I just 'lost' aid number 21 (since I've been keeping track) and with a track record like that over a three year period, that means the next one won't stick around either.
It's not because we are a hard family to work with. It's the system. It's broken and it doesn't work for the little children that it is supposed to be supporting.
1) You have to have your CNA and be employed with an agency in order to become an aid for Liam. Liam doesn't even require "nursing" at all. But because a CNA is mandatory and you have to go through an agency, we can't just get an awesome nanny or hire a good friend. And having your CNA doesn't mean much to begin with anyway. I typically have to train every single aid who comes in on how to feed Liam through his g-tube. Apparently g-tube feedings isn't something home health aids need to know when getting their level 1 CNA.
2) The pay is ridiculously poor. The most defenseless people in our society are children and the most defenseless of these are those with special needs yet the gov't can't even pay the people charged to care for them more than $8.50 an hour. With no possibility of a raise. I can get an amazing aid in here, have her working for me for a year, and she will still only get $8.50 an hour. It's offensive to expect aids to come in here, put in the time, and never get rewarded for the good care they give. There is no reason to stay in any one home if the work is difficult. They can move on with no regard to past clients until they find the easy jobs for the low pay. Aids have told me clients they work for that require only a few loads of laundry, making dinner, and watching soap operas with them. They tend to choose the soap opera jobs instead of working with Liam in his stander. It's the same pay.
3) The pool of people to choose from is of poor quality. I hesitate to say anything negative about the people who have decided home health care is their career of choice, but after 3 years, I know it's the truth. The agency's agree with me. Generally, the people getting their CNA 1 don't care about the home health of the people they are treating. They are looking for easy money. Now, I said generally, because we have had a few good aids in here, ones who we were sad to see go, ones who used being a home health aid as a stepping stone to greater things. Those women were literally irreplaceable because they are so few and far between.
4) NC does not yet allow you to hire your own aid. It was presented, we almost had the option, and then it was tabled. Numerous other states have this option in place. It is beneficial for so many reason:
- It cuts out the middle man. If we don't want to go through an agency, we can hire someone ourselves and that means the aid gets higher pay because no one has to pay a middle man. It''s a win-win for the state and the aid because it is more cost effective.
- It allows the parents to screen and choose who we want to hire instead of relying on what the agency thinks would work.
- If you do not have the skills to budget and hire an aid, the agencies are still there to work with you and hire someone for you. However, the families that can plan and budget would have the option of going on their own to find the best aid for their children. Families that hire their own aids have higher retention rates versus having to go through an agency.
- The pool to choose from for an in home aid becomes vastly larger. Instead of being limited to CNA's, you can choose your grandma, your friend, a nanny, or a baby sitter. Since I am training the CNA's on how to work with Liam anyway there is no reason I couldn't hire someone with out a CNA. Anyone can learn to take care of Liam, you don't need a CNA to do it.
- Every aid that comes in my home gets to know our routines and where things are. It's a safety issue. My family is exposed to a continual stream of random people that I can't do anything about because if we stop aid services for more than 90 days Liam loses his medicaid benefits entirely. So, we get people in here for a few days to a few weeks who quickly learn where everything is and it scares me to know that so many people in our area are so familiar with my family and our home. It isn't safe.
Liam's aid at school wanted to work with him over the summer but because she doesn't have a recent CNA she can't. Here's the stupidity of that situation: she has been hired by a government agency (Liam's school) to work one to one with my son, she spends time alone with him at the school, she feeds him through his g-tube daily, and is literally his hands and his voice for him there, yet she can't be my in home aid because she lacks a CNA. It's insane.
I am so frustrated.
I have spoken with the regional medicaid manager and she was heading off to talk to her manager when we last spoke. She hears the concerns and understands the problems. It's just getting someone at the state level to care enough to do something about it. We need to change the law in order to help out these families and their children. We can't be the only ones.