (That’s a nice cover for Pay up, sister!) I said, well, yes, I do wonder why I received it. The woman checked and said this amount was part of my annual deductible and medi-cal does not pick up deductibles. That is incorrect and I very nicely told her so. Maggie is completely covered soup to nuts. I asked that she re-submit it for payment. She refused saying Medi-cal would only return it as a duplicate billing. Sigh. Ok, I said, I will deal with it from my end.

I decided to tackle this yesterday. I started with a call to my local SF County medi-cal worker. She was not in but a very helpful young woman told me they only handle eligibility and to call a number in Sacramento to get that question answered. I did so. I was on hold for over 15 minutes, but I busied myself sorting papers. When the call was finally answered, the woman asked me for my provider number. Wellll, I don’t know what that is – I am calling about my daughter’s medi-cal. “Oh, sorry dear, this line is for providers only.” Arrgh. She suggested I call to confirm eligibility.

Circular? Why yes it is.

I said, "Wait, let me ask you a general question before I get into another phone queue." I told her my plight and she said, “Something is not right here. First of all, YOU should not be dealing with this. The provider should call this number and resubmit the bill because Maggie has full coverage under x program, y program and z program and even if Medi-cal didn’t pick it up California Children’s services (CCS) would. You may want to call the county worker for CCS.” That was extremely helpful information and gave me the response I needed for the provider.

I called Maggie’s new caseworker at CCS and left a message. Then, armed with my new information I called the provider back. I did not call the national billing number, though, because this seemed to be a unique California issue. There are not too many people using government programs as a secondary insurance. I called the local office and spoke to a woman in billing. English was not her first language. She spoke English just fine but her accent was so strong, it was hard to understand her. That made the call much longer than it would have been. After repeating myself several times and repeating what she said until I understood it, I learned that I would have to speak to her supervisor, who was not available. Eventually I came to understand the reason they would not re-bill it is that this company is not a medi-cal provider.

I’m sorry, what? I have been using them for three years, and they are very attentive. I received a bill only once in those three years when I ordered something that was not covered under either plan. (Silly me, I was being environmentally conscious. I wanted to recharge a battery, which I had to pay for, but a completely new suction machine would be covered….no wonder there’s no money.)

I presumed I misunderstood the woman again. I finally understood that in fact they have simply been writing off the difference the whole time. I do not know why I never received a bill for the deductible before, but in all likelihood, it’s just timing. The deductible is blown through so fast it only applies to the first claim of the year. This year it just happened to be this company. I left a message with her supervisor because she insisted I do so, but that is just a waste of time. I also called the case manager at CCS and told him to disregard my earlier message.

You know what? $150 is worth the service I get from this company, or it was up until yesterday. Nevertheless, wouldn’t it have been easier if the billing woman had told me the truth in the first place instead of telling me that medi-cal refused the claim? She just made that up. That wasted about two hours of my life, increased my blood pressure and added gray hairs. MOREOVER, I still owe the $150.

Now the bill goes in a different pile – and it goes on the bottom.

.

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.

Big Head, Small Hat

My phone has been ringing a lot in the past few days. Other disabled individuals, children and adults are getting the same letter from the nursing agencies that we received two months ago. The home nursing agencies are dropping these patients left and right. It is not that the nursing needs have changed, and they don’t have doctor’s approval, but the patients are being abandoned one after the other. Maggie was among the first to be dropped and I was able to feverishly put something together.

Other people in the same boat want in on my deal, which is impossible. It’s impossible because I’m authorized only for Maggie. I am not licensed, bonded or anything else. I’m just a parent and my authority is limited to my own child. If they can't get in on it, they want to know how I did it, which I’m happy to share. I can tell them how but, in all honesty, I am not certain how many will have the ability to do this on their own. I'm not bragging here. It's hard. And I had known how hard, I might not have tried. It is a strain financially, a pain administratively, and a drain emotionally. Additionally, the time and energy required makes it exhausting. The people affected by this are doing everything they can to stay alive or to care for a family member. There aren't reserves for setting this in motion and then maintaining it.

I understand the issue intellectually and economically. All of these patients are on medi-cal, California’s public insurance for the poor or disabled. Medi-cal reimbursement rates are ridiculously low. The reimbursement rate is for the actual nursing hours only. It does not cover the administrative expenses, taxes, insurance, rent etc; all of that has to be paid out of the same nursing rate. In the city of San Francisco there are local taxes and fees that make it even worse. The nursing agencies are operating at a loss because the cost of caring for these patients exceeds the amount of the reimbursement.

I do not understand the issue morally, logistically, or socially, however. Without the skilled care these patients will die. Period. How can the agencies take these patients and then abandon them without anyone to care for them. Why are the agencies not obligated to find them other care? Where are their doctors? Why aren’t they screaming? Where is the state?

Society has an obligation to care for those who cannot care for themselves – this is not a political statement. It is just the truth. “A nation's greatness is measured by how it treats its weakest members." This quote has been attributed to Aristotle, Mahatma Ghandi, Harry Truman and Winston Churchill. I’m not sure which one said it or if they all did. It’s right.
“Pull yourself up by your bootstraps” does not work for the person who is a quadriplegic.

The patients will have to be cared for somewhere. If all these patients are placed in hospitals or nursing homes the state will pay anyway because the patients are on medi-cal. It will cost exponentially more from a pure monetary standpoint; and the human cost is incalculable. Caring for the patients in their home is better for the patient and the family (if there is one) Moreover, it’s cheaper for the State. The patients get better care at a cheaper cost in a place they want to be.

Of course it’s cheaper still if the patients do not survive. And they won’t given the current laissez faire attitude.

Perhaps that is the plan.

It’s harsh, but it is difficult to reach any other conclusion. Wall street bankers who screw up their institutions and the savings of millions of Americans may get a bail out, but those who need it most are on their own.

Maggie is stable and her nursing is in place. I understand the issue and I have a big mouth. It’s time to put on my bitch hat and start making some noise. Fortunately that hat is always close by, and it’s just a little too tight, thus making it so much more effective. Stay tuned.