Tuesday, August 3, 2010

Help Wanted!

There are some days that we wish that we could get just a little bit of decent help! Today has been one of those days for me!

This morning I found myself making the 1,953,743rd phone call to one of our fine (NOT) state agencies. Is it REALLY too much too much to ask these workers to see my disabled child as a person instead of just a piece of paper or a number to push (or NOT) through the system?

I would love to figure out a way to truly be able to make it a "collaboration" between state agencies, insurance companies, providers and ME (my child's advocate)! I have NO IDEA how to make that happen!

Cole was born in February of 2007. Around November, when he was 9 months old, we were told he had cerebral palsy. After many hours of research and questions and 'just through the grapevine' I was informed there were some options for financial (touchy subject) assistance to help us to help Cole.

TEFRA, a Medicaid supplement plan that helps with deductible and coinsurance and some denied services from our insurance plan, is one of those options. After jumping through all specified hoops and time spent waiting in the state offices, I then submitted the application signed by Cole's doctor, the SSI letter I received, a copy of ss cards, insurance card & birth certificate. This was in April 2008.

We were assigned to Mr.R through DHS (department of human services). After many months of unreturned phone calls and the occasional request for additional information from Mr. R, I had no idea what I needed to do next. In August 2008 I received a letter for more information (medical records, doctor bills, hospital stays etc). I get all of this paperwork together AGAIN and send it.

I never quite knew what to do or expect as far as a 'time frame' (Mr. R was sure to say to me with every conversation, in a slow Eeyore like monotone, "I just had a case that took over a year." and would reassure me that our effective date would be retroactive 90 days previous to when I applied) so I patiently waited through the holidays with no contact. After the first of the year I once again started checking with Mr. R but he never had an answer for me.

Some time in May 2009 (I think), during a meeting with my Sooner Start Rescource Coordinator, Ms. M, I had explained this situation and she was kind enough to try to help me.

Once again I had to get additional paperwork together (some being duplicate of what I had sent in August, some being updated medical records and bills). I made multiple copies, sending them to Ms. M. She kept a copy, mailed a copy and hand delivered a copy. I also have a copy. Ms. M also spoke with Mr. R's Supervisor. Then a short time later Mr. R passed away.

During the time that Mr. R had Cole's case, Mr. R had at one time told me Cole had been approved and even gave me his ID number. After contacting providers so that they could bill, one of the providers was very kindly concerned because they thought Cole had passed away. I contacted Mr. R only to find out that that number had belonged to another little boy that had passed and that it was given to him (to give to Cole) in error. Imagine how that would make you feel as a parent!

Since that time, Cole's file has been passed off to at least 3 other workers (may be 4) in that office and I have had to send more paperwork AGAIN, which included another application, copies of my driver's license, Cole's birth certificate, social security card & insurance card...and more medical records which I have to request (and pay for some) from providers. All of which they should have had. This was sent on February 23, 2010 to B, another DHS case worker.

I last called B on March 30 and after much coercion she contacted the TEFRA office. She advised me that 2 ladies are working on Cole's file but she did not have an answer for me as far as if he has been approved or not. She stated one lady has completed her part in the decision making but the other was out of office ill. I asked her for their names and numbers so I could follow up another day. She advised me that she could not give me that information. This seems very odd, but  I asked her to please try again the next day. As of April 1st, I had not heard back from her.

Our providers have been so patient but also are concerned about how they will bill back that far as they state they can only bill back 1 year. I was told that due to special circumstances (the DHS workers taking so long, not me) that the providers could still bill TEFRA.

About a month ago we FINALLY received an in-home visit from a nurse and was advised we should hear something and/or receive Cole's ID card within 2 weeks.

THEN....the 1,953,743rd phone call this morning....

Only to find out they decided to make his TEFRA effective as of February 1 .....  2010!!!

Meaning all deductibles (for 3 years), all 10% of every hospital, therapy, doctor, and medical equipment bill, and all charges that my personal insurance did not feel was a medical necessity for my baby, for the past 2 years ...we will be out of pocket for.

We hate to have to ask or accept any help to take care of any of our children as we feel it is our responsibility, but having a child with special needs has forced us to ask AND accept whatever help we can receive, especially when one piece of equipment (wheelchair) costs as much as a car (over $10,000).

To top it all off, I had asked B how long she has had this approval and ID information. The first words she said were an excuse that she had been ill. I asked when I could expect the actual ID card and THEN she advised me it would be sent after it was certified…which she “thought” she had done yesterday. Again I felt like to her my baby was just an unimportant number that could be certified whenever she felt like getting to it, instead of thinking of how important it could be to help us.


  1. Um, wow.

    I don't even know what to say except that I am sorry you had to go through this.

    My daughter is 8 years old and I have yet to figure out how to make things work smoothly. I have never had something as awful as this, but I have had a few battles.

    Don't feel bad about asking for help for Cole. For some reason, all things that are for special needs kids cost thousands of dollars. We can't go out and buy our kids a bike, unless we have an extra $1000 just laying around.

    Now, about DHS. I have had problems getting calls back from my worker and even her supervisor. I was told to make sure I leave a message with time and date that I called, and that I expect a call back within three days. There is some law that states they have to call back within a certain amount of time, at least in Michigan.

    I'm not sure if that helped, but just know that you are not alone!

  2. You know I'm in the same boat as you. We resubmitted for this year in April, and have heard nothing since.

    I hate this for you. They are supposed to make it retroactive to the month in which you submitted. Let me go google.
    Love you.

  3. The Henrys, Thank you for caring! That means a lot!

    I have learned that I have no choice but to ask for help for Cole...I am the only one that will fight for him as he can't do it for himself. You are right, what may cost $100 for our typical children will cost us 10 times that for our special needs children as everything has to be modified/special made. Even the things insurance does cover, our percent after insurance is more than what we would typically pay. And we are limited on our choices of where to purchase from...so costs CAN stay higher.

    As far as DHS, I am NOT one to give up easily (after all, I have continued to make call after call for 2 1/2 years)! I know my baby deserves all the help he can get! I may not be able to get them to make the effective date retroactive back to when they had said they would but I sure will keep trying! I do not know of any such law in Oklahoma but I do know that if you keep pestering them with phone calls, eventually they respond just to get you to stop bugging them! ;)

    Thank you for your kind words!

    Heather,yes dear, I know you are! And it just really sucks sometimes doesn't it? My only advise is to do what I said above...keep on them until you get an answer!

    I hate this for you too!! Hopefully you will hear something soon! Love you too my dear sweet friend!

  4. Thanks for posting this, Leanna. Your hard work is demonstrable evidence of the difference between an invested parent and government worker.

    I have one (bad?) word for you - attorney.

    I also have 3 recent posts on dealing with the Medicaid system, starting here:

    Wishing you better luck with the 'system' and thanking you for sharing information with other parents (and me). Barbara

  5. Thank you for this post. You have every right to be upset and you are not alone in this battle. We have been denied every single program that the government has to offer and have to cover all the expenses ourselves that isn't covered by private insurance. Proving up "medically necessary" equipment has been the hardest thing so far. It is also extremely hard to find case workers that understand what it's like to be a parent of a special needs child. Basic courtesy doesn't apply and I hope that not all families of special needs children have to go through this. The system is certainly broken and we also hate asking others for help but when your own government can't help you, it's pretty sad.

  6. That is one sympathy story. Hope you got the needed help.

  7. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Karman S-Ergo 115

    Keep Posting:)

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