But Wait, There’s More!


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……………..


Will it go round in circles – Paperwork and “Please Press One”

or: “For No Help What-So-Ever; Please Press #1”



and Contact Numbers that rarely bring one to an actual person…. “Please press One”

or “Please complete this form. A form that you or no one you know will ever be able to understand – we do not even understand the form and can not help you in any way,  but we do expect you to be able to complete it by…..”

Not a fan of the paperwork. (click here for a fun romp through our state’s system)

Not a fan of the mountains of unnecessary mail that comes my way.

This (4 page) letter is to inform you that you have been assigned a new contact – Effective immediately, your new contact is: Customer Service at 555-5555.

Is it really necessary to send a 4 page notice at a cost of close to $2.00 in postage to both DC and myself to inform us that our new contact is “Customer Service”? Especially since the last 4 times we were notified of a new case manager their name just happened to be “Customer Service” as well.

I have developed a real aversion to opening my mail – ask anyone that has ever seen my kitchen table. Fortunately it is only DC and I that have to use the kitchen table , so there is still room enough for us, for now.

I have been a single mother for about 22 years so all of this paperwork has always fallen to me. In my opinion, the paperwork got worse and more confusing after DC turned 18. At this point, I am used to it and it is more annoying than anything else. Why do we have to do the whole probate thing every three years? Is it to make certain that DC still has autism? Two redeterminations every year, a social security report once a year and an audit anytime they feel like it. Reporting his wages every month – which really is not a big deal in the grand scheme of things – but sitting though that automated system can drive one to want to ‘slam head on table’. There is an app for this now and when it is working, is much easier. When it is not working we have to resort to the ‘slam head on table’ automated system. After using the app or the ‘SHOT’ system, I receive 2 letters, one for me and another for DC, thanking me for reporting his wages and an estimate of his upcoming benefits. Later in the month I receive two more with the actual amount of his benefits. Four letters every month at more than 1.00 in postage each. It seems like such a waste of money and resources to me, but what do I know?

DC’s father’s only contribution since DC turned 18 is health insurance. He retired from the police force before the pending contract took effect when they would have had to begin to contribute for dependent coverage,  so as it stands DC is covered at no charge.

A few weeks ago, I received a letter from the insurance company. It was a good sized envelope – more than one page, I was sure – so I let it sit for about a week or so. I finally decided that I really should open it since I don’t normally get mail from the insurance company. The insurance is not in my name so the mail usually goes directly to his Dad. His insurance is one of the few things that we really have not had any issues with over the years.

What would normally happen here is:

  • I would read the whole thing –
  • Give it to his father the next time he came to pick up DC –
  • Explain what is was all about –
  • Explain in detail what he had to do to take care of it.

But….. I had just finished DC’s redetermination (a good 10 pages) and completed another redetermination over the phone at 7:00 am on a Saturday morning (yes, they called at 7am on a Saturday because they were “working overtime” which, I assume must mean that if they are up and working everyone else should be), so after reading one paragraph, I decided I was just not going to read it at all. I would just give it to his Dad.

From the paragraph I did read I gathered that this was about DC’s ER visit after his first seizure in June. I also surmised that they were not willing to pay the amount that the ER doctor had charged for the visit.

I gave him the letter the next time he arrived to pick up DC. He looked confused – just staring at the pages. I did tell him that I was boycotting paperwork that was not mine but did explain to him what I thought it was all about…. reasonable and customary etc.

So off he went straight on into his first foray through the world of paperwork, forms and 1-800 numbers.

The following week he came back so beside himself at the amount of time he had spent calling numbers that provided no information at all. He was convinced that they were just sending him ’round in circles.

I had to laugh – not at him,

…maybe just a little…

but at how perplexed he was over all of this. Until then he did not realize just how much nonsense I and others have to go through just to have a question answered – just to talk to a person. And this was just the insurance, not any of the agencies that we all have to deal with.

He said that he did actually get to speak to one person who gave him yet another number to call that turned out to be some sort of factory in Minnesota.

He was done at this point (and yes, I was still laughing, not at him – well maybe a little – but at his reaction to the whole thing – it was all new to him).

He left me with a stamped self addressed envelope (because he was leaving for Florida for the winter the following day) to send him any bill that I might receive so he can just pay it. He was so beside himself that he was willing to just give up and pay whatever they wanted in order to never have to call them again.

That may have been their plan all along…

and welcome to my world…..