special needs trust and guardianship

Special Needs Trust and Guardianship

As a part of our transition to adulthood services, we often get questions about the future of the family member. Many of our clients will go on to have productive lives, live alone, get married, have children and all those things. But we also have a certain population that probably won’t live alone. Those families are always very concerned about the future of their family member, as they age and as they leave this earth, in whatever capacity that is.


We want to be sure we’re being mindful and preparing for those things. We have many resources that we can refer you to for help in those areas, but today let’s talk about one of the things we most often get questions about—guardianship and special needs trusts.


If you’re concerned about your family member not living alone, maybe living in a group home or some community that’s designed for special needs, it’s going to be very important for you to look into guardianship and special needs trusts.


Legal guardianship should be in place when the child turns 18. Guardianship is important because it allows you to make medical and financial decisions. There are many such decisions to be made when your special needs child becomes an adult, but if you don’t have legal guardianship in place, you will not have a legal right to make those decisions and that can be a safety issue for your child. For example, if they’re in the hospital, and you don’t have guardianship, you will not be able to make those medical decisions because you are not a legal guardian and they are a legal adult.


We’ve heard stories about how the special needs family member gets mad at the family, so when the doctor asks, “Can I talk to your parents?” they say, “No!” They don’t understand the ramifications of saying no, but their “no” has legal consequences anyway.


it’s important that we protect our family members by thinking about guardianship before it’s needed. There are many different types of guardianship, and we can help you find places that will set that up for you.  

Special Needs Trust 

The other thing to think about is a special needs trust. Many of our family members who are going to be needing assistance throughout their lives are on Medicaid or some kind of government assistance. With a program like that you really have to be indigent. You can’t have financial resources. So if you want your family member to inherit some of your estate, it has to be sheltered in a special type of trust. These trusts are established by the same people who do guardianships, and they’re established to protect you and protect the family member. If you were to leave part of your estate to your family member and Medicaid were to find out that they had assets and had been receiving services, Medicaid could come back and try to redeem compensation for those services. This could also result in your family member losing Medicaid entirely.


Many of our kiddos are on Medicaid not because of financial reasons, but rather because of a medical condition.  If your child is on Medicaid, you have to be mindful of this when you plan for your estate.

There are also different types of insurance policies and things that can affect the income of that person. On the event of your death, your family member could receive a death benefit, and that could take them over the Medicaid cap. This is another very important thing to look into.


We can help you find resources for any of these things. We can point you toward the right people to help you plan for your child’s whole life. This kind of planning can be overwhelming, but you don’t have to do it alone. We are more than happy to talk to you and help you with these issues. 

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