My husband and I just started discussions with our Investment guy and our attorney (ie. my brother in law) about setting up a Special Needs Trust for our son.  The question was asked what are we going to use these funds for?  I said I had no idea, that I thought the point of a Special Needs Trust was to protect his assets so that he can be medicare eligible - which if he is eligible for medicare, then he should be able to use it...  So anyone out there with a Special Needs Trust?  If so,  do you have any resources to help educate for this process and/or questions WE should be asking??

 

Thanks much.  Donna

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My understanding is that it has to be worded just right to protect him from the $2,000 cap set by Social Security. An estate attorney should know. The attorney we consulted to draw up power of attorney paperwork for our son mentioned it. We don't have one and I don't know what that wording is exactly.

Not much help,
Susan
The basic point of the special needs trust is to maintain eligibility for SSI and Medicaid. Your son will lose eligibility for those government programs if he has over $2000 in assets. Funds that are part of the trust are not counted towards the $2000 limit. There can be some tax advantages as well, depending on the type of trust you have.
We have our Special Needs Trust incorporated into our will. So if something happens to both my wife and I, all our assets go into the trust (our son is an only child). It is probably best to speak with an attorney who specializes in this area. Our attorney referred us to someone who specializes in this area of law.
This is actually pretty straightforward, and any estate planning attorney has encountered this. My law partner who does this kind of work does several of these every month. The differences are that unlike your other children, your son will never have total control over this money, no matter how old he gets. Thus he can't give it away or even will it to his own children. Hopefully, you're all alive when DMD is cured so that you can adjust your estate plan, but in the event you are not, then he would still, with the consent of a trustee who can be a family member, use the money for healthcare, education and items appropriate for his personal welfare. My recollection is that It's not so much about what he can do with it as it is what he can't do with it.
Donna,
My husband and I found an attorney who had some experience with these type of trusts. All the above comments ring true. We have it written so our son is the beneficiary having no ability to access the money and my husband and I are the trustees giving us the ability to administer the funds. It is a must to find someone with knowledge of these type of trusts. We have heard about adding to your estate but we chose to have it written separate and in our existing estate had a clause written so that any inheritance would go into the special needs trust and not directly to our son.
We are currently opening a SPECIAL NEEDS TRUST ACCOUNT for Timothy. It does protect certain assets that SSI/medicaid can't touch. However it can not pay for his rent or food but it can pay anything else. utilities, games, medical supplies, etc..etc..

If you can afford an attorney to do it for you, go for it. However there are many links about it if you google it. I have a few links myself that helps define it. You will also needs a beneficiary for it in case something should happen to him.

Google it for the state you live in and see if you can consult an atttorney.

Anyone set one of these up?  How much did the attorney charge?  We were quoted $1500.

 

How about trustees?  Anyone selected professional management?  What kind of fees and minimum assets are you finding?

Keith,  I can't answer all your questions yet -- I am also beginning to explore a Special Needs Trust for my grandson.  My son's lawyer referred us to a local (to their area) lawyer group who specializes in this area.  Their web site says that the average charge for a special needs trust is $3 - $5K.  I sent them an e-mail to start the process but they have not returned my contact request.  I am going to look into more this spring (after taxes) to get the ball rolling. 

 

As I go through the process, I will repost with some answers if I find them to your questions.

It is important as well to tell family members not to leave 
Money to your sons In their will either. If you don't have a trust set up yet, they will need to add that your sons inheritance should go directly into a newly created trust with you as the administrator.

Rosalene Graham said:

Keith,  I can't answer all your questions yet -- I am also beginning to explore a Special Needs Trust for my grandson.  My son's lawyer referred us to a local (to their area) lawyer group who specializes in this area.  Their web site says that the average charge for a special needs trust is $3 - $5K.  I sent them an e-mail to start the process but they have not returned my contact request.  I am going to look into more this spring (after taxes) to get the ball rolling. 

 

As I go through the process, I will repost with some answers if I find them to your questions.

Wow, this is complicated (and expensive!) stuff. I was wondering if, in the past year, any of you who were starting the process of setting up a special needs trust could update this discussion with more information (such as Keith's questions above). I was also wondering what the difference is between a "special needs trust" and a "disability trust." Anyone?

Also, with any of these trusts, is it possible for other people (such as friends & relatives) to add/donate/contribute money to the trust fund? And can this be easily administered?

Thanks!

Kim is absolutely right.  If you any family wants to leave an inheritance for your son(s) with DMD, then make sure they know to reference the Special Needs trust.  We had started setting one up in VA with a great woman, around $1500, but we didn't finish because we moved in the middle of it all.  The cost included a living will and power of attorneys. 

It's tough and difficult. Look to local friends/family or special needs resources to get recommendations for estate attorneys that specialize in special needs trusts.

I'm not so much interested in an *inheritance* (at the moment, anyway)... I simply want to set up a fund so that we have extra money set aside for treatments, medications, equipment, home modifications, etc. I was thinking of something like this but that people could donate money to.

Liisa Underwood said:

Kim is absolutely right.  If you any family wants to leave an inheritance for your son(s) with DMD, then make sure they know to reference the Special Needs trust.  We had started setting one up in VA with a great woman, around $1500, but we didn't finish because we moved in the middle of it all.  The cost included a living will and power of attorneys. 

It's tough and difficult. Look to local friends/family or special needs resources to get recommendations for estate attorneys that specialize in special needs trusts.

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