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I would like to talk to others about their experience. And how to keep up with SSI rules as they change.

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In New York State, there are a number of pooled Special Needs Trusts where, as the name indicates, the money from many individuals is pooled and invested. The funds are tracked separately, however. There is an administrative fee associated with handling the funds and requests for reimbursement are made through the administrator. Interest is applied to each account, the same as it would be in an individual SNT. It is the administrator's responsibility to know the rules and is being paid to keep up on any changes. This may be something to consider, if you have that option where you are.
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Barbara, isn't this something that your lawyer should be doing?
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BarbBrooklyn,
Agree with you...do not attempt a SNT without the advice of a lawyer!
Hadnuff,
What are your goals you want to achieve? Get that info ready for the lawyer.
The lawyer can advise you if there are other vehicles (trusts) that would better serve you or your loved one's needs. Such as a Miller trust, etc.
These are all designed with the financial planning as a whole in mind.

I have reviewed SNT's for my dH, and maybe one is needed, but we don't have a huge amount to open one, $250,000 in assets, they say.  And second, since we need to use all of our money I found the restrictions for us prohibitive.

This is not to discourage you at all from seeking a SNT, but no one cares more about your own funds than oneself.

Impressing on me is the number of trusts set up that have never been funded.
Don't know why that is....
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If I recall correctly, Barbara is the trustee of a special needs trust that her mom set up for her disabled brother.

For a couple of years, I was one of three trustees on a special needs trust that an elderly friend set up for her grandson. We had an eldercare attorney advising us every step of the way and I have to assume that the young man's brother, who is trustee now, also has a lawyer to do this.
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The lawyer that set up the trust said that SSI rules don't change that much. I could consult her for an occasional question. Trying to preserve as much of brothers money as I can. So I don't want to pay a lawyer to help. I will use the bank financial person for help in planning investments. But wanted to just talk to someone else in my situation. Never was in charge of a trust before.
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Does he have SSI or SSD? Two different things. I am the trustee of a Special needs trust. I had it set up to protect nephews insurance money from my sister. Without it, he could not have gotten SSI it SSD. He would have had to spend the money down. SS and Medicaid are aware of the trust but cannot use it in predicting qualification. I have never been asked how it is being spent. I was told that it can't be used for housing or food. That is what SSI and SSD are for. The only way my handling of the trust would be questioned is if my nephew or beneficiary questions it. I keep receipts of all that is spent which is all for him. All Medicaid asks of me is a copy of the statement when I refile.
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