Sunday, August 12, 2007


So, I've just returned from seeing Michael Moore's "Sicko."

Yeah, yeah. Everyone loves to hate him. Yeah yeah, he misrepresents. I know. Thank God for the Michael Moores out there, who call it like they see it, who aren't afraid of being accused of pandering. Yeah, a boatload of sick people taken to Cuba is a publicity stunt. But damn, it got them health care. I'd go too if I needed to. Besides, what is flying a fighter jet in front of a banner saying "Mission Accomplished" if not pandering at its best/worst?

50 million Americans are uninsured. 250 million Americans have health insurance. I, by sheer luck and a very tolerant boss, manage to keep my insurance. I'm not sure for how much longer, but for now, I can work full time.

Good thing too. My next Remicade bill is $1000. I make less than $1000 a month, people. My husband, less. We're grad students. I sat there and realized what a staggering risk I am for my husband to take on. I could financially ruin him with a bad flare, or a bad reaction to my next injection. I could drag him under. Then I realize we're both so far under from student loan debt that there's really nowhere for us to go. What's more debt at this point? $4000 for Remicade (if I were uninsured), $1000 a month for provigil. This is my life.

What shook me the most was the story of a young man with kidney cancer. All of his treatments were denied by his insurance. He died.

It reminded me of another story, of another young man living not too far away from him who also had kidney cancer at an obscenely young age. My dad was in his early 40s. His insurance also denied all the experimental chemo. So we tried other drugs, went into thousands of dollars into debt while he flew back and forth to Houston. The drug he was denied? It's now the gold standard for kidney treatment.

The bills were astronomical. We paid it anyway. When he died at 46, everything he'd work his whole life to give us was gone. His business eventually failed. His life insurance found a loophole and didn't pay. My mom eventually had to enter the workforce again at age 50, having been my father's office person for so long that she had no confidence in her ability to do anything outside of the home. In fact, work stress has contributed to her divorce from my stepdad after 6 years of marriage.

The couple in the film didn't go ahead with any treatments. The man died.

Was that better? To not finance the house, the business, to leave something for the wife and kids?

Hell no. I read somewhere , in an essay written by someone who has since died of her cancer, that children experience time differently than adults. Those years of having my dad alive -- sick, but alive -- were horrible, confusing, stressful years, but they were years where I at least had my dad in my life. My little sister only got him for 14 years and that seems like an obscenity. I barely remember being 14 at times. Those years were worth it.

Why do we live in a place where this is a choice? Why do I always feel this horrible "health insurance" monster hanging over me? It's been that way since I was 23 and no longer on my mom's insurance -- every move I make is dictated by health care. If I were not constrained by the insurance question, I have no doubt I would make more money. My skills are a bit like my dad's -- I tend to pick up a job here, a job there. A little freelancing here, tutoring there. But when I'm working 9 to 5, like now, all my energy goes to maintaining, not producing. I think that's why I wasn't a great grad assistant. I could teach. I could write. I could be a student. But I wasn't able to handle them at the schedule and pace needed to maintain insurance.

Canada is looking better and better all the time. If it weren't so damn cold....

Situation resolved, but sadly so

So, I spoke to my family member from this post.
The client is question will soon be moved to an Alzheimer's skilled nursing facility. They were all sad, but relieved. Part of the frustration with him is the fear that he will hurt himself or that one of the other clients will get hurt while they are out hunting for him.

It's the end of his life in the community. But he's not in the community right now anyway. "Community" is a buzzword so often for a smaller institution. None of his staff has any training on how to help him. I hope he's better off where he's at.

I don't know if my call made any difference. But I called on a Saturday, he had an evaluation, and by Wednesday it was decided. I wonder if the fear of the State got the ball rolling, or if it was finally time.

I get so tired, you know, of forcing people to do their jobs, of making people take responsibility for what they've said they will take responsibility for. I'm tired of cursing the darkness. I'm ready to light candles.

Saturday, August 4, 2007

Hear that?

That's the sound of a whistle blowing.

Hear that?

That's the axe falling on my family's member's head for violating HIPPA. Okay, I haven't heard that yet, but I will. Soon. And it will be my fault.

I just hotlined a complaint to an out of state office regarding a group home a family member works in. One of the residents in the group home has Alzheimer's in addition to his developmental disability. His situation has rapidly declined to the point that it's unsafe. My family member is calling me freaked out because he keeps running away from the group home, refusing to get in and out of places, tying to jump out of a moving car. There are only two staff members and six residents. Many times, there is only one staff member. They can't safely retrieve him when he runs and hides.

There are alarms on the doors but they are not working.

They are not allowed to lock the doors for safety reasons.

All of this information could get my family member fired. Why? HIPPA. Health information Privacy Protection Act --grrrrr.... HIPPA is supposed to protect your vital information from people who don't need to know it. Insurance agencies can't access my records without having a valid reason. They can't look at my dad's medical records, see he died from cancer, decide that I too might be a cancer risk, and refuse to insure me.

(Wait. They do crap like that anyway...)
What HIPPA does in reality for the community of people with developmental disabilities is increase the culture of fear and silence that so many people have lived with for so long.

A friend of a friend in this field was no longer allowed to refer to her clients by name -- just their case numbers. Try hollering at a seven year old boy with autism "Get out of the road, case #4562!" How dehumanizing is that? It's like we're so ashamed of him, we can't even say his name.

If I'm out and about with a client who has autism or is in a wheelchair and a parent strikes up a conversation, I'm to give no info -- just let them stare and think "That poor kid." Most of the time, I tell parents of the child that I will probably talk about the child and ask if that's okay. Most people say "yes." They WANT people to know that S., running back and forth and hollering on the swingset, is not disturbed or trying to upset their children or being a brat. He's autistic. He likes to run and holler. I explain that to the parents and to the children in the park, who are understandably a little nervous when all 6 foot of S. comes bounding up to them to give a hug. I say "He's still learning to talk, so he hugs to say hello." They might not be great with it, but they understand.

Even with his mom's permission to say that information, I could get fired.

This blog makes me fireable.

To communicate with anyone about all that I've seen in this field, the people I've loved, what I've learned from them, where they are now, makes me fireable and sueable. Caring at all about people in this field has always been a bit of a liability because administrators take advantage of that -- it's now, thanks to HIPPA, a legal liability as well.

For my family member to call me crying and upset because this man tried to jump out of her moving car means she transmitted info to me that I had no business knowing. So she could get the axe. And J.C. who I love very much, lives in a group home owned by that administration, and I need to not burn my bridges with them if I am able to see her. They are just the type of place that rewards loyality to the administration over love for the clients -- like the Bush administration in micro.

I am going to hope that my report remains anonymous, like the nice lady on the phone said it would.

I am going to hope it was the right thing to do, that the case manager of this indivdual will investigate with sensitivity and come up with a better solution for him. I am going to hope that the group home will reply with concern and not with anger. I am going to hope that this was the right thing to do. But I'm tired of a field that gives underpaid caregivers great responsibility but little autonomy. I'm tired of worrying about who can make things right. I just have to do it and hope that it was the right thing.

Waiting to see what happens....
Afraid, even, to tell my family member what I've done....