After setting up a special needs trust the next step is to make sure your estate planning documents conform to your intentions and that the beneficiary of anything left to the special needs person is the trust rather than the individual. The same thing should be done for any beneficiary designations on any life insurance policies.

5. Have A Backup For Your Backup

Another thing to keep in mind is that the special needs trust is a long-term proposition and will likely need some updating in the course of time. When my family was faced with that situation, my wife and I named one of our closest friends to be the initial trustee. We did so with the intention that when our daughter, who is six years older than her brother, turned 30 she would have maturity and desire to step in and take over as the trustee.

6. Work With Knowledgeable Professionals

From my experience, both as a financial advisor and as the parent of a special needs individual, I know how important it is to work with an attorney who understands the regulatory ins and outs of setting up a special needs trust because if documents are not done correctly, that could disqualify that individual. The same is true for any other professionals you may engage, such as an accountant, because preparation of the tax return for a trust can be a lot trickier than a personal one.

Having a special needs child can be difficult, but with proper planning and the help and support of friends and family it can also be extremely rewarding. Take it from someone who knows.  

Kenneth Van Leeuwen, CFP, is managing director of Van Leeuwen & Company, a wealth management firm he founded in Princeton, N.J. in 1997.

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