Sunday, March 18, 2012

Why Pumpkin doesn't have a wheelchair

Meg asked me if I thought it was time that Pumpkin got a wheelchair. I decided to answer this question in a separate post. There's a LOT involved in getting anything for Pumpkin. Getting special medical needs met - especially when dealing with Medicaid - takes a lot of time and effort!

When Pumpkin came into care (Jan. 2, 2011) she had nothing for her medical and physical needs. No medication for her epilepsy. (Mom had taken her off it.) No therapies on schedule. No schooling yet (despite the fact she was old enough to be in kindergarten). And no braces for her feet.

Slowly but surely I got started catching Pumpkin up with these things.

First, I got the name of her neurologist and she got back on her medication. It has been over a year now and we are still making modifications almost every 8 weeks when she goes in to see the doctor. She's had an extended EEG and also a short one that was conducted during a hospital stay. Her brain activity is not normal and she will most likely have seizures the rest of her life.

Pumpkin started school a few weeks after coming in to care. It took a bit of doing, but they were able to put her in the self-contained special needs room right away. She didn't immediately qualify for therapies through the school though. That took a 504 meeting and then the ARD so Pumpkin could be giving her IEP. Even now, the therapies aren't very frequent at school. I certainly don't rely on them for much!! Also, the school does a HORRIBLE job of communicating with me about the things Pumpkin does do there. Unfortunately, I've come to look at the school and it's role in Pumpkin's life as...well...glorified day care.

After many, many doctor appointments, evaluations and insurance snafus Pumpkin got enrolled in private therapies. This was an insurance nightmare. No one had explained to me that not only would the rehab facility have to accept Medicaid where we live (and they ALL do so that wasn't the issue), but they would have to accept the "special" Medicaid that Pumpkin is on now that she is a ward of the State. Originally her pediatrician sent us to a great rehab facility right across the street from the doctor's office. We went through the several hour evaluation process with physical, occupational and speech therapies. Then, after much waiting, I was told that this particular facility didn't take Pumpkin's version of Medicaid. So...I had to get a new referral and start the process all over at a different rehab facility.

That done, Pumpkin started all of her therapies. I squawked a bit and made sure that these therapies were being done during the school day. I didn't want Pumpkin sitting in school all day and then having to work her therapies in after that. Besides, I know that these therapies are truly where Pumpkin is learning the most practical things. Personally, I couldn't care less if Pumpkin knows the letters of the alphabet! I want Pumpkin to be able to get herself dressed. Or at least walk over to where the diapers are kept and bring me one when prompted. Pumpkin struggles with the most basic of tasks!! Learning the letters of the alphabet is a worthless skill if she can't tell me her throat hurts or a brace on her leg is bothering her.

Now -- on to the wheelchair question...

Originally I wanted Pumpkin to get a pediatric stroller. Pumpkin is capable of walking around the house with minimal assistance. She hangs on to the furniture or the walls for the most part. But she is capable of walking from the car to the house without any assistance. She just has to go very slow. Medically it's said that she can't walk "community distances". For example, she wouldn't have the strength to walk around the zoo. She would fatigue too quickly! A wheelchair seemed like overkill though. They are bulky. They are expensive. And Pumpkin doesn't need all the bells and whistles on a wheelchair. She just needs an umbrella stroller that's big enough for her size.

I went out trying to find a stroller. Again I ran into the issue with the medical supplier not being an authorized provider for Pumpkin's version of Medicaid. And then, I'm not exactly sure what went wrong. I was given the runaround and eventually, I just gave up.

First I was told that Medicaid would never approve a stroller right out of the gate. They would need to see a progression of improvement first. Even if a wheelchair isn't medically necessary, Medicaid would more easily approve a wheelchair than they would a stroller.

I went to her pediatrician to get the forms filled out. The doctor was too general and didn't write the script specific enough for a stroller. The supplier couldn't use what the doctor wrote.

Then I was told to get things switched over for a wheelchair. The doctor said that she wouldn't write a script for a wheelchair. Because the plan was for Pumpkin to be reunited with her mother, the doctor didn't like the idea of a wheelchair being made available for the mother to just "plunk" Pumpkin in all day long.

By now I had been to multiple medical suppliers. Multiple doctor's appointments. And several meetings with the physical therapist. I didn't have the energy to fight it anymore. I found a nice jogging stroller on Craigslist and went with that. It's approved for up to 50 pounds and I figured it would just have to do.

Meanwhile, Pumpkin now has braces on her feet. They help a lot with her balance. I also have been able to get her a walker. We don't use the walker in the house as it isn't necessary. But it is quite helpful when we are out in public and at school. Even the walker hasn't been trouble-free though. It should have come with swivel wheels and the supplier wrote the order wrong. I've got her physical therapist fighting it out with Medicaid to get new wheels on. Despite the fact we've had the walker since last fall, that problem still isn't fixed.

And now we're nearing the end of Pumpkin in our home. If all goes "well" - Pumpkin will be moved to her aunt and uncle's house 12 hours away. Court is April 3rd and I'm hoping we can make the transfer even before Easter. I'm certainly not holding my breath. But the homestudy has been approved. Everyone seems to be in favor. And the aunt and uncle are coming to my home tomorrow for a visit that I'm going to supervise. I believe that the visit tomorrow will be the final determination. If I give a favorable review to CPS, there will be no reason for Pumpkin to remain in Care.

If the visit is a total flop and Pumpkin's relatives back out, I'm giving my 30 day notice. It is not a decision I've come to lightly but I've reached the end of my ability to continue to care for Pumpkin.

Unfortunately, a wheelchair or stroller has fallen to the bottom of my list. I'm still fighting for Pumpkin to get back in all her therapies. Every six months they have to be approved again and her rehab facility didn't send things in correctly a month ago. Pumpkin is currently not in OT because of the issue. I'm fighting that.

I also need Pumpkin to get new braces. She's outgrown the ones on her feet right now.

And there's the walker issue with the swivel wheels.

I've certainly come to a new appreciation for all moms and dads of special needs kids! It is battle after battle after battle to get them what they need. And even then, you have to wait and wait and wait. It takes the idea of being an advocate to an all new level.

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