I'll try to be clear and not ramble. But I'm just a tad frustrated with another player in The System. This time it's Medicaid. I'm going to give some of the back story in case you're not completely familiar with Pumpkin's case and all it entails.
When I got the call about Pumpkin I was told she had some developmental delay and a limp. They mentioned something about a past seizure disorder but told me she had been seizure free for nearly 8 months. I was not told she is severely mentally retarded. I was not told she could barely walk. I was not told she wasn't potty trained. And I wasn't told that once you have a seizure disorder you have it for life. (And there was NO way Pumpkin had been seizure free by any stretch of the imagination!)
When they carried Pumpkin into my house it was quickly apparent that the situation was different than how it had been painted. I knew in the bottom of my heart I was looking at an infant in a five year old's body. But...I didn't stop things. I signed all the paperwork and set myself in place to be an advocate for this little girl who had been severely medically neglected.
After navigating the Medicaid waters and figuring out which "kind" of Medicaid she had, and then locating providers, I was able to get Pumpkin in private therapies – speech, physical and occupational. I organized these so they took place during the school day. Medicaid provided transportation services that picked Pumpkin up at school, took her to the appointments (which could last as long as three hours total in one day) and then drove her back to school. The system worked. Pumpkin got her therapies as needed. She made progress.
Medicaid is changing things though. No longer can anyone use the transportation services unless a parent, guardian or other authorized adult rides with Pumpkin in the van.
Initially this wasn't a problem. The transportation service in our area had both a driver and a monitor in the van with the children at all times. This monitor served as an "authorized adult" so I didn't have to be there.
Starting Monday, April 23, the rehabilitation facility is contracting with a new transportation service. I was told this new contractor is taking over ALL transportation in our area. The kicker -- they don't have monitors in the vans when they pick up the children.
I have to be there. On the van. Giving up hours of my day to sit in a waiting room while Pumpkin attends therapies. (Which would be stupid. It's not like I NEED the transport services. I'm just explaining how I was told to do things by Medicaid so y'all can get the full picture.)
So, using my head for more than a hat rack...I say, "I'll drive Pumpkin to the therapies."
I don't really want to. It's still going to be an incredible hassle and will be a huge time suck. But, if I could drop her off and then come back I wouldn't lose my whole day.
This...isn't an option either. According to Medicaid statue 32.024(s) a parent, guardian or other authorized adult is required to be at all medical appointments or when a child is receiving services. Under no circumstances will the rehab facility allow me to sign a consent form letting the professionals in that rehab facility service as an authorized adult. No...they are saying that their hands are tied and yes, I have to sit in the waiting room while Pumpkin receives all her therapies.
Imagine if you are the parent of a special-needs child and you work at a full-time job outside the home. Just imagine! Now you have to get permission to take time off to sit in a waiting room while your kid gets therapy. Is it possible?! Probably not. Most people don't have that many hours they can throw away every week.
I know I don't.
Just because I work from home doesn't mean I have six-plus hours to spend doing nothing each week. It also doesn't seem like good parenting to expect my three year old to sit in the waiting room with me. And then, this summer, my 7yo and 8yo as well.
I get it -- Medicaid is trying to make sure parents are involved in their children's medical issues. I wouldn't dream of using transport services to take my child to the dentist, doctor or other appointment without me present. But this is different! These are regularly scheduled and very time consuming therapies. It's just not the same.
I keep being told, "It doesn't have to be you ma'am. It can be another family member or authorized adult."
I keep cutting them off and saying, "There is no OTHER adult that could do it." Then I make sure to add, "Do YOU have six hours that YOU could spend each week sitting in a waiting room?" Every person I talk to gets all sheepish and then says this is the way it is. Their hands are tied.
I kicked the problem back to my licensing agency and CPS. I said that starting Monday Pumpkin will no longer be attending her private therapies unless they can come up with a solution.
Bluebell avoided the problem completely and said she doesn't know what to do. My licensing agency has no idea what to do either.
I hate being this way. Pumpkin NEEDS her therapies desperately!!! But if I simply give in...well, I can't simply give in.
So marvelous people of the internet -- do YOU have any brilliant ideas?
I've ruled out home-based therapies. There are none in my part of the country that take the kind of Medicaid Pumpkin is on. There is one other facility located close enough to my house to drive to. However, that Medicaid statute 32.024(s) would technically still apply to them. I'm waiting for someone high-up on the food chain at that location to call me back and see for sure if they would require that I wait on-site during all therapies.
Help please!!! I welcome all ideas!