Wednesday, April 18, 2012

Do I kowtow or take care of myself?

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!


Carrie said...

I don't have any suggestions and this really stinks. :( Just wanted to say you are doing an awesome job advocating for Pumpkin!

Carrie said...

-Did they also change the rule about needing an adult there during the therapies - did the bus monitor used to count during the sessions too??
-What would they seriously do if you just informed them you were leaving and just left during the therapy....
-There are no schools that could offer the correct services on site?
-You mention that part of the problem is her type of Medicaid. I think foster kids are all on straight Medicaid, so maybe that's the issue, but if switching to an HMO or another HMO would fix this problem is there any possibility of that?
-Any chance your foster agency would pay a "babysitter" type person (case aide, respite, whatever they need to call it) to accompany her?

Sometimes the system is insane. And yes... how many functional families really have an adult with 6+ hours to do nothing every week??

Anonymous said...

I agree, I think the best bet for Pumpkin to not have a lapse in services is to have a case aide go with her. Can you specifically ask for this?

In the meantime... What about all the other foster kids this policy must be affecting? You can't tell me that you're the only foster parent who is unable to spend multiple hours per day in a waiting room while their special needs kiddo is receiving services. They're going to have to come up with a long-term solution.

G said...

So, the therapists' offices are telling you that you can't leave during therapy?

That stinks. I drive my kids (one foster, one bio, so different insurances) to their appointments, but in both cases, I drop off, go run an errand and come back when they're done. I've never looked into whether I'm "supposed to" do that or not...I just do it. You're absolutely right that it serves no purpose for you to sit in the waiting room--this isn't a "medical appointment" where an adult needs to be present the whole time. Unless this rule is a CYA against abuse by the provider?

I think Carrie has a good idea--could your agency find someone to stay? My agency recruits volunteers to transport and this sounds like exactly the sort of scenario that's for.

Mie said...

I was headed in the same place as the others - getting a case aid to transport. The county has them though they'll tell you they're rare.

OR, can you get her a CASA that would be willing to do it or another volunteer through the local child advocacy center who could do it? Or, your agency too?

CherubMamma said...

I'm going to answer the questions from above...

- The rule of having an adult present during therapies isn't a new one. But they used to just say that the staff on-site was the "authorized adult". With the changes in the transportation laws requiring a parent to ride with the children and remain in the therapy location, they are now enforcing the parent staying across the board.

- If I just left they would probably deny services to my child. It is a Medicaid law. It just happens to be a stupid one. But the rehab facility doesn't want to get cited for not following procedure either. Honestly, their hands really are tied.

- The school does offer Pumpkin services. However, they are very minimal (only 1x per week for each therapy). And the therapies are limited to things that apply in a learning environment only. They do not encompass all that Pumpkin needs. Nor are they frequent enough.

- All foster kids in Texas fall under Superior Health...and then under that, Star. However, these new Medicaid transportation rules (and the resulting enforcement of a parent staying at therapy) apply to all patients regardless of what kind of Medicaid they have.

- I've got things in the court of my agency. However, they are understaffed (as are most social service agencies). I highly doubt they will be able to find anyone that can do this "babysitting" for me.

- This is affecting every single child in the area where we live...not just foster children. I've spoken in great detail with the director of the rehab facility Pumpkin goes to. Parents that work full time are being told they will have to leave work to attend therapies that used to be handled while the child was at day care. Many parents are instead deciding that their children will just no longer receive therapies.

- Pumpkin doesn't have a CASA officially. I'm not sure if they even have any volunteers in the CASA office. I know there are a few people actually on staff that are supervisors. That person is the only one that contacts me concerning Pumpkin. And honestly, they stopped contacting me months ago and I only see them at court (if then).

- It was reported on the news last night that these changes are supposed to reduce fraud. It's a very, very broken system. But I've got to dig my heels in. I did not sign on to spend 6 hours a week sitting in the waiting room of a rehab facility doing nothing. Someone that actually has more power than me is going to have to do something or I will put in my notice with Pumpkin. I have to draw the line somewhere.

- It's sad. Very, very sad.

Sharla said...

Unfortunately, I have no answers for you. I am privileged to live in Canada where there is no dealing with Medicaid. Services here are just provided and back during our days as foster parents, if there was a foster child that required more appointments than just regular check-ups, a youth worker would be appointed to them to take them to all appointments and stay with them if the foster parent couldn't.

I hope you get this sorted out as it seems unreasonable. Hopefully, someone else will have a workable suggestion for you!

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