Appealing a special needs trust, what a nightmare!

Here is my story.  When my mother passed away in 2014 i was on ssi.  She did not want me to lose my benefits so she left me out of the will.  It was understood that a trust would be set up for me.  My sister received a larger inheritance to fund a trust.  My sister obtained a lawyer and a special needs revocable trust was set up on my behalf.  2 years went by and i had to do a review with Social Security as they do from time to time.  They asked me a series of questions, one being do you have a trust.  I had nothing to hide, so i said yes.  The first thing they said is why do we not know this.  I had assumed that papers were mailed from the attorney and i was good.  So, this was the first big mistake.
Mistake # 1
1. Not notifying Social Security about the trust.

I had to give tons of information showing 4 years of my checking account, my mothers will and  how the trust was funded.  This process took weeks and 7 trips to the Social Security office.  The result from this was that the trust was not good and i owe all the money back from 2 years, $17, 993 and 3 cents.

Time to get a Lawyer
I find the best lawyer for this type of case.  A lawyer that does nothing but set up special needs trust.  I should have went with this type of lawyer in the beginning but i figured my sister new what she was doing and i never gave it a thought at the time.

Mistake # 2
2.  When setting up a trust get a lawyer who knows trusts inside and out, not an everyday lawyer.

Here is where it really gets confusing.  I meet with the Special needs trust attorney and she says that the trust is good, as long as you followed the rules of the trust.  She looks over everything and says your good and appeals.  The appeal goes to what they they call the Tribunal.  This is a panel the reviews cases for Social Security.  I get back the appeal letter and a date is set to meet at the Social Security office.  This time i bring an attorney with me to the Social Security office.  This is now my 8th time down there but at least i have some support.

I go up to the window with my attorney and proceed to talk to the same lady, who is quite rude and who i have talked to before.  This time the attorney is explaining to her why the trust is good.  She is caught off guard by his Questions.  He asks to see the results from the Tribunal and she says she can not give him the information.  He states the case why the trust is good and asks her for her name and say to her, do you understand our position.  She says smiling, yes, and i should receive another letter in 2 weeks.

Only 3 days go by and i get the letter, i could not believe how fast it came.  The letter states that you brought us no new evidence and i am denied.  There are 4 levels of appeal.
4 levels of appeal
• Reconsideration;
• Hearing by an administrative law judge;
• Review by the Appeals Council; and
• Federal Court review.

This was the reconsideration level that i just lost.  Your odds are not very good at winning at this level.  By the way, you are cut off from your monthly check and your medical before you get to this point.  They do not consider or care that you have a disability, it is all about the money.

When people hear the word trust they think that you have a lot of money.  That may be true in some cases, but not mine.  By the time i pay back money and attorney fees i will have very little left.  I will also have no insurance.  The reason for the trust is that it can make your life a bit better and buy some comforts.  Here is what you can buy with a special needs trust.
What can a special needs trust pay for

What should i do?  At this point, the attorney's can show nothing as to why my trust is good, other than their opinion.  I owe them for the reconsideration part of the appeal.  Do i proceed with the appeal?  I am not sure.  Maybe someone reading this has a suggestion.  Let me know.  I feel that i might be beating a dead horse.  Nobody seems to have a good answer for me.  I have Social Security and there lawyers telling me it is not good and my attorney saying it is good, what a mess.  As of 11/3/2018 i got another letter demanding money and i am cut off the system.  I am writing this post to just vent my feelings and hopefully warning someone what not to do.  Get the right attorney to set up a special needs trust.  Do your homework and let Social Security know what your doing.  Your mental state is at risk and this type of situation is very stressful.  Had i gone to this attorney that i have now, i probably would not be in this situation.  I will let you know what my decision will be in the next post.