It needs to change.

If anyone is an example as to why the state of NC needs to be able to hire their own in home aids, we'd be first on the list.

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.

The situation we continually find ourselves in with the nursing is asinine.  We are constantly turning over aids and it's insane to think that the situation is going to get any better. Three years of the same thing means we will get three more years of the same thing if nothing changes at the state level.

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.

A month of changes

God has been so good to us during this season of changes. Liam being in school was always a bad idea when we first considered it and having a team on board that thought he could do it along with the positive changes we saw take place in Liam over the last year brought us to the decision that we should try it.

I am truly ecstatic to see Liam loving it. Liam only goes 3 1/2 hours a day and last week when I picked him up, wheeled him out to the truck, and opened his door, he started crying. He had full on tears with the rumpled up face. Liam pretty much never cries so I asked him if he was upset about leaving school and if he wanted to go back inside. He immediately stopped crying and looked at me. I told him he could have five more minutes and I wheeled him back inside where we surprised everyone by showing back up.

The staff was so happy to hear the story and it makes this momma's heart glad to know that he loves being there as much as he does and they love having him there. To know that your child is loved on by others is such a gift and when dealing with the needs Liam has, it's a special soul that looks past it all and loves on him anyway. Honestly, we have been truly blessed to have a lot of caring people in Liam's life, from church, to friends, to school, Liam's challenges have been overlooked by many an adult and they have loved on him in spite of them.

Math lesson

Circle time around the board for math

Liam's awesome one to one mentor Ronnie. He LOVES her.

I had Liam's annual IEP yesterday and it went really well. I think the goals they have are well thought out and the amount of interaction between therapists looks promising. One of the biggest changes for us is that because of Liam's success in the room and his desire to be there we are increasing his time to 4 hours 15 min a day.  Liam will start his day at 8:45 and end at 1:00.  I am really happy about the increase because when I would pick Liam up at 12:30 he would be in the middle of the math lesson and I always feel bad about having him leave before it's over. I would be taking him out of the circle and interrupting his lesson. It's probably part of the reason he got so upset at me the other day.

 

Liam's stamped tree

Liam was really proud of this cat mask.  He chose brown ears and the orange for the face and whenever I talk to him about it he just grins his silly grin. His teacher wasn't sure he really wanted brown because everyone else was choosing black but he told her twice that that was what he wanted and I think he's super proud of himself for making his own choices and seeing the results of it. 

Liam is having a great time. He's learning a lot. He's engaged with his teachers, therapists, and peers and he loves being there.  I'm so grateful for the support we are receiving and for the mentor God provided. It's truly been a wonderful season of change.

Moving on

After two years of aids/CNA's, we just lost number 6. Not that I am sad to see her go. She was a 'nice' woman but she wasn't a good fit for Liam.

We started with R back in May. She had a small fear of dogs and even though we have three, she never let it bother her. One day we put Bandit, our largest at 50 lbs and loudest barker, in our laundry room because she was still fairly new and he would bark at her pretty loudly for the first few minutes of her arrival. She went to the door to the laundry room and taunted him through the glass. She made faces, would pretend to open the door, and all the while he was cornered in the room barking and growling for fear of his life. What do you think that did to our already skittish dog? He never grew fond of her after that.

R never really talked to Liam either. I knew she was quiet and would encourage her to talk to Liam about what he was watching or engage him in any type of communication. She just never did. I always felt bad for Liam, like he was alone in the room even though there was a body there.

This week, when R got here she said she needed to talk to me about Bandit. Apparently the day before when I had left before she did, Ian helped her finish up with Liam in his stander and Bandit barked at her. She accused Ian of not shutting him up until she was out the door. She said her nerves were shot and we needed to do something about him.

I understand her fear of the dog. But she has been working for us for 5 months and has never said a word. I reminded her that Bandit has never forgotten being cornered and taunted by her that day and that he doesn't bite. He just barks his discontent with her presence in his home. =)

That day she left Liam lying on my living room floor and walked out the door with out telling me she was going.

Ian happened to be walking through the house and saw her as she was going out the door.

The next day the manager called and said she quit. She said she just couldn't handle the dog, after 5 months working here and not one word until this week about it.

But, I'm not sad. It's a good thing. She wasn't a good fit but we stuck with her because we have an aid for such a small amount of time in the week. It wasn't the right person but I just dealt with it.

Please say a prayer that we get someone good in here for Liam. I see so many great people who interact so well with him but it seems like all we ever get is duds for in the home.

A victory for our children in NC

History was made for thousands of children across North Carolina on Friday when House Bill 344 (Tax Credits for Children with Disabilities) officially became law!

Gov. Perdue released a final list of bills under her consideration this afternoon, which included a statement saying that she will let the measure become law without her signature. This means the bill will become law at midnight.

This is the first piece of K-12 legislation in NC that gives parents statewide school choice where private education is an option. The measure allows parents of special needs children to claim a tax credit of up to $6,000 for educational expenses that include private school tuition, therapy and tutoring. With this bill, parents can better afford placing their disabled child in an educational environment that best meets their needs!

Thank you Gov. Perdue for not vetoing the measure, which became law behind strong legislative and public support!

 This video featuring parents and children who would benefit from the measure. along with calls of support to Perdue helped make it happen.

 “Allowing all of our children to receive a good, sound education in North Carolina means having them learn in the educational environment that best meets their needs. This will now be possible for thousands more of our children.”

Nearly 200,000 K-12 students in North Carolina public schools are estimated to be receiving special education and other related services each school year. This costs the state $8,160 and school districts $1,931 per student. It is estimated that up to five percent of qualified students will take advantage of the tax credit, which would annually save taxpayers up to $10 million and school districts up to $4 million per year within the next five years. This savings will be placed in a fund for special needs programs in public schools.

 Programs similar to House Bill 344 exist in Arizona, Florida, Georgia, Louisiana, Ohio, Oklahoma and Utah.

“Now we can add North Carolina to the list of states that are going above and beyond by embracing the ideals of real parental school choice for families,” Allison said. “This piece of legislation lays the foundation for similar options in the future for our students.”

Now, if we could just get self directed care for our in home aid services, we could cut the budget even more. I became aware this past week that for about 5 years now they have allowed self directed care for adults with disabilities while the children still remain in the antiquated system of buearocratic red tape.

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?

Knuckle under

I can't remember if I posted a while back that we lost our home aid this last year. And I'm too lazy to go look and check right now. I may have just posted it on my facebook.

Anyway, we lost the aid we had this summer past. And I really liked her. She worked well with Liam and when I was working with Liam she would get busy cleaning my house. It was a win-win. But, the agency she worked for didn't treat her all that well. She had to drive an hour to my house and her time wasn't compensated. Also, she was a real nurse. And Liam doesn't need nursing. He just needs a playmate. She wanted somewhere that she could actually use her degree in her chosen profession. So, she quit.

The agency attempted to get another aid in here for us but, I don't like having new people come into my home, in our safe place, and take care of my son. That's my job. And while I appreciated the break that our previous aid was able to give me, I didn't enjoy the thought of bringing in someone new and trying to build a relationship all over again. It's just not fun for me. I was also starting to have problems with the agency myself (like lying) and I didn't want to work with them anymore.

I talked to my case manager about not having an aid and what it would do for Liam's medicaid and she said it would be ok not to get another one. I was surprised since I had to sign papers saying I would allow one just to get Liam medicaid in the first place and now she was saying he didn't have to. Awesome!

I did miss having D around to help. She was really good. But I just didn't want to go through the whole process again. So, if I didn't have to, I wasn't going to.

Then November rolled around.

When Liam turned 3 in November he had to be reevaluated for the program we are in that qualifies him for medicaid..  The requirement came up by the head honcho in Raleigh that Liam needed an aid again.

This time, instead of the 12 hours a week we were getting, we could drop down to only 6 and still keep Liam qualified. I liked that plan. A lot.

For three days a week I have a new aid come in for only two hours at a time. We just met her this Monday so she's only been here twice. And she's very quiet. But so far so good. She doesn't seem like an axe murderer yet.

With the two hour time slot, I use up her entire first hour staying by Liam's side in his stander. Since he needs help with his head, she can stay by his side while he plays and watches his movies. And I get to get a few things done. I actually got a bathroom clean this morning!

While I've had to give in to having a stranger in my home, the short time seems like it's going to work well. It's just enough to get a few things done but not so much that I feel someone has come in and taken over my job as the mom.

No new helper...yet.

We still don't have an aid. I'm not complaining though.

My case worker came for a visit last week and when she heard about the first lady who came, well, she was ticked. She had told the agency that had sent Ms E. what I needed and couldn't believe they sent someone who didn't fit the bill at all. I told her they were trying to find someone else for me and she said that wasn't going to happen. She called them immediately after leaving my house and told them we didn't need their services.

I think I really like her.

We have another rep from a new agency coming to meet me and Liam tomorrow. He sounds like he knows what he is doing. By coming to meet us and get a feel for what I want and what Liam needs, he has a better chance of placing the right person sooner rather than later.

And I told him I was going to be picky. =)

Maybe next time?

As they say here in the south, 'Bless her heart', but our aid today was just not fit for the job.

She was a very nice lady.

But she couldn't even get up and down off of the floor very well at all.

In fact, she only got on the floor one time with Liam during the entire 5 hours she was here.

Granted, she was new and this was a different experience for her since her expertise is with more mature patients. So, I thought maybe I should give her some time.

But, I just didn't feel it was right. I didn't see her being the right fit here. And I have to advocate for Liam because he can't do it for himself. And although I hate to complain, I didn't want to waste time and wait for it to get better.

So...

I hope the next one is a better match.

No experience necessary

I had my appointment with the coordinator who will oversee the aid who comes into the house to help out with Liam. I explained to her that I won't need an aid that many hours of the week but the main coordinator wants to keep it as it stands. This week I'm too busy anyway so she will only be able to come for two days. I was told I could have her come in the afternoon if I wanted, but why would I have her here during nap time? She even asked me if I wanted her to help out with laundry or cleaning. Um, I thought she was a CNA, not a maid?

She will be showing up at 8 am on Monday morning. She is a level 1 nursing assistant. So, that means that she can't even participate in anything that involves Liam's g-tube. But, that's ok. I don't need her doing that for me anyway.

But the best part? Her experience is all from geriatrics.