There’s Still More! (Seriously, there is!)

We are about to venture into the ridiculous….

If you read my last post you will know that I because of an account I had, I was required to pay back Social Security $12,000.00 in benefits – which I knew was dead wrong.

It took them all of 4 days after receiving the account information and the spend down documentation to send me a letter informing me that I had to pay back a year and a half of DC’s Social Security benefits in the amount of $12,000.00.

After sending two appeal forms and hearing nothing I finally got to talk with someone (On December 17) who informed me that the issue was disposed of! They were very quick to let me know I owed them a large sum of money but very lax in notifying me that the case was disposed of. Understanding the incompetence of this agency, I asked for a letter verifying that fact. I was assured that a letter was going out that day.

In the meantime, I was notified that my step-father, without my knowledge and against my expressed wishes, made DC the beneficiary on a small life insurance policy in the amount of $1500.00. He is not allowed to have more than $2,000.00 in resources at any one time. $1,500.00 is less than $2,000.00, you say? He should be all right, you say? No! That is not how it works. To determine his resources, they take the highest amount of money in his account for the month and add the extra resource to that (If he did not have an account, then they just take the amount of his monthly check and add from that). The highest balance will always be the amount of his Social Security check, so it will always come up over $2,000.00, not by much but it will be over (a friend of mine’s son had his benefits suspended for a .20 <twenty cent> overage).

And Hey! – Fun Fact!

If you would like to be called stupid, hysterical and be screamed at by everyone that you know and are related to, just have something like this happen. It is just fun, fun, fun.

Just to answer all of the “questions” asked “very loudly” of me (because everyone else without adult children with special needs knows better, you know).

No! I cannot just not accept it because the insurance company is required to report it under his name as abandoned. This means that his benefits will be suspended until I spend it down (without actually having the money because I did not accept it) and will still be on the hook to pay back whatever amount they determine I should pay.

No! I cannot take it and deposit it in an account out of state, because the act of taking it makes it a resource. It does not matter where it goes.

No! I cannot deposit into his Special Needs Trust, an Able Account or a Burial Fund, unless his trust etc., was the designated beneficiary to begin with. Yes, depositing it into one of those places MAY qualify as spending it down, but it would still be considered a resource because it was paid out to him BEFORE going into one of the accounts mentioned above.

My step-father’s executor gave the insurance company my contact information. The insurance company, because DC is an adult, needed his guardianship papers so that they could legally talk to me.

Yes! I do have to send them his guardianship papers! We, as parents of special needs children HAVE to go to probate and become the legal guardians of our children when they turn 18 because in the eyes of the state and federal government – special needs aside – they are adults, and should legally be able to make decisions for themselves. If I were not his guardian, I would not be able to talk to his doctors, meet with his day program, chose a day program, make appointments… you get the picture. Bottom line is that HE IS AN ADULT AND BECAUSE THE POLICY WAS IN HIS NAME, THEY ARE NOT ALLOWED, LEGALLY TO TALK TO ME ABOUT ANY OF THIS WITHOUT HIS GUARDIANSHIP PAPERS!

Yes! They could make me pay back $12,000.00 over $1500.00 – they tried to have me pay back $12,000.00 over $2,600.00.

Even though I knew all of this (because I DO know things), I contacted an attorney who verified everything I just wrote.

He also said that I could actually use some of his monthly expenses as part of the spend down.

I already knew the drill, but he advised me to report it as soon as possible. As soon as I received the check (on Dec. 24^th) and a copy of the policy I called SS (on the 27^th, the first day they were open after the holiday) and reported it. Since I was able to use his expenses as part of his spend down, I was able to fax that and all of the account information to the number I was provided, so at least his SS would not be suspended until they determined how much I had or did not have to pay back.

Not having heard a thing by January 25^th I called again. This time I was speaking with a man, who I was familiar with, not personally but via people that I know that have had to deal with him, so I was on guard. First, I explained about the appeals and that back on December 17^th I was told that the first situation was waived and has been promised a letter verifying that.

He went from zero to 100 and screamed “IT WAS NOT WAIVED!” – I began to panic (this is why I wanted a letter. I wanted it in writing). I explained again that I was told that it has been waived and that I would receive a letter stating that.

“IT WAS NOT WAIVED, IT WAS DISPOSED OF! IT WAS DETERMINED THAT IT WAS NOT A RESOURCE AND YOU DON’T GET A LETTER FOR THAT!”

At this point, all I could think of was the Soup Nazi “NO SOUP FOR YOU!” but I remained calm, trying not to laugh and explained that this did not make any sense. If I had not called that day I would still be waiting for an appeal date. Why would they not send a letter notifying me that it was waived (there’s that word again).

“IT WAS NOT WAIVED AND YOU DON’T GET A LETTER FOR THAT”.

If someone told me this story, I would definitely think it was a joke or Alternative Facts, but it is not. He was acting as if it was somehow my fault that THEY were wrong and I was now being punished with “no letter for that”.

I repeated again that this did not make any sense and would it not be common practice to notify someone that the issue was “disposed of”?

One more time, he yelled that “YOU DON’T GET A LETTER FOR THAT! YOU WERE GIVEN THE WRONG INFORMATION! Since he seemed incapable of talking to me without yelling at me, I asked for a supervisor. He put me on hold and instead of a supervisor, he came back and said I would be getting a letter for my records.

Next I had to ask him about issue #2. Had anyone received the faxed information regarding that second insurance issue? I just wanted to be sure that someone received it because it was reported and I did not want them to suspend his benefits because they had not received the information with the spend down. Surprisingly enough, there was no more screaming.

He did not see anything in the records, but he said he would transfer me to the person that would have received it. Of course, I got voice mail and to my dismay it was the same caseworker that I had to deal with during the earlier issue.

Did I get a call back? No I did not.

After a week, I called back and left another message. This time she did call me back and – Oh, how nice and sweet she was! I am sure she was hoping that I would not bring up the first incident.

She told me that she did receive the information but she had not had a chance to go through it. I would be notified if she had any questions or if there would be any benefits to pay back.

Being that it is now the beginning of March and they only took 4 days to charge me $12,000.00 the first time, I am cautiously optimistic. Because the account was something that I had no knowledge of and I reported it, spent it down and got them all of the information they required within days of receiving it (not to mention the fact that I already had to spend $2600.00 of my own money due to their “error”), I am hoping that the spend down was enough and this would be the end of it.

– Cautiously optimistic.

I have done everything I was required to do and I verified that someone had received everything, so I am done! I will not be calling anyone to check on the status and if, in fact this is the end of it, there is probably not going to be a “Letter for that” either.

Oh, and I did finally receive the promised letter about the first incident.

“This letter is to inform you that your over-payment has been” ….

Wait for it….

“WAIVED.”

Even though I was informed loudly that this had not been waived, but disposed of, they could not even be honest and put that in writing. They opted for “WAIVED” so as not to admit any liability on their part at all.

***

FYI, Fortunately, the television I bought for him during the first spend-down, fell off his dresser (I bet that’s a sentence you’d never thought you would hear or read) so it had to be replaced. That and his monthly expenses made spending it down much faster. The new TV is mounted to the wall – the mount was also included in this spend-down.

****

The DAY after I finished writing this – yes, the very next day, I received a letter from Social Security – I will be required to payback one month (the Month of December) of his benefits to them. I wonder if they can just deduct it from that first $2600.00 that I was made to spend?? Oh, and just a little annoyance (if I opt to pay upfront) – “Please be sure to use the enclosed envelope to mail your payment back to us.”

There is no envelope, there never is ……….

I think there’s a form for that…

Posted by TakingItAStepAtATime

Last week was DC’s 6 month review IP (no “E”, he is out of the school system) meeting. There are required reports that I have to fill out after each and every IP and review meeting (partially because DC has afternoon staff until I come home from work). Every report says just about the same thing, but still, I have to write paragraphs upon paragraphs of the same thing each time. Then, as I’ve written about before, there are the annual reports that seem to all come along all at the same time. Right before this IP meeting, I received a new report in the mail – A review to make sure that DC is still disabled.

The questions do not seem to apply to him at all. They seem to apply to a person who is on SSDI – Disability (someone who was once out in the workforce and now can not work due to an injury or an illness). I do not know how to answer any of these questions because they really do not pertain to him at all.

I was told that even though this does not have anything to do with him and it is for a type of disability benefit that he does not even receive, I still do have to complete the form and return it.

I was also informed that no, I could not just write across the page with a black sharpie “HE HAS AUTISM – IT DOES NOT GO AWAY!”

So off I go, to try to fill out another form that has nothing to do with my child, to prove that he still has autism for a benefit that he does not receive and does not qualify for (while waiting for the internet repair guy….. again).

While I do that, you all can feel free to read a post from 3 years ago (before I developed that aversion to opening my mail) about the very same subject; forms and inefficiency.

Does everything really need to be this difficult?

Please Note: The following is a rant, plain and simple; a rant, a vent, whatever you would like to call it. There is no moral to the story, no happy ending, no “Ah Ha” moment, no conclusions to be drawn (actually there are many conclusions to be drawn, but we won’t say them out loud) – just a plain and simple “I’ve had it” kind of rant.

For those of you who don’t have a child with special needs or have young children and haven’t had to think about the “adult” side of things, here’s how it works. I don’t know if it’s the same in every state, but this is the way it goes here.

When your child reaches the age of 18, depending on the severity of the disability (can he/she make decisions for themselves) the parent is required to apply for guardianship of their own child otherwise they will not have the ability to make decisions for that child. The state views them as adults, period, and this means they should be able to make their own decisions, medically, financially, etc. (Paperwork, Probate hearing)

Due to budget cuts right around the time DC was to about turn 18, anyone not covered under Title 19, lost their case worker through Department of Developmental Services. DDS is where the funding comes from for their work/day programs after they leave the school system at 21.

This is the time in our children’s lives when you really need to have a case worker. This is when you have to begin looking for a program for them when they leave school.

Before you can apply for Title 19, you first have to apply for (SSI; not SSDI) Social Security (tons of paper work).

After you apply for Social Security, you can begin the application process for Title 19. I am fortunate that my case worker, Ruthie, at the time, was there to help with this. She came to my house and my friend who has a son the same age as DC, came over and we all did the paperwork together. If not for her, I would still be sitting in the same place trying to figure it all out.

Now we’re done, right? Wrong!

Every year I have to fill out the forms for Guardianship (when they come, sometimes they don’t) again – just to be sure DC is still disabled. Not a big deal, just annoying. But seriously, he has autism, it doesn’t go away.

There is an annual report for Social Security as well as an audit or two during the year “just because”. And….. now that he is in a work program and makes a tiny bit of money, I have to remember to call in during and only during the first 6 days of the month to report his wages for the previous month to Social Security, so they can reduce his monthly payment appropriately.

Also once a year we receive the annual Title 19 redetermination, which is basically as much paperwork as the original application. I’m not complaining, I can live with all of this, but it is a LOT of paperwork!

Complaining begins here:

Now, I may not look like the most organized person in the world, but I do get all of these things done, on time, always!

DC’s redetermination was due on July 20. On July 16^th I mailed a giant package with the application, the year’s worth of check stubs, his last bank statement and insurance cards – everything they asked for in the instructions. This was the fist time filling out a redetermination since he had begun working.

Done! PHEW!

Wrong again!

On Monday, August 26^th I received a letter from DSS that his benefits had been discontinued because I did not complete and return his redetermination! There was a form included so I could request a hearing. This form had to be completed and returned by August 30^{th –} in four days!

“Calm” was never and will never be a word used to describe me, so the next morning a dragged all of my “books” to work to re-copy all 43 pages of his redetermination, because at this point I can’t think about anything else.

First, I decided to try to call the number (silly, yes I know). There was really no menu item that described this situation and no way to talk to a person, so I moved on to faxing the hearing notice and the copies of the redetermination to the number provided. The fax was cutting out and disconnecting and after I don’t know how many attempts, I gave up trying to fax it all.

Knowing this was going to take more than a fax at this point, I took my lunch break at 9am so I could copy all of these forms, check stubs, insurance cards and bank statements. I decided I would mail one copy to the local office and the other to the address that was on the hearing notice. Two more giant packages in the mail – Done!

I was not confident that either of these packages would ever be seen by anyone, as they never received the original and having only 3 days now to request a hearing, I found different phone # in all of my 3 ring binder records and tried again to call. Fortunately, I was able to put the call on speaker and do some work while I waited otherwise I’d be putting in for vacation time to finish all of this! Unfortunately, all of my co-workers had to listen to “Your wait time is…. more than 20 minutes” over and over again.

An HOUR and 9 MINUTES later (just a tad more than 20 minutes), an actual person picked up. I explained the situation as calmly as I could.

Her reply was: “Oh, we’ve put a new system into place where all the redeterminations go first to our scanning facility and are in-putted into our system for us to work on. Because the system has been up and down and they are very backed up, we probably do have your original redetermination and we have extended everyone’s deadline to November 20^th. His benefits have not been cancelled.

Seriously? It may have been more effective to put THAT in the letter instead of telling me his benefits were cancelled and I only had 4 days to do something about it!

Those that know me can imagine where the conversation went from there, so I will spare all of you the details.

End result, she gave me her fax # and I faxed another 43 pages directly to her. She did explain that she is not the person that would be working on my son’s case, but I wanted them to go to SOMEBODY.

So at this point, there are 3 packages of my son’s information floating around somewhere and one more in the hands of this person who has nothing to do with my son’s case.

She also informed me (after receiving 43 pages) that they really only need the last 4 pay stubs. Hmmmm….. Maybe the redetermination instructions could say that!

So….

They lost his original packet (but maybe not, we may never know)
You can’t talk to a person at the number they provide.
They mailed letters to clients telling them their benefits were cancelled. (The person I spoke with said they received 1500 calls that morning)
They extended the deadline without bothering to tell anyone (This would have been something to send a letter about –it may have gone a long way to reduce the amount of calls they received. And really, nobody at DSS found it odd that 1500 cases were being cancelled at the same time, due to non-completion of their redeterminations? – Somebody had to MAIL all of these letters!)
They sent a hearing notice to return by fax within 4 days with a fax number that clearly doesn’t work.
And I still don’t know if anybody that actually works on his case has his forms at this point.

I feel like there was nothing accomplished here and there was an enormous amount of wasted time on both sides.

I suppose I will be in the dark until I get my notice in November.

Baltimore, Over the Rainbow and Back – Part 1

Posted by TakingItAStepAtATime

I really couldn’t write about this trip without including this part of it. This part, Part 1 is a little bit “cranky” – my apologies, in advance.

In early February we set off for DC’s third cruise, his second on Royal Caribbean. We didn’t have to fly for a change because the ship was leaving from Baltimore.
We drove down on Thursday night for Fridays boarding.
There are not many things DC loves more than staying in a hotel, so he was very happy that we were staying overnight. He was even more excited to be in Baltimore, because, of course….. “Hairspray”. I am sure he was expecting Tracy Turnblad (Nikki Blonsky) to be dancing in the streets (I prefer the Ricky Lake version, but that’s just me)

Our ship was to make stops in Port Canaveral, Nassau – Bahamas, Coco Kay – (private island) also in the Bahamas and Key West, in that order. We booked our tours ahead of time and we made a conscious effort not to mention “Bahamas” because DC just hates it there. The tour we choose in Port Canaveral, was a bus trip to Disney World. We kept this a secret as well, otherwise we would not hear about anything else for weeks before the trip.

Friday morning arrived and we took the shuttle from the hotel to the ship. We made our way through security, filled out our forms and went to check in.

DC is 22, but obviously does not drive. He has a State ID. He does not yet have a passport, but a passport is not necessary to go to the Bahamas. All that is required is a state ID/drivers license and birth certificate. When DC was born, I did not opt for the full size certificate. I was told at the time, that the wallet size was just as official and was much more convenient. I have never had a problem with it.

Just to back up a moment…… I am someone who will “put something in a safe place” and never find it again, so I have always carried DC’s birth certificate, along with my own, in my wallet. It has been in my wallet for 22 years, obviously not the same wallet, but in A wallet for 22 years. The top of the certificate is a little bit frayed, but all of the information and the seal is visible.

After giving the woman at the check-in counter (let’s call her “woman #1) all of our paperwork and identifications (the very same identification used the year before and the year before that) she informed me that she did not know if Key West would accept DC birth certificate! She would have to go and have it checked out.

What??? I explained that this is the same birth certificate we used the previous year.

W#1: “Yes, but Key West is really cracking down and it’s a little tattered on the top”

Me: “Well it’s 22 years old! What will we have to do if Key West decides not to accept it?” – (The last few times it has been out of my wallet, was when we checked in last year and at check in the year before that, so the condition has not changed since they approved it on the last trip)

(At this point Doug is muttering under his breath in kind of that sing-song way “Don’t argue with them!”)

Number 1, that is what I do…

and

Number 2, I was not arguing, I was asking what I thought were valid questions.

W#1: “You will probably have to have someone fax the long copy over”

Me: “There is no one at home that has any copies of his information”

W#1 “Oh no, well I don’t know”

– so, in my mind, what she is telling me is:

If I had a family member back home who had access to a long version of his birth certificate or another copy of the wallet size they could fax it over and they WOULD accept a fax copy with out the raised seal (???) – I’m sorry, I was now very confused by all this.

We were asked to sit down and wait in a roped off area. The few people who were waiting there, were waiting to be seen by a doctor before boarding the ship – (we’ll call this the “problem section”).
DC remembering everything, knew that after the check in desk, we should be boarding the ship.

DC: “Time to go to the ship”

Me: “Yes, we just have to wait a few minutes”

DC: “Going to the ship”

Me: “Yes, we just have to wait a few minutes, Bud”

– Now I’m having flashbacks of San Francisco ….

Eventually another woman who seemed to be in charge of the “problem section” came over to tell us that they were still waiting to hear from Key West (we shall call her “Woman in Charge” or WIC for short). She told us that there was an additional problem with DC’s birth certificate; there was no file number on top, just x’s. I had never noticed that and apparently no one else in 22 years – Royal Caribbean, included, noticed either. I took out my own birth certificate, issued in the same city and state and sure enough, mine had a number, his did not.
Now I was really beginning to panic – because this is also what I do. We had been sitting in this area for almost an hour. We were the only people left in the “problem section”. My only thoughts now were:

What if they decide not to accept his birth certificate?

and:

How would I ever tell him we could not get on this ship?

We had been sitting there for more than an hour, now. Suddenly realizing that it was Friday and city and state offices are open, I found the number to the department/office where our birth certificates were issued. Of course, this is a government office so I could not get passed the main menu and any option I choose, led me back to the original menu (there was no “dial zero for an operator” option). I started dialing random 3 and 4 digit extensions and finally a woman answered. I explained our situation. She explained that not everyone is issued a file number. This woman was nice enough to hold while I went to the desk and explained to the “WIC” that I had a city employee on the phone and she told me that not everyone is issued a file number.

The response: “Well YOU have one!”

(“not everyone” to most people, means that some are and some are not)

Me: “Yes I do, but mine was issued 31 years earlier than his!”

I asked if she would talk to the woman from the city, she wouldn’t. I asked if there was something that this woman could fax over to help the process (I didn’t want to lose the person on the phone before finding out what I needed in the event Key West decided not to accept his certificate).

WIC: “It’s in the hands of Key West now, I can not do anything about it”

– so W#1 told us that we would have to have something faxed over if they did not accept the certificate we had with us, but WIC wouldn’t tell me what to have faxed or the fax number to send it to now that I had someone on the line –

While I was standing there with the city employee still on the line, the WIC looked at her screen and announced that Key West has approved his certificate.
~PHEW ~ (as DC would say)

I thanked the woman holding on the phone and told her that they finally approved it and we were all set.

Still sitting in the “problem section”, she directed another woman (we’ll call her woman #3) to begin checking us in. She took our names and paperwork all over again and told us to have a seat because she needed information form the original check in person (woman #1). We sat down again, woman #3 left. She came back to her seat as another passenger walked into this “problem section”, walked up to woman #3, waved to all of the other people working the regular check in line and got herself checked in.

My assumption at the time was that woman #3 was still waiting for woman #1 to supply her with whatever information she had already entered into the system, so she decided to check in this other passenger (who obviously either works for Royal Caribbean or has some sort of connection to the line). When she finished checking in this passenger, she just sat at the counter. The “problem section” was still empty with the exception of us, so she literally sat there, hands folded with a smile staring off into distance as if she was waiting for her next passenger.
Now we’ve been sitting in the “problem section” for another half hour (One hour and 45 minutes listening to “Going on the ship” – “Time to get on the ship”). I turned to Doug and said “Do you think we are still supposed to be sitting here? I’m going to go ask”

– “Just wait, they will call us when they are ready. Don’t keep bothering them.”

After another 15 minutes, Woman #3 was still just sitting there, hands folded, grinning at no one. I went up to the desk and asked the WIC who was at the computer behind “Grinning W#3” – “Should we still be sitting here or should we get back in line?”

Apparently, woman #3 should have been checking us in, but decided to wait on her friend in the middle of our check in and then just forgot about us! She wasn’t waiting for information as I assumed, she just thought we were already checked in! After WIC yelled “Why didn’t you check them in? I told you to check them in!” – she finally checked us in.

– More than two hours of – “Going on the ship” – “Time to get on the ship” later, we were finally checked in and ready to board.

On the ship, thankfully lunch was still being served (what a catastrophe THAT would have been, if DC missed lunch too!)

A cheeseburger and fries took his mind off of the whole boarding debacle. Everything was right with the world in his eyes.

Cheeseburger, fries AND “Chicken with Bones”

I opted for something a little bit stronger…..

Less Calories 🙂

DC WILL be getting a passport very soon….

And who knew it is more difficult to get into Key West than the Bahamas? Who knew?

(to be continued in Part 2- where our trip does get better..)

Does everything really need to be this difficult?

Posted by TakingItAStepAtATime

Due to budget cuts right around the time DC was to about turn 18, anyone not covered under Title 19, lost their caseworker through Department of Developmental Services. DDS is where the funding comes from for their work/day programs after they leave the school system at 21.

This is the time in our children’s lives when you really need to have a caseworker. This is when you have to begin looking for a program for them when they leave school.

Before you can apply for Title 19, you first have to apply for Social Security (tons of paper work).

Now we’re done, right? Wrong!

Complaining begins here:

Now, I may not look like the most organized person in the world, but I do get all of these things done, on time, always!

Done! PHEW!

Wrong again!

“Calm” was never and will never be a word used to describe me, so the next morning a dragged all of my “books” to work to recopy all 43 pages of his redetermination, because at this point I can’t think about anything else.

An HOUR and 9 MINUTES later (just a tad more than 20 minutes), an actual person picked up. I explained the situation as calmly as I could.

Her reply was: “Oh, we’ve put a new system into place where all the redeterminations go first to our scanning facility and are inputted into our system for us to work on. Because the system has been up and down and they are very backed up, we probably do have your original redetermination and we have extended everyone’s deadline to November 20^th. His benefits have not been cancelled.

Seriously? It may have been more effective to put THAT in the letter instead of telling me his benefits were cancelled and I only had 4 days to do something about it!

Those that know me can imagine where the conversation went from there, so I will spare all of you the details.

So at this point, there are 3 packages of my son’s information floating around somewhere and one more in the hands of this person who has nothing to do with my son’s case.

She also informed me (after receiving 43 pages) that they really only need the last 4 paystubs. Hmmmm….. Maybe the redetermination instructions could say that!

So….

They lost his original packet (but maybe not, we may never know)
You can’t talk to a person at the number they provide.
They mailed letters to clients telling them their benefits were cancelled. (The person I spoke with said they received 1500 calls that morning)
They extended the deadline without bothering to tell anyone (This would have been something to send a letter about –it may have gone a long way to reduce the amount of calls they received. And really, nobody at DSS found it odd that 1500 cases were being cancelled at the same time, due to non-completion of their redeterminations? – Somebody had to MAIL all of these letters!)
They sent a hearing notice to return by fax within 4 days with a fax number that clearly doesn’t work.
And I still don’t know if anybody that actually works on his case has his forms at this point.

I feel like there was nothing accomplished here and there was an enormous amount of wasted time on both sides.

I suppose I will be in the dark until I get my notice in November.