Family and Caregiver Schizophrenia Discussion Forum

Special Needs Trust


Has anyone had actual experience with a Special Needs Trust? Who is the trustee? Did you consider a Pooled Trust or contacting with and third party trustee (banker or attorney)?

I’m about to sign the paperwork creating the trust, and practical experience with their operation would help me greatly.


I don’t sign anything without 3 days contemplation.


I hired a lawyer to help with this. Since my son is an only child, and is not close to cousins, it was difficult to select a trustee, but I have asked a young couple who I trust who knows my son well. It can always be changed in the future if circumstances change.


I`m looking into this myself…along with guardianship.


My brother will be my trustee - He is 2 years younger than me - my 2 other cousins are backup trustees.
Its always a good idea to have close family members become trustees - In laws are not a good idea.

We had a lawyer set a Special Needs Trust Fund for me.


For those of you with experience with Special Needs Trusts, I’d like to know how often does the trustee make contact with the beneficiary? Rarely? Frequently?

Also, what kind of expenditures is the trustee making and is there ever a source of friction between the trustee and the beneficiary?

These issues are of concern to me and your frank comments would be much appreciated.



Barbie, thanks for your response.

While there is some information on the internet on the reasons to create a Special Needs Trust (as your postings detail) and information on the procedure for creating one, I have found almost nothing about the experience of living with a SNT. That is really the nexus of my original posting.

  • I’d like to know how the trust worked for the beneficiary over time.

  • did the original administrator accept and maintain responsibility for the trust over time?

  • what kind of demands were placed on the administrator (time, emotion, stress)?

  • did the beneficiary actually realize significant benefit from the existence of the trust?

  • what were the benefits of the trust, in actual experience (as opposed to expected or hypothetical)?

  • at what rate were funds disbursed from the trust?

  • given the option, does real world experience with the trust indicate that it would have been helpful to have more detailed provisions in the establishment of the trust to limit or expand the administrator’s authority?

It would be a great help to me if someone could address even one of my concerns. We, as parents, experience the trust as the creators, but how the trust actually plays out after our passing is obviously something we cannot evaluate ourselves. Perhaps this is not really the ideal forum to find these answers, since the trust administrator may often not be a parent, and a non-parent administrator would not be reading on this forum.

I hope I’m making sense.

Thanks to all who participate in this forum. I wouldn’t know where to turn without you.



I just asked in a group I’m in to see if anyone has done this or been the recipient.