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....

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