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

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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. 24th) and a copy of the policy I called SS (on the 27th, 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 25th 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 17th 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 ……….

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But Wait, There’s More!

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If you have been around here for a while, you may remember the whole Social Security fiasco that began in September/October 2016. (If not, you can read it here)

I will not rehash all of the details again, but long story short I had an account that Social Security determined was a resource. Contrary to popular belief, I do know what I am doing; I did check into that many years ago, and I knew that they were wrong. But still I was required to close the account, spend it down, and prove I had spent it on him. Until it was spent, his benefits would be suspended.

Even though I knew they were wrong, a suspension of his benefits until I could prove them wrong could snowball into other areas and his day program. (read how it all goes together in our area here). I spent it down and sent all of the information to the caseworker.

Within 4 days, I received a letter stating that his benefits would not be suspended due to the spend down but I would be required to pay back 12,000.00 in benefits that he has received over the last year and a half (12,000.00 over a 2600.00 account)

Before contacting an attorney, I started the appeals process. I was not appealing the payback, I was appealing the account. I knew they were wrong.  I mailed the form on November 4, 2016 and waited to receive an appeal date.

I heard nothing.

On November 28, I sent another form along with the letter below. I decided to include it at the last minute.

  The enclosed appeal form was mailed on November 4, 2016. As of today, (November 28, 2016) I have not received any word or notification of an appeal date.

   Because historically things tend to get “lost”, I did not want to sit and wait for a date only to find out after the 60 day appeal window had expired, that the form was never received or seen.

  I am re-sending a copy of the form along with this information about the account in question:

  The account in question was a life insurance policy that I purchased when DC was an infant.

The premise was that I could turn it over to him when he was 18 and it would then be his policy and the premium would never increase.

  As he was an infant at the time, I did not know that he would be diagnosed with Autism and not understand money, never mind an insurance policy. Due to this diagnosis and his very limited capabilities the account was never turned over to him.

I was the owner of the account.

He was the INSURED.

I was the beneficiary.

  As I was told by the insurance company more than once, he had no rights to the account. Even if he could understand what an insurance policy was, he had no rights to it. He was the insured, only.

  He could not withdraw the cash value. He could not close the account. He had no rights to the account at all.

  I did close the account and spend the cash value of 2,600 some odd dollars on him, only because I was told that his benefits would be suspended until I did. SPENDING IT DOWN WAS IN NO WAY AN INDICATION OF MY AGREEMENT WITH THE DETERMINATION!

  The woman who processed his re-determination insisted that this account was considered a resource for him because in theory I could very well cash it out and give him the money.

  If we are going to use that line of thinking, I could cash my paycheck and give it to him (he has no right to that either). She also said that if/when I die that this account would become the property of someone else. This is true but then THAT person would be the owner of the account, HE WOULD STILL BE THE INSURED and that person would then be the beneficiary. He would still have no rights to the account.

 

I waited for an appeal date…. and waited.

On December 17 while still not having an appeal date, I received another kick in the face; my step-father, against my wishes, saw fit to make DC a beneficiary on a small life insurance policy and the insurance company had contacted me about a payout (more about that later). This I knew was going to be a problem – this was considered a resource. I knew that for a fact (because, again I do know things).

This was happening while I still had the first 12,000.00 hanging over my head.

I got home and checked the mail, and there was still no appeal date, so I got on the phone. I was not sure who I should speak to but I waited the 45 minutes on hold and finally got a person at social security.

I explained that I had filled out two appeal forms, one on November 4 and another on November 28 and I had still not received an appeal date.

She checked the records and came back and told me that the issue was disposed of. The account was not considered a resource.

Really? I have spent all of this time waiting for an appeal date and the issue was disposed of but no one bothered to inform me?

She apologized and went to speak with someone I assumed was her supervisor, who told her that she did not know why I did not receive any notification. I asked for a letter stating that this issue was resolved, for my records. I was told I would receive that letter shortly.

In the end I was correct. Unfortunately it cost me $2600.00, which no one seemed to mention or apologize for and no one saw fit to notify me while I was still waiting for a date.

I certainly would have taken this new insurance policy issue a little bit better if I had not had this other issue hanging over my head.

Let’s just look at this whole mess:

I did my due diligence and checked into that account more than once.

They were wrong, but before that was determined, I was required to spend $2600.00 so his benefits would not be suspended.

If I had not appealed, I would now be paying back $12,000.00 for absolutely no reason other than the case worker did not know what she was talking about. I explained it to her exactly the way I explained it in the appeal letter, more than once and I was also required to send a copy of the policy to her at the time, so I know that there had been no miscommunication with the caseworker. She either just did not know what she was doing or just saw an opportunity to make herself look better in the eyes of the agency by collecting a good chunk of money.

We are required to jump though so many hoops when our children reach adulthood and unfortunately we are at the mercy of these agencies who seem know next to nothing when it comes to our children, and what we are required to know and do. As a parents, we jump through every hoop laid out in front of us to ensure that everything is in place for or child’s future, because that is really what all of this is about, isn’t it?

Bottom line is, you can not trust that you are not being taken advantage of by these people and you can not trust that they know what they are doing – always appeal!

But wait, there’s still more! (And it gets really ridiculous at one point)

We will get to that next week……………..

 

Social Security, Adult Children, Lessons Learned and a Heads Up

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If you follow my Facebook page at all, you may have seen the status below. I wrote it out of aggravation but mostly because it was something that I unknowingly did (or didn’t do) that I wanted to share it in the hopes of keeping someone from making the same mistake.

If you did read the status earlier, do not stop here. There is more to the story and it only gets worse, so please read on…

Before I get to that I want to say that I always did everything for DC ahead of time. I never waited until the last minute for anything. I wanted everything in place for the time when I was no longer around to look after him. When you are a single parent of a child with no siblings and you begin to get older, this moves to the forefront of your mind. If you have followed this blog for any length of time, you know that this something that completely occupies my mind.

Here is the beginning of the story. The account in question as it turns out, had a cash out value of $2600.00. Owning the  account in question was technically my fault, not for lack of doing my due diligence but more for the lack of not receiving the correct information from people who were supposed to know. But really, even if this was something that I had not checked into or something that I had forgotten about, this was a mistake – a plain and simple mistake.

We had our annual Social Security assessment the other day.
 I may be the most unorganized person in the world, but not when it comes to my child. I go out of my way to make sure everything is done on time and properly. 12 years ago we had the paperwork drawn up for his “Special Needs” Trust – that will be funded with a “second to die” policy. I made sure NOTHING was in his name. I made sure that everyone knew not to buy him savings bonds or leave money to him in their will. When DC turned 18, we had to apply for SS in order to apply for Title 19, in order to keep our DDS (Department of Developmental Services) caseworker and DDS funding for his work program and for future placement when I (and his Dad) am gone as he will most likely be living in a group home because there is no one else.

Years ago through my job, I purchased a life insurance policy for myself. It was one of those policies that they offer at a very low premium that never increases even if you leave the employer that you purchased it through. DC was an infant at the time.

They also talked me into a policy for DC. When they first brought it up,  I though it was odd. Why would anyone buy a policy on their child?

 It was explained to me that the benefit of buying it then and at an even smaller premium than my own was that when he turned 18, I could turn it over to him. It would be his policy to do with what he wished. He could cash it out for the cash value or he could keep it as his own life insurance at the same premium. He was an infant at the time so of course I did not know that when he was 18 he would not be able to understand money, hold a regular job, tell time or even understand what a life insurance policy is.

Because he does not understand any of this I never transferred it over to him. The premiums were paid electronically all of these years from my checking account and the premiums were combined with mine and so small that I really just didn’t pay attention any more – I really just forgot about it. I would get a statement once a year, but other than that, it was not anything that was on my mind.  I had at one time planned on closing it since, not having transferred it over to him made it of no benefit to him, but since it was not his account and there was no urgency to close it, I just let it go. I was involved with so much other paperwork at the time, this was the last thing on my mind.

I DID mention this account to anyone and everyone that asked, the attorney who did our trust, and SS when we had our re-determinations. The only reasons I would not have mentioned it every single time were, 1. it didn’t happen to be a question they asked at that particular time or 2. because I had been told that since I did not turn it over to him, he had absolutely no rights to the account. I was the owner, it was not his account.

For some reason during our last re-determination this policy became an issue. Again, as I never turned it over to him, I am the account owner. If he were capable of understanding what a policy is and said “Oh let me cash this out.” he would not be able to do so because I am the owner of the account. No one could do anything with this policy but me. But, because it exists, and he is the insured even though he does not own or will ever benefit from the account and could not access the cash out value or even be given any information about the account due to privacy laws  – I was told that his benefits would be suspended until I could get the account closed, spend the money and prove I had spent it on him. Which is fine, I could do that, but these things are what my nightmares are made of. I am glad this happened while I am alive to fix it, but what if it happened later when it accumulated even more money?

 

I did just that. I closed the account, spent the money on things that he would be needing anyway. I sent all of the information to the Social Security office and I hoped that because I got the account closed and the money spent before the deadline his benefits would not be interrupted.

Well, I received a letter yesterday with the the results of the review. The good news is that his benefits will not be suspended because I was able to close the account and spend the money.

The bad news?

Because he had over 2000.00 in resources (that could not be withdrawn or accessed by him <I am going to keep saying that>, in an account that was not his and he was not the owner of) we have to pay back 12,000.00 – I’ll spell that out for you – Twelve Thousand Dollars – in benefits that he received between his last re-determination (May 2015) and this current re-determination in September 2016. Because he had 600.00 too much during that time period, he should not have been able to collect Social Security benefits and it has to be paid back.

My choices are – Write a check for 12,000.00 (they want it all in one lump sum, not in payments) or they will deduct 73.00 from his monthly checks. He will be paying this back for 13 years!

Listen, I am one for following the rules – always and for everything – I admit that I can be a little bit obsessive about it at times and I fully admit that this was my fault, an honest mistake. I was not keeping it a secret – if I had, they would not have known about it. I was sure there would be some sort of penalty to pay and being that this was my mistake, I was perfectly willing to pay it to keep his benefits in place so I do not have to worry about him later.

It is unfortunate that this system we have for people with disabilities is set up so these people (our children) are required to live in poverty. It is designed that way.  I understand that in order to maintain this level of poverty recipients  can not have over $2000.00 at any given time. People make mistakes, honest mistakes. We as parents should not have to live in fear that we may have over-looked something or that a family member might leave our children money against our wishes and without our knowledge, make them a beneficiary on a life insurance policy or in this case, have an account that was supposed to be fine because HE WAS NOT THE OWNER and had no rights to the account – and so many other scenarios that I can’t even come up with now that are out of our control (Give me a few days to obsess about what else can happen and I am sure I can add to that list of “what if’s”). I agree that there should be consequences and penalties for errors. I don’t believe that my child who was not responsible for any of this should be made to pay back 12K in Social Security benefits for the next 13 years. I would have been perfectly willing to transfer that $2600.00 from the account (that he had no rights to and could not access) directly to Social Security.

Although I do believe in following the rules and owning up to my mistakes, twelve thousand dollars for a 600.00 dollar mistake seems a bit extreme.

So the moral to this story is:

If you believe you are being careful and following every rule, you may find out otherwise.

If you’ve done your due diligence and looked into anything that may be a problem, you probably need to look further.

If you have a question about anything you or your child have and even if you are told that it is fine – it may not be fine after all.

I am sure that this will not be the end of the story but I just wanted to share it to possibly save someone else from making the same mistake.

 

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My apologies if this is littered with typos or half sentences – anger does not enhance my already poor proofreading skills in the least…   

 

 

 

 

 

 

 

 

 

I think there’s a form for that…

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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 16th 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 26th 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 30th – 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 20th. 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.

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 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).

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 16th 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 26th 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 30th – 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 recopy 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 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 20th. 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 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.