Wednesday, January 12, 2011

Frugal Pioneer

I know there are many who feel the cost of caring for the disabled is too high. Most of those are too polite to tell me their position, but there are always a few who let me know. Fortunately I'm (usually) too polite to tell them what I think of them.

So it all works out

I have to admit I had some hesitation about talking to a reporter doing a story on the financial aspects of raising a child like Maggie. When Rob Reuteman, the author of the piece contacted me I asked him specifically if this was going to be a "these kids aren't worth the money" piece. If it was, I didn't want to be part of it. He quickly assured me that was not the case and I found his story to be realistic without being alarmist. (check out the story here)
As we march into the abyss of inevitable budget cuts in California, I will not justify the government's support of Maggie and her peers. It is the responsibility of a decent government to care for its most vulnerable citizens. Besides, I know two things to be true: 1)We are saving the state a ton of money and 2) Maggie is a pioneer and deserves the government support.

The care Maggie is getting here, though costly, is far far far less expensive than it would be if she were living in a facility. She would have all the same costs PLUS lodging. Also, we can deal with things like her current pneumonia at home instead of in the hospital. One week in the hospital is about two months worth of in home care. In all of last year Maggie spent three days in the hospital, compared to weeks and weeks in other years. It is not that Maggie is healthier than in previous years, because she is not. It is because we can catch things early before they get out of hand and because the doctors know she will be well cared for at home and the we have everything we need.

Maggie is absolutely a pioneer and she benefits from the pioneers who came before her. The American government has always supported pioneers. We're not looking for a land grant, just the ability to live the life the medical advances saved. Medical technology and practice is improving every day. Medical advances are much faster than the social infrastructure. They can save people, but society doesn't have ability properly care for them. Society fumbles along to create the services that weren't there. By the time they are in place there is another level of care necessary. Maggie is in that "next level."  But she's not the last. I have my daughter today because a mother a generation lost her daughters and the medical world figured out how to change that. Maggie is living the life she is so that a little girl a generation form now won't have to because medical advances will continue.

There is no question that caring for Maggie and others is expensive. Is it worth it? Yes, I think so but admittedly I'm biased. She's my daughter.

 Let me ask you this. Is your daughter worth it?


  1. Very well said. I am the mother of a 5 year old little girl in Oregon who has many similarities to your daughter. Reading your blog often lifts my spirits and helps me to imagine what our future might hold. Currently in Oregon we are losing respite funding and are in the process of applying for the more medically involved program that will allow us to keep our caregiver and keep our daughter at home. Like your daughter mine requires 24 hour care. While I completely agree that our government should care for the most vulnerable I am more than angry that my insurance company has found a loophole and won't pay for at home and much superior, in our case, care. They will pay for her to live at the hospital for medically fragile children at enormous cost but will not pay for an overnight provider in my home. It is insane. Anyhow my rant of the day...I could go on and on... Thank you for your blog...Maggie seems like a lot of fun.

  2. I'll apologize for the curses, but holy crapola and shit, YES!!!!

    And this post is brilliant in its simplicity. I've been feeling sick to my stomach a bit for days after reading about the Governor's proposed cuts to IHSS.

  3. Well said, as usual, Sally.

    I especially hold onto this sentence: "I will not justify the government's support of Maggie and her peers." This non-defensive attitude is a critical statement of the value of Maggie's life. Her life does not require justification. And she would not be alive if not for the care she has been given.

    Mine and every child. Barbara


Hi Maggie loves your comments. It may take a while for the comment to post, but you will see it eventually.