Karma

Me (said at work today): “I’m just going to give everybody the best customer service, and be super, overly helpful today so karma  will give  it back to me with all these medical/insurance people.”

Maria (coworker): “Sorry, karma is a sociopath.” :)

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! We haven’t been getting PT (physical therapy) because it gradually got too expensive and we kept cutting it back until we were going once or twice a month. And we found out that was screwing over our daughter. Her gains have diminished, and she’s three years old and is very behind in her gross motor skills. Plus now that she’s post op (just had surgery), PT is even more important!

I contacted CCS (California Children’s Services) whose brochure lists arthrogryposis as a condition that qualifies us for physical therapy. I spoke to a friend of ours in San Jose whose son is getting his PT through them for the same condition. (He also just had the same surgery.) His family did private insurance too until it got ridiculous. I filled out the paperwork and faxed it to CCS. My contact there, Melanie, said I needed a doctor’s note that shows Laelia has  arthrogryposis, and it needs to be from a doctor who has seen Lali in the last six months.

I contacted Laelia’s pediatrician for the needed information, but since they were busy and didn’t return my call right away I started in on her local San Diego surgeon who we saw the month before we flew Laelia to Philadelphia. (We like to keep him informed of what we’re doing. Good thing we saw him!)

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! All I need from this office is a piece of paper that says “arthrogryposis” somewhere on it faxed  to CCS.

I got transfered three times when trying to get a single doctor’s note. Finally I got a person who sounded like they could help me. I explained I was applying for CCS and I just needed proof of my daughter’s arthrogryposis in the form of a doctor’s note. This person told me that I did not qualify for CCS and asked if I was trying to get into MTU. I asked her what those letters stood for and she said, “MTU–(slowed speech) Me-di-cal Ther-a-py Un-it.” Oh okay well is that what the CCS  program is called where you get physical therapy for arthrogryposis? I still don’t know. I don’t know if we were ever on the same page. This woman told me I had to get a prescription for that and come in to see the doctor and other confusing, misguided, unasked for information.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! All I need from this office is a piece of paper that says “arthrogryposis” on it faxed to CCS. (I’m repeating myself a LOT these days.)

She responded (dropping her voice to patronizing) that CCS was for the poor, uninsured kids (and spoke to me like I was taking great advantage of all the needy babies of the world), NOT for kids who obviously have private insurance! This is where I broke down and asked her if it was reasonable to pay $500 a month for therapy when we have a qualifying condition for CCS?! Did having arthrogryposis just mean you needed to be rich? Or if you’re middle class does having arthrogryposis automatically force you to go into debt or your child doesn’t get to walk one day?

She said she couldn’t help me, CCS wouldn’t take me and then she forwarded me to Susy (the doctor’s assistant) with instructions on what to ask for. Well Susy–wonderful, wonderful Susy–asked me what I needed, heard I needed a doctor’s note with the word “arthrogryposis” on it and said, “Okay.” Finally! But of course it’s not that easy. She first had to fax me release paperwork to sign before she could get me the doctor’s note. But she did it so quickly that it wasn’t a burden. And I was even able to use my fax machine at work.

Because of what I was just told by the other lady, I called up Melanie at CCS crying, “Is it true? You won’t take us? Please help us get my daughter PT! Please, we need it!” I got her voice mail so I went ahead and faxed in the application and the doctor’s notes. She called back and said it would take until around Tuesday to look over what I faxed in so we can talk in depth about it then. It takes time. So now we wait.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I know I can’t use CCS and private insurance at the same time, and in order to get CCS I have to lose the therapists we do have (who I can’t see because of red tape, keep reading) who have actual experience with AMC and who are responsible for some of my daughter’s biggest accomplishments. So I am trying to see our local PT and OT so they can make a bunch of hand splints and give me enough advice to last me through the new guys. But Children’s Hospital’s Developmental Services require a doctor’s prescription and insurance approval. (In a good system you would have a card that said, “I have arthrogryposis,” and whoever saw it would drop everything and give you physical therapy on the street corner if necessary!)

So I spoke to my insurance (that switched from Aetna to Health Net), and got transferred a lot before a nice woman named Glendy said Health Net couldn’t help me and I had to contact CPMG’s medical management department for a new case manager and to check on the pending authorization that’s still up in the air.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I called CPMG whose office was closed until 12:30 pm today, and then also closed for the weekend and Monday for the holiday. It turns out that it takes five business days to review and respond to a request for PT, but they never received my request!!! Ugggggggggggh! I explained to Andrea in customer service about my daughter and her immediate needs. I asked for a case manager. I had written a letter stating what arthrogryposis was and that PT was the #1 required treatment for it. I included pictures of Laelia and wanted to know where to send it. Andrea (customer service with CPMG) made the process sound long and hard and completely confusing. So I made her break down the steps for me. Who do I contact? What process is there to get a case manager? How do I get this NOW? Well finally I mentioned that our old case manager was named Gretchen and it turns out she’s still with CPMG, and even though our insurance changed, she would still be the one to contact. So I left her a message that she won’t get until Tuesday. I made sure to sound desperate.

Because we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I then called Children’s Hospital’s Developmental Services. Alicia is the one who makes the requests of the insurance so I wanted to talk with her. I had already requested PT from them earlier in the week, but just found out Lali’s insurance doesn’t have it. Well Vanay (I’m guessing the spelling of her name here), who was taking over for Alicia since she’d been out since Wednesday and wouldn’t be back until at least Tuesday, couldn’t help us because the request wasn’t finished (no one told me there was a problem!), and they needed “something”–some notes or something, they couldn’t tell me–that wasn’t provided and wasn’t getting worked on! That’s why CPMG didn’t have the request. IT WAS NEVER SENT!!!!!!!!

But we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

One thing Vanay mentioned is that maybe we needed an evaluation. Well we don’t, but it turns out we don’t need insurance approval for an “evaluation,” and maybe Sylvia would (wink wink) just do PT with us, so I agreed wholeheartedly that we needed an evaluation. Sure, whatever, just let us see our PT, and however soon we can get that is great!

It will take at least two to three weeks. Of course.

Which is frustrating because we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I asked Vanay to contact our physical therapist, Sylvia, and request we be seen sooner, to see if the evaluation be shorter so she can fit us in next week (which I was informed was against the rules) or that something, ANYTHING be worked out at ANY time SOON and we would be there. But they only had an email contact for Sylvia and they probably couldn’t contact her until Tuesday. (If they even tried.)

I’m crying now because we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

Dr. van Bosse had mentioned that we could travel up to LA for PT if nothing else could be worked out. Since it looks like if I want my daughter to receive care in the next two to three WEEKS then I truly have no other option (or if CCS can only see us once a week then I’d be forced to  supplement it with traveling to LA anyway) so I called Shriners’ main number, explained our whole situation and waited the 24 hours it took for them to call me back. I spoke to Applications since I was told to, but they transferred me to Medical Records who got all our information so they could request medical records from the Out Patient Department in Shriners Philadelphia. The process will take–Can anyone guess?–two to three weeks! WHY?!!!!

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! NOW! RIGHT AWAY! LAST WEEK!

I then called and left a message with Shriners’ Out Patient department in Philadelphia letting them know that they would be getting a request for my daughter’s medical records and to please get it to the LA Shriners people ASAP to cut down on the two to three weeks of processing time it will take to get PT. I’ll call them again on Tuesday. I’ll call lots of people again on Tuesday.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

My aunt Linda R. wrote to my congresswoman, Susan Davis,  our governor,  Jerry Brown, and our    representative, Juan Vargas on our behalf. I did get an email from Susan Davis’ office asking what exactly they could do for us? “Make someone give us PT NOW,” didn’t sound like an intelligent request.

Really this is exactly what we went through when Lali was born, and delaying her PT and OT actually hurt her and has negatively affected her for life. Arthrogryposis literally means joint contractures, and they are the worst off when kids are little. The more you can work them when they’re little, the more you can avoid surgeries and more needs when they’re older. I’m serious that there should be something in place that when you have been diagnosed with a condition that REQUIRES a certain treatment, and without immediate treatment the child will not function properly in later years, then you should receive that treatment in a TIMELY manner no matter what the circumstances.

So that’s what I want. I want kids to get their treatments immediately because it’s important. I want a PT to come volunteer to do PT with my daughter or accept money out of my pocket instead of out of a government program or my insurance, both of which take WEEKS. We really are needing this now. I was told if I wanted my daughter to ever walk I needed to get PT twice a week and do a ton of therapy at home. Without direction from a professional PT, what can I do at home? I’m not a medical student!!!

So I was super helpful to everyone who called my place of  business today looking for basic customer service because that’s my job. I’m a service to the customers, not there to make their lives harder and my job easier. And I’ll be an excellent customer service rep for as long as I get to keep my job and until my daughter’s needs swallow that part of my life as well. I was just hoping that someone would take me on as a good deed for the day and save me a lot of grief. I already have to torture my daughter everyday, causing her lots of pain. Plus I’m suffering with stress and dizzy spells and other health concerns. Just once could someone help us? Find a way around the rules? Do the right thing?

Sheesh. Thanks for nothing, karma. You ARE a sociopath.

PS: If a mom of a kid with special needs says, “Yeah I’ve been fighting with insurance and doctors lately.” Just know that that woman is going through something you hope to never go through. Give her a hug and a spa day and then take the phone and offer to wait on hold with whatever heartless entity she’s battling so she can pee.

One Response to “Karma”

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