Sunday, August 16, 2009

summer is coming to an end

this has been an enjoyable weekend of ME time, no schedules, no huge plans. some groceries, some laundry, a small project to help me get organized.The kids had a mellow weekend too, I almost feel like we are in cocoon mode right now, plotting against the school days that will come a week from this wed. Ciarra starts 5th grade, Jesse starts High School, and kristin goes to college. Time rushes by, and for this moment, I just want to hold onto all of us and the easy days and keep them close.
alas, life needs me to make some decisions and get ready. I created a bulletin board project for our entryway, something useful and semi decent to look at. Im no artist, to be sure, but I wanted something nicer than your average cork board.

basically, this is a corkboard covered with fabric, divided into sections for Jesse and Ciarra (Kristin keeps track on her own) and for the family in general. It makes it that much easier to remember school papers, sports schedules, Dr appointments, etc. I need to get a communication folder going, and update Ciarra's notebook with most recent IEP, etc. and i really need to clean out my office bins for this years homework and stuff.

C's teacher has been in touch, she seems wonderful. she asked me about adapting some stuff, and has some great ideas of her own. We will meet this week to go over anything we can think of to make this year easier. One of Ciarras best friends moved this summer, and she was sort of the buttress that brought C into the group at lunchtime, I wonder how that will go now that jenna is gone. she was a true gift to Ciarra socially, including her in everything. I worry.

Jim and I are doing well, he has been very loving and sweet the last few months, we made a commitment to one another to be a couple and not just parents. We actually had a date night the other night, a movie, it was nice.

Saturday, August 15, 2009

what I would never change-and what I feared

how could I have ever feared a life with a child who would bring so much joy?

Monday, August 10, 2009

irreversibly prevented from being or becoming participating citizens

this article talks about the elderly and disabled and health care, and quotes Dr. Ezekiel Emanuel, the brother of White House Chief of Staff Rahm Emanuel. He has two key positions: health-policy adviser at the Office of Management and Budget and a member of Federal Council on Comparative Effectiveness Research.

the article quotes him directly as follows:

Hastings Center Report, Nov.-Dec. '96

Ezekiel J. Emanuel

"This civic republican or deliberative democratic conception of the good provides both procedural and substantive insights for developing a just allocation of health care resources. Procedurally, it suggests the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed. Substantively, it suggests services that promote the continuation of the polity those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citi- zens in public deliberations-are to be socially guaranteed as basic. Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed. An obvious example is not guaranteeing health services to patients with de-mentia."

The fundamental challenge to theories of distributive justice for health care is to develop a prin- cipled mechanism for defining what fragment of the vast universe of technically available, effective medi- cal care services is basic and will be guaranteed socially and what services are discretionary and will not be guaranteed socially. Such an approach accepts a two-tiered health system-some citizens will receive only basic services while others will receive both basic and some discretionary health services Within the discretionary tier, some citizens will re- ceive few discretionary services, other richer citizens will receive almost all available services, creating a multiple-tiered system

"The patient, or micro, level entails determining which individual patients will re- ceive specific medical services; that is, whether Mrs. White should receive this available liver for trans- plantation"

Obamacare scares the heck out of me, and it should ANY parent of a child with a disability, and especially those of us raising children with an extremely high rate of dementia as they age. This is not an email fwd, this is not someone elses words. This is me, fearing for our kids.