Wasteful Wednesday- FINAL DEMAND

I was planning on writing today about the 3 appointments scheduled back to back on Monday (the doctor's office scheduled testing and then to see the doctor right afterwards) that lasted almost 4 hours instead of the planned 90 minutes. However, when I got home today from two more back to back appointments for Talli I saw a letter in the mail from the hospital. A couple of weeks ago I wrote about the ongoing saga of the hospital billing department.

Today, the letter stated it was a "FINAL DEMAND" (caps and bold are theirs) on a bill for 3/11/2011. "We have been unsuccessful in our attempts to reach you and discuss your balance." Hmmm, the letter is dated 9/6/2011 and the only time I have gone without a working cell phone (my home phone rings to my cell phone) is the past 2 hours when I somehow lost the back of the phone and the battery and September 7th when I my cell phone fell out of my pocket and into the toilet, however, my voicemail is working just fine.

It goes on to say how they are sending me to collection if the balance of $3,806.25 is not paid within 10 days. Wow! Isn't that two days from now!

So much for the head of billing who is actually a hospital employee rather than a contractor fixing everything for me.

I will be calling the patient advocate office again.

I sometimes wonder when I get to parent vs. running around in circles.

Wasteful Wednesday- Food (a day late)

Sorry, I am a day late on this one.

One of the big parts of PA is the lack of interest in food and for us food jags.

Talli will go for weeks with only eating a few bites of food a day. She does always have a lunch packed for school and there is at least one dish she can have at dinner with the family. A couple of times a month, she will also choose what we are eating as a family. However, she will have food jags that are more like binges and want to eat a particular food.

It could be a whole box of Betty Crocker Fruit Snacks in one day (.8g protein and 800 kcals). That is easy to accommodate, since I can just run to the store and if she loses interest I can give them to the boys as a treat. When it is specialty low-protein foods; it can get expensive and a lot of food can be tossed if I overestimate the length of the food jag.

She has had food jags with Ener-g pretzels (~ $2.00 for a 2.65oz bag or about 8 times the cost of Rold Gold pretzels) and I overbought, several bags went bad. Also, with Energy Options candy bars where she was eating more than a bar per day ($2.94 for a 50g bar, the size of a Hershey bar) I ordered enough for 2 weeks and reorganized the pantry and misplaced them, although, it didn’t matter because she stopped eating them. I don’t think the Energy Options bars will be tossed in the future as my boys think they are great treats when they snatch some (blehhhhh!!).

It would be nice to have a local network of families to buy or swap with. OR IF food was covered we could go "shopping" at clinic and take what we need instead of trying to plan ahead and wait for it to ship. I guess insurance would need to recognize that medical foods are just as needed as formulas-- oh, wait! some don't even see the need for formula.

Wasteful Wednesday- AAAAAAHHHH! My credit report

Talli goes to the hospital every 4 weeks for IVIG. IVIG is extremely expensive, around $3,500 for one dose for a 71lb child. That price is not for the room, other medications she takes, nor labs. She has been getting it since 2005 and the number of hospitalizations for illness has significantly dropped.

Over a year ago, the hospital she goes to outsourced their billing. Now, at least once a month we get a statement saying we owe between $4,000 and $24,000. We call them and they usually say that they do not have her Medicaid information. This is pretty annoying because I verify when she registers each month that they have the information and they do.

Well, last month, we got another statement. This one indicated that we need to pay approximately $24,000. Rawlo called them with the Medicaid information on July 26^th. While we were on vacation July 30-August 14 I kept getting calls from an 800 number, but it would hang up prior leaving a message. While we were sitting in the car August 4th, I called the number, and it was the hospital billing department. Remember, this is the outsourced company. I spent about 15 minutes on the phone with Allysa. She said we needed to pay the entire amount or be sent to collections. She said that the immunologist’s office had an internal form called “IVIG” that needed to be filled out each month in order for the hospital to bill the insurance company. She said she would put the account on hold for 14 days and then it would be sent to collections.

I mentioned this to Rawlo and he freaked out a little bit about our credit rating and the problem going to collections causes. He didn’t realize that “being sent to collections” threat is told to me about every other month from billing departments (If you have Medicaid and they are a Medicaid provider they cannot bill you nor send you to collections.) So I called again and got Warren. Warren indicated that Talli had 9 different billing accounts and that the Medicaid information was not listed on all of them, he said he would take care of it.

The day after we got home, I stopped into the doctor’s office and verified that they did not need a form filled out. Ya, there is no form.

After we were home, we got 2 letters from the hospital indicating that we needed to pay $4,000+ and $12,000+. There was no person listed on the letter, date of service, nor services received on the letter. It was dated August 18^th. I also received a letter from Blue Cross to send them information on our other health insurance policy, so that they can coordinate benefits. This is usually sent out when a provider sends in billing information and indicates that the patient has another insurance plan. This is needed when a person has two insurance plans, typically when both parents have policies that cover their children, so the insurance companies can decide who pays for what. Care coordination is not needed when the second insurance is Medicaid. Medicaid is a payer of last resort, meaning they pay out benefits after insurance and any other funds are applied to the bill. As a result of this, insurance companies do not consider Medicaid another insurance policy.

I called and spoke to Warren again. He indicated that Talli’s account was under review, so no letters should have been sent out to us. He also said that the $4,000+ bill was for me, but the balance was only $356.26. I told him that I had sent in a payment for $356.26. He checked and they had received my check, but applied it to Talli’s account. I told him to correct that part and he said he would. He said that the rest of the balance was waiting on me filling out the Care Coordination form. I got the dates of service for the $12,000+ bill and he gave me a list. I looked through our EOBs and our insurance had paid on all but 1 of the dates of service. I spent 45 minutes on the phone with Warren.

Then I called Blue Cross and straightened things out about the care coordination. The rep also said that they would not be paying for IVIG until Talli went off of it for 12 months and it was reviewed again. That is not going to happen. She indicated she would send a letter to the hospital listing the payments they had sent and copies of the checks that the hospital had electronically deposited. I spent 35 minutes on the phone with her.

I was pretty miffed after all of these calls because it was a pain. I was planning on running and missed my run because I was on the phone.

So….. I called the hospital patient advocate and gave her a 5 minute rendition of what was going on. She said that she was hearing this a lot since the billing was outsourced and would talk to the head of the department. The next morning, I got a call from the Billing Department head, she said that the insurance was waiting on medical information from Talli’s doctor before they would pay out on the IVIG. I told her that it was the first I was hearing about that and that I had spoken with Blue Cross the day before and they indicated they were not going to pay until Talli took a break from IVIG. She said she would take care of the calls and bills.

It has been a week now and no one has called or sent me any nasty grams in the mail. I spent at least 2 hours on the phone trying to straighten this all out and more time shifting through EOBs. Like most other metabolic mamas we have inches of paper that makes up the EOB stack for this calendar year and finding anything is a pain. I did discover that the hospital billed Blue Cross twice for the same hospital stay in April and Blue Cross paid them twice, differing amounts each time. So of course the irony that is my life, the hospital sends me a bill when they have already been paid twice.

When I have a spare minute I will let Blue Cross know.

Wasteful Wednesday- pump bags or basins

This is my first post for Wasteful Wednesday, posts to highlight how with a child with a metabolic disorder so much of my time, money, and patience are "wasted" on the silliest of things. Also, the insurance company and the government spend a lot of their money (which then translates to the rest of us) on the mistakes and bad policies.

We get our supplies from a very large national supply company. We are pretty stuck with them because we can't get an Infinity pump and Propimex from other suppliers. We regularly get the wrong order. Last month, I placed our usual order, Polycose usually ships in its own case as does the feeding pump bags, and the rest of the supplies are put into larger shipping boxes. After Steve, our UPS guy, left, I realized that one box was not the regular size and shape of what we regularly receive and my pump bags were missing. When I checked the label, I saw that it was a case of 50 of those pink hospital basins, you know the ones you use for sponge baths and puke buckets. The supply company didn't want them back because it wasn't cost effective to return them.

So, if anyone needs 50 pink basins they are at Goodwill.

It does baffle me how a case of Zevex Infinity pump bags could be confused with a case of basins.

IEPs

Today we had an IEP meeting for Talli. In the end, we got pretty much what we wanted. There is new administrative staff at the school this year and the special ed and health staff from the district has changed. For things that we previously had push back on, some staff were asking for. One thing in particular, is that in the Health Plan within the IEP there will be a listing of the knowledge/skills that a staff member and her nurse need to have prior to being responsible for.

Typically, Talli's IEP is in May right at the end of the school year. We had this one today because we filed a complaint with the State Board of Education, this is different from Due Process in that the State can rule and have things changed without a hearing. It is also quick, they rule within 60 days of the complaint. In May 2010, the school did not give us 10 days notice for the IEP meeting. They also removed the Health Plan from the IEP and months later said it was a 504 plan. They also removed nursing as a support service in her IEP, so no nursing minutes were listed, only consult minutes from the school nurse. The State Board ruled that they had violated our rights (really Talli's) and that since she has an IEP because of the result of her medical conditions, the health plan and the nursing minutes need to be included as part of the IEP. So they had 6 weeks to get to the state 1. a meeting notice that was appropriate and 2. an IEP with the Health Plan included and the nursing minutes stated. Since neither of those things occurred in May 2011 when we met, they needed to hold a new meeting.

Tomorrow, I am going to start a line of posts called "Wasteful Wednesday". It will list the occurrences that happen that waste resources- it could be our time, money, or other people's money. Most are so frustrating, they are comical.

Our version of Home schooling

Although, Talli does go to ESY I supplement a hodge-podge of different bits and pieces that I have pulled from several places. All combined, we spend no more than an hour on "homework", excluding reading.


Handwriting
Spelling
Math
Geography
Reading
Science


Handwriting- A former OT of Talli's introduced us to Handwriting with Tears. Talli's writing is horrible, although, it has much improved. Occassionally, she reverses her letters, the letters are large, and she has difficulty with spacing. This summer we will work in the Printing Power book, each day she writes in 1-2 pages. On some days, she will write on the lined paper spelling words or items she has composed.


Spelling- We have added spelling goals to her IEP. Each year, there is a list of words that the kids are expected to know, many of the words are repeated to keep them fresh. There are about 100 "no excuse" words for the 3rd and 100 for the 4th grade. Her goal is to have a certain proficiency for both lists.


I make flash cards to help her practice the words. She has a very good long term memory, so once we can get the words in there, she tends to keep them. Since laminating can get expensive and I hate working with the home laminator I purchased a few years ago I do a quick and cheap version- trim them up and tape them to index cards with clear packing tape.

Since the tape doesn't cover the entire card, I have writing space on the back to make notes. I run through the words to make sure she can first read them. There were only 2 words in the 3rd grade list she couldn't read the first time through. Then we work on spelling, if she can spell it out loud (picture a spelling bee), then it is passed off with a note on the back and we don't bother with it for a couple of weeks. We work on about 6 words at a time.


Each day she tries to spell the word I read aloud. Once a week, I have her write them. We also use spellingcity.com to practice the words with the games. Her favorites are Hang Mouse and the word scramble.


Each year's worth of cards fit very nicely in a box for Energy Options candy bars.


Math- Talli is working on basic addition and subtraction, telling time, and counting money. At school, she uses Touch Math. She no longer needs the dots on the numbers or coins, but counts as if they were there.


Each day, I have her do 2 worksheets from the books listed below. Once a week, she gets her allowance of $3.50, which she has to count out and put 1/10 towards tithing and 1/10 towards savings. Then there is a discussion about how much she is going to save for a special event or toy and she has me put away a certain amount for that. Currently, she is saving to pay for her ticket to Disney Live! Three Classic Fairy Tales, which will be here in Illinois in March 2012.


The materials we use are:
Horizons K Math Package (I purchased from Son Light with the flashcards and manipulatives)

Time, Money, & Factions 1-2 (An I Know It Book)





Science- For science we are using
Magic School Bus books and videos
The Human Body, Super Science Activities
Facinating FActs, The Human Body

We talk about the systems of the body and she will do a worksheet out of one of the latter two books.

Geography- We started covering the Great Lakes Region, then the Prarie states, and then the West and Southwest (Florida was discussed almost daily because... That is where Disney World is!).
We used the following materials-
The 50 States Book and Magnetic Puzzle Map
Leap Tag Pen and Map
A cardboard puzzle of the states
A two week trip driving to California

Extended School Year

Today was the last day of the regular school year. On Monday, Talli starts Extended School Year (ESY) services. ESY services are for those who risk loosing skills over the summer break or who have an emerging skill that could be lost over the summer break. Those with Propionic Acidemia qualify for ESY as a metabolic crisis or stroke can cause them to loose skills.

In our district ESY is held M-Th in the mornings for 6 weeks. It is held at one elementary school in the district, so she will be bussed there each day. The classrooms are either multi-needs or instructional. Talli is in an instructional classroom. It tends to build her self-confidence as some in her class are a little behind her and some a little bit ahead.

The benefits for Talli are significant- rather than loose about 1 month of skills that the typical student looses over the summer, she tends to gain skills. I do work with her extensively over the summer as well, in my next post I will go over some of the things that we do during the summer and extended breaks from school.