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!


  • 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.

8 thoughts on “Does everything really need to be this difficult?

  1. Dear God…..I haven’t even begun this process -Rob will be 18 in December and I’ve been living in the fantasy land called “Avoidance” – this is a wake up call for me to get my butt moving – so thanks for the rant, vent, whatever you want to call it – I appreciate it!


    • Patti, as I replied to another comment on the FB page; I’m sure there are other people that have it worse and I suppose I shouldn’t complain, but I do everything in my power to be sure I am doing everything correctly and on time. It’s just insane that they make you go through all of this and then have to do it all over again! The moral is KEEP COPIES OF EVERYTHING YOU DO!


  2. Other Comments (FB):

    Carol: Unreal
    August 31, 2013 at 12:52pm
    Brian: Incompetence has become its own business opportunity
    August 31, 2013 at 4:37pm
    Liza: Oh! I don’t even know what to say! What a terrible experience!
    August 31, 2013 at 8:56am
    Emily: Is this all at the state level? I would contact my representative, Governor’s office, newspapers & anyone else to complain. that is absolutely ridiculous!
    August 31, 2013 at 10:03am
    TasAnotherstep: Yes, it is, it’s totally insane. The poor woman who had to “suffer my wrath” suggested the same thing. I don’t know if I have it in me to sit “on hold” to complain. But maybe once I calm down a bit, I will. Like I said, I’m sure others have it worse and I really feel for them.
    August 31, 2013 at 10:19am
    Sue: Hi! Going through the same problems with M’s OT. They sent a letter to his dr. and facility saying they are denying his OT. Well-actually only 2 OT visits. Now we put in for 8 more. If they deny those – we have to go the hearing route! Not looking forward to it. They said a person with a traumatic brain injury should be able to be on a home exercise program by now-HELLO he has autism and MR too! Geez. There is a special place for people with special needs kids in heaven and there is NO PAPERWORK!!! Sending a hug your way!
    August 31, 2013 at 10:30am
    TasAnotherstep: I know, Sue! I feel your pain every time I see one of your posts!
    August 31, 2013 at 10:31am
    Emily: It’s absolutely ridiculous & I would complain to everyone. I work for the state & the decision makers aren’t always the brightest. It’ s a waste of time & money for the total inefficiency. No need for anyone to go through that, not to mention the waste of tax payer dollars for redoing unnecessary work.
    August 31, 2013 at 10:38am
    Tasanotherstep: Exactly! Taking 1500 calls could have easily been avoided and their time could have been spent on actually doing the job they were hired to do! (and yes….. the decision makers are NOT always the brightest!)
    August 31, 2013 at 10:41am
    Victoria: OMG! That happened to me for
    M. Talk about panic mode… not only did I hang on the phone like you I sent everything again by certified mail and they told me to go to the DSS office. I sat down there with a number in hand and several hours later M. had her benefits restored….ugh! Never was I told about the extension date!!!
    August 31, 2013 at 3:27pm
    Andy: Thanks for posting this. Our redetermination date was 8/15. So I will know what to expect when we get our letter in a few weeks. Also I agree that Ruthie was a huge help in the process for us too.
    August 31, 2013 at 8:25pm
    TasAnotherstep: She really was, Andy! KEEP COPIES!
    August 31, 2013 at 9:12pm


  3. Pingback: Will it go round in circles – Paperwork and “Please Press One” | Taking it a Step at a Time

  4. Pingback: But Wait, There’s More! | Taking it a Step at a Time

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