Planning Our Estates

The other day I was sitting in our local Arc meeting and the conversation turned to a topic that concerns many of us who are caring for a son or daughter with special needs; especially those of us who have been lucky enough to have secured what I call the “golden ticket”; or the Medicaid waiver.  This waiver gives us access to programs that enrich the lives of our loved ones.  This topic of conversation had to do with what we as parents need to do to plan our estates to make sure that our sons or daughters do not lose access to these programs due to inheritance or gifts.  I stress once again that my concerns are all about access.  I certainly believe that it is my responsibility as a parent to provide for Ben as long as I can, which will hopefully be long after I’m gone. 

Along with the possible loss of benefits, there are other challenges we face when planning for our children’s future.  Who can we trust to manage our children’s money?  Most often that responsibility would fall to a sibling.  Then we are faced with the worry that we will over-burden our other child, or children.  Or, what if there isn’t a sibling who would be able to handle the responsibility?  If there are siblings how do we fairly divide our assets, while being sure that our child with a disability has enough to meet his needs?  These are all pressing questions that we must deal with when planning our futures.

Obviously, none of us have a crystal ball, and we can never be entirely sure what the best answer is for our particular situation.  Some parents with a child on public assistance believe that they need not worry about that child’s future and arrange for everything to go to their other children.  However, in today’s world, with a government that is almost out of money, how can we be sure that there will be adequate, if any future public assistance.  In that event, again we are faced with the responsibility falling on the shoulders of siblings or other family members

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 A few years ago before taking a trip overseas, Dennis and I decided it was time to join the ranks of responsible adults by putting together an estate plan in case we were both simultaneously hit by a bus.  After a phone conversation with our attorney we realized our special circumstances precluded us from being able to pull down a “fill-in-the-blanks” Last Will and Testament from  We actually needed to set up an appointment so he could go over the different options available for greatest protection for Ben.

This would be my first exposure to what is called a “Special Needs Trust”.  As the attorney explained, this would be the vehicle we could use to help manage Ben’s inheritance since he will never have the capacity to do so himself, while preserving his eligibility for public assistance through Medicaid and SSI.  Ben will inherit his share of our estate through this trust and a named trustee will manage how the money is spent.   In the future this trustee may, or may not be one of Ben’s brothers.  Only time will tell.

Strict rules which are laid out in the trust agreement apply with a Special Needs Trust.   The money spent from the trust on behalf of the beneficiary is restricted to certain items for the care of the individual.  Misuse of the funds can trigger a reduction in public benefits.  That is why the decision on who will be the trustee is an important one.  This particular Special Needs Trust is referred to as a third-party trust, meaning it is funded by sources other than the beneficiary.

Another type of Special Needs Trust is called a first-party trust.  This would be appropriate if the disabled person had a well-meaning “Rich Uncle Joe” who designated money in his will for his niece or nephew.   A nice gesture, but such an inheritance can put benefits and access to programs at risk.  To protect against this, the inheritance can be put into a first-party Special Needs Trust; meaning that it is funded by the beneficiary.

The rules on how the funds in these trusts can be spent and how those dollars spent may, or may not reduce SSI or Medicaid benefits are both strict and complicated.  My recommendation is to find a good attorney who specializes in this area for your particular state; and find a trusted friend or family member to serve as your trustee.

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