03 March 2011

Continuity of care

When we were finally given approval for medicaid for Liam, it came with a caveat. We had to have an aid.

It has turned into such a pain in the hiney.

We started having regular aid service recently after a few month lull and after a so-so aid,we got a very personable, funny, loving woman. She was great. I even left Liam with her after knowing her just a short time because she was just that good with Liam.

But, she had to miss two visits this week and they sent a different aid in. Each time. So two more new people to meet Liam, get a quick summary and then leave. Liam only requires a nursing aid two hours a day 3 times a week so by the time a new person gets in here, gets the hang of things, it's already time to go.

The nursing office called this morning to let me know that yet another aid would be coming next week and would be Liam's permanent aid. Four different aids in a one week span. I asked her what happened to Liam's permanent aid he just had. She had no idea. She said she was from a different office and was just at this location for today. She was sorry she couldn't be of more help.

Kids like continuity. People like continuity. It's the reason why when children are in the hospital you get the same staff day after day. It forms familiarity, comfort, and ease. And not just with the child but with the parents as well.  When we were in the NICU we were told we would get the same nurses every time. Because they knew my child, knew us and were able to put us at ease when we had to leave him there. Home nursing is no different. I'm allowing some stranger to come into my home and care for my child on my behalf. I don't know this person's background, their skill, their level of maturity with disabled children and yet I am supposed to just allow them in to help me with my child so we can have medicaid.

I don't know if the nursing agencies are aware of the problems that parents are experiencing. This is our second agency with the same results: Continual rotating of nurses in and out until they find one that will fit, not when we find one that fits; No notification when a new aid comes in, they just show up at the door; Abruptly stopping our aid services with one that we get along with really well.

It's just very frustrating to say the least.

I wish NC would get on board like other states and allow the parents to pick their own aids. If the state has to pay a nurse to take care of Liam for me several hours a week (when Liam doesn't even need a nurse, he just needs an aid), why can't I get to pick who comes into my home? Why can't it be one of our choosing?

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