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.