January 1, 2015

They say you can’t fight City Hall, but if you know in your heart that someone you love has been wronged, and can’t speak up for themselves, then you fight tooth and nail. Until the end. In my case it wasn’t City Hall, but the State of Nevada.
And I had all but given up, until I received a phone call the other day and felt like I had just been given a Christmas present for Jenni. A vindication, if you will.

You learn many things over the years when you have a child who has special needs, and unfortunately, you had better build a backbone if you have a flimsy spine. I have had my fair share of going head to head with school districts, physicians, the Social Security Administration and now the State of Nevada. Times this by two when you have more than one child with a total and permanent disability and I wonder at times why my hair isn’t completely white yet. (Oh wait, it is… I just have Sally Beauty supply close by).

When someone is born with a disability- a permanent and total disability (and I am only going by my own daughters’ life experiences) they are eligible for SSI (Supplemental Security Income) when they reach the age of 18. For all the naysayers out there- and believe me, I have met a few who rant about people feeling they are entitled to benefits and live off the public- I say: Walk in my daughters’ shoes and then complain! Once the SSI recipient is approved, they automatically receive Medicaid (health insurance). No need to apply, it goes hand in hand. At least that’s how I was told initially many years ago. In our case, Jenni (and her sister) have Medicaid as a secondary insurance and it is a godsend. Medications, doctor visits, hospitalizations and other costs add up- and it can take out a chunk of a family’s budget. Those who truly need this medical assistance are deserving of it.

We never had any issues what-so-ever with Medicaid over all the years while Jenni & Kimmi have had it. All good things must come to an end, right? So to my surprise in late September when Kimmi’s doctor’s office called and told me that the upcoming procedure she was scheduled to have done is on hold- – until I find out what Medicaid is doing. I asked the woman on the line, “What are you talking about?” and she replied that when she called for insurance verification, it shows Kimmi had Medicare Part B as her primary insurance. I told her that was a BIG NO and she said that is what Medicaid is showing and that I had to call and fix it. That is no easy task for one thing. No phone numbers are loosely given out where there is a speaking human on the other end, just a run around. I finally called Social Security and they said to call Medicare. I called a Medicare line they provided me and they showed that Kimmi did NOT have Medicare Part B (I knew that, as I would have been the one applying for those benefits). I was told to call Medicaid (some number where I finally got through, which took 2 weeks time) but they showed nothing about her having Part B, and then they in turn directed me to call the local welfare office? Welfare? I was surprised to hear about this department because we don’t receive welfare. I quickly learned that THEY are the ones who basically run the Medicaid part of your life. After calling the number given to me, for over a week, without talking to an actual person, I was ready to throw myself into traffic. Kimmi’s procedure was put on hold and I assumed it would be taken care of soon. HA! I went on to the State’s website and searched high and low for a link to call someone. Nothing jumped out at me. So began my emails to them. They have a ‘contact us’ button on their site, so I did. I sent several emails over the following days asking for assistance. I explained briefly what had gone down and that I needed to find out WHY this whole Medicare Part B thing came up, being that they were the ones who instigated it.

After a week, I got an email that someone would call me later that day, or ‘before the end of the business day tomorrow’. I was so fit to be tied by this time, having weeks gone by with NO help from them at all. I wrote back and said to have someone call me NOW. Several hours later, at the end of October on a Thursday, I got a phone call from a woman who I now know has no right working in that capacity, whatever that may be. She told me that in order for Kimberly to keep her Medicaid, she HAD to apply for Medicare part B, or else be terminated. I asked her MORE THAN ONCE, and I tried to be calm and professional, “Do you have ANY idea what you’re saying? This makes no sense to me. Can you check with someone else, because this sounds completely inaccurate?” She put me on hold for a few seconds, then said “I spoke to my supervisor and she said that yes, this is how we are doing it now.” Doing it now? Doing what? She then gave me a spiel about how the state is having financial troubles (Ok, not my problem) and that they are willing to pay the Medicare Part B premiums for Medicaid clients because it’s cheaper in the long run.” Did she really just tell me this? She may as well have said, “We need to rein in our dollars so we’re riding the backs of the disabled and poor to balance our budget. Kapish?” After hearing this, I knew deep down in my heart that this woman was out to lunch. This gal who I’ll refer to as “Kari” said I had ONE WEEK to go to social security, apply for Medicare Part B, get proof (as in a copy of the application) and bring it to the welfare office and sign the log book, drop the papers in the drop box and that will do it. While I had her on the line I asked about Jenni, and wanted to make sure either this was or wasn’t affecting her Medicaid as well. Turns out, according to Kari, that Jenni had to have Medicare Part B also. Again I questioned her to no avail regarding the accuracy of this development and she kept saying that THIS IS HOW WE’RE DOING IT NOW. When I mentioned that I never received anything in letter form from them about this mess, and that it was MY doctor’s office who called in late September about it, she had nothing to say. No explanation. I still knew I was right, in her being wrong. What kept running through my brain was that THIS should not be happening. Call it mother’s intuition or common sense—something was wrong here. Before I hung up, Kari said she would be sending out two sets of papers: one for Kimmi, one for Jenni , and that I had to have everything turned back in to them in less than a week. The paperwork arrived on a Saturday and Monday morning Dennis and I went to the social security office. The worker at SSA reluctantly filled out the applications and said she had ‘never heard of ANYONE having to have Medicare Part B in order to keep their Medicaid benefits.’ I told her ‘Lady, I feel the same way and I know something isn’t right with this whole thing, but it’s as if they are holding a gun to mine and Jenni’s head….we don’t get part B, we lose her Medicaid.’ She gave me copies of the Medicare part B applications, and I had brought an envelope with me so I could place the copies of both girls’ applications in the same envelope and then go inside the welfare office and sign the log book, drop it off and be done with this mess. I logged in the book both girls’ names, and I even put the reason: ‘Medicare part B apps. I figured I would make it as easy as possible, with the envelope and all.

Ten days later Kimmi gets her Medicare Part B card. Not Jenni. I waited a few days and still nothing for Jenni. I called the toll free SSA number and was told they saw nothing in their system on Jenni. She advised me to go to our local SSA office, which I promptly did the following morning. I get to the window and the worker tells me that ‘”Yes, Jenni’s application was filed and scanned, and that I’ll re scan it into the system. You should get her Part B card in 10 days.’ Days later and I get a letter from the welfare office. Jenni’s Medicaid will be terminated on November 30 because “you did not respond on time to the paperwork that should have been turned in.’ By now, I was flying off the handle with outrage. Because there are NO phone numbers, NO names of case workers, No nothing for a person to get help with, I sent off an email around 3:00 pm (as soon as I got the mail and the termination notice) asking “What in the heck are you talking about now?” I asked if they hadn’t received the Part B application- because I was at a loss as to what else was possibly out of compliance with. I immediately checked off the box requesting a hearing and a conference, stuck it in the envelope for it to go out in the mail the following morning. I checked my email to see if they responded to my previous note about the fax I sent, and luckily (and this was the only time throughout this hell of a nightmare that spanned two months) I got a response from a unit supervisor who said “we have no record of anything on Jenni coming in to our office”. I sent a note back stating that I could fax them the application for Part B that was date stamped on October 27 and also noted that I questioned HOW Kimmi’s papers were received and yet Jenni’s weren’t, yet they were in the same envelope? I got a response saying that I could fax them the copy, which I did. Because this was a Friday late afternoon, I ran up to the mail store and shot them off the copy.
When I returned home, a little after 4:00pm, I emailed them to ask for a status check, did they receive the fax? They sent me a note saying they ‘didn’t know’ and to check back on Monday. I emailed them Monday morning and got a response from someone (another unit supervisor) who said “it takes two days to enter anything into our system, check back on Wednesday.’ On Wednesday morning I emailed them, several times throughout the day, and finally was told “something came in, we aren’t sure what.” It had to be the copy of the application because that is all I sent. Then they tell me that Thanksgiving is ‘tomorrow’ and we’ll be closed Thursday and Friday and that someone will call you by the end of the business day on December 2. I told them that Jenni’s Medicaid was due to be terminated on November 30 and I was VERY concerned that no one was helping me at all in this mess to straighten it out. I wanted answers before the 30th. I could have been talking to a fence post because these people don’t give a damn!

December 2 came and went, never hearing from a soul. I sent the welfare office a total of 19 emails, begging for someone, anyone, to please call me. I told them I felt there was a major error in discontinuing Jenni’s Medicaid and no one there gave a rat’s ass to bother to explain to me what was going on. During this time (around December 2) social security sent me a letter, DENYING Jenni’s claim for Medicare Part B. Once again, Dennis and I drove to the SSA office and the worker I saw this time said the same thing as the other two workers: “I have never heard of anyone being terminated from Medicaid for not having Part B. It makes no sense. Are you sure the person who told you this worked there?” Then he proceeded to tell me I could file an appeal (that was the reason I went there to begin with) but he clearly stated that It will be denied. When I asked how is it that Kimmi’s was approved and on the same day I applied for Jenni’s, he had no explanation.
Around the second week of December I got a letter from the welfare office saying that Jenni HAD Medicaid previously and it ended on Novemeber 30. I was to take this letter ‘if I wanted to purchase her insurance elsewhere.’ WTH? By now, I KNEW they screwed up big time. I had a distinct feeling that the new Obamacare insurance laws were somehow confusing in with Jenni’s case, but NO ONE would contact me to check into it.

I fired off a letter to the head of the Health and Human services department in Carson City, another letter to the welfare office and also one to one of our State Senator’s. (Not to mention, made a copy of the request for hearing letter I had asked for back in November, wrote in 2 inch lettering in yellow highlights “2nd Request!!” and sent that off again to the local welfare office -as well as to Carson City). In the initial letter I received on November 21, telling me her benefits would be cut, if I chose to have a hearing/conference, I should have heard back from them within 10 days. That is what their notice said on it. Never heard anything. I attached some of the copies of the emails I got from the welfare office, copies of my request for hearings, and anything else that pertained to my plight. In my letters to these agencies, I basically asked how they could take away a person’s Medicaid when the person has the mental capacity of a 4 year old, is not employed, and lives off SSI? I sent out a third letter (copy) of my original request for a hearing, with once again, BIG lettering reading 3rd REQUEST, knowing it was futile. Weeks went by and I had to admit, after hearing from NO ONE, that this is how it’s going to end. I fought the fight, have been so stressed out over this and it has just compounded all my other health issues. I have felt sickened for the mere fact that Jenni was screwed over. The fight in me was now nearly gone. I had given up and resigned myself to the fact that no one cares about the less than fortunate individuals in our society.

So you can imagine my surprise this past Monday, when I received a phone call from someone at the welfare office. She called to tell me ‘I reinstated Jenni’s Medicaid back to December 1, 2014.’ When I asked her WHY it was cut to begin with and WHY was she being made to take Medicare Part B, the woman, told me “I don’t know what to say. This should NEVER have happened. She does not have to have Medicare Part B in order to keep her Medicaid and I apologize for the information given to you back in October.” I told her that I knew I was right from the get go and I hadn’t wanted to come off as a smart ass when I questioned Kari in October over it, and all she could say was “I’m so sorry this happened.” She even told me that she saw all the emails I had sent and was very concerned with the ‘responses’ I got back from the welfare ‘unit supervisors’……or lack of concern on their part. She told me I would be hearing from someone from the ‘Hearing Board’ and that I could cancel it because it had been ‘straightened out’. I got a letter from the Adjudication Board yesterday and I had to read and re-read the letter because it sounded like it came from a law office. Basically what it say’s is that under Nevada State Law blah-blah-blah, the state has to respond promptly to requests for hearings and claims made- and they were found to be in error of that. And that they (the board) checked into Jenni’s case and found the welfare department at fault. There was no reason for termination of Medicaid benefits to have been initiated. So she was reinstated. And I KNOW this was all brought on by my letter to the Head of the Health and Human Services department, because one of the last emails I got from a unit supervisor in early December told me “your daughter’s case is closed’. Closed? I was STILL waiting for them to tell me whether they received her Medicare part B application – and they were SUPPOSED to be checking into her case to get back to me. So the local welfare office shut the book on Jenni, and they are the ‘holders of the Medicaid’ that people depend on who need it. I know one of my letters got to the right person, hit the nail on the head and action was taken.

So for now, all is well with the world. As worn out as I have become throughout this entire debacle, I would do it all again…… But hope I don’t have to. I feel vindication. And you can fight city hall.


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