World Down Syndrome Day – Using a Special Needs Trust for Disabled Child

March 21, 2014 marks the 9th anniversary of World Down Syndrome Day.  Children with special needs are very close to my heart, not only because I work with special needs families every day, but because my daughter’s cousin, Aaron, has Down Syndrome and I have watched his mother tirelessly advocate for him (check out

While there are many organizations out there to help steer families with special needs children as to what health care programs or education programs are available, many times, families are unaware as to what types of estate planning are available (or necessary) for their special needs child.  The following tips provide ideas for estate planning for your special needs child:

  1. When your child turns 18, do not forget that he or she is now an adult and you lose all of your rights to make financial, educational and health care related decisions for them.  You will need to consider whether you child is capable of signing a Durable Power of Attorney and Health Care surrogate designation to give you, as the parent, authority to make decisions for them, or you need to know if Guardian Advocacy or a guardianship is necessary.
  2. If your child is receiving SSI or Medicaid, you want to make sure they do not lose their benefits – talk to your family members about their estate planning and if they want to leave something to your special needs child, encourage them to do so in the form of a third party special needs trust (so that your child does not lose any government benefits they are receiving) which is created by another individual (not the special needs person) and funded with that person’s money (i.e., the grandparent or parent’s money).  The child never has control of the money and there are no payback provisions that are needed in the trust.
  3. Take a look at your own estate planning – consider setting up a special needs trust for your child so that, when you pass or if you become incapacitated, the proper planning is in place for your child.
  4. If your child inherits money (or receives a settlement from a lawsuit), and they are receiving Medicaid and/or SSI benefits, they do not have to lose their benefits.  The money can be transferred into a first party special needs trust known as a “d(4)a” or “d(4)c” trust which are special needs trusts set up by a parent, grandparent, guardian or the court  which allows the assets of the special needs child to be held in trust for their benefit while preserving their government benefits.  These types of trusts have payback provisions to the state that has provided the Medicaid benefits upon the death of the beneficiary.

Attorney, Laurie Ohall, is an estate planning and special needs attorney based in Brandon, Florida, serving clients throughout Tampa Bay.  If you have a developmentally disabled child that is close to legal age, contact a special needs attorney as soon as possible to determine the legal options that are best for your family.

By |2014-03-15T11:09:22+00:00March 15th, 2014|Categories: Estate Planning, Special Needs|0 Comments