Family Members Forum: Special Needs Trustsby Christina Bruni Patient Expert
I've decided to talk in detail about setting up a special needs trust for your son or daughter in the event they are diagnosed with schizophrenia and won't be able to earn income in order to function on their own. I might have talked about this on occasion in the past yet it is a recovery topic that I'm totally inflamed about and will always be totally inflamed about.
A special needs trust is exempt from countable income for the purposes of your loved one's eligibility for SSI or Medicaid. That is, your son or daughter can withdraw and use these funds to pay for living expenses without forfeiting their government benefits or having their disability benefits reduced.
Research indicates that about 15 percent of the individuals diagnosed with schizophrenia will have ongoing episodes throughout their lives. This is often because they have a treatment-resistant or refractory type of schizophrenia. In a significant number of cases, if a person doesn't get early intervention at the first start of their symptoms, and their treatment is delayed, they could wind up symptomatic throughout their lives.
They could wind up not being able to hold a job. And if they have ongoing symptoms, they might be able to work at a job, yet they will undoubtedly have a harder time of it than if they got treated before their disability progressed.
Two real-life examples make it perfectly clear why a parent should set up a special needs trust for their son or daughter who collects SSI or Medicaid. A guy I know had a mother who had millions, and when she died she left the money to her daughter, without setting up a special needs trust for the guy. The daughter holds on to her money and doesn't give any of it to her brother, who collects SSI.
In another example, a father died and didn't set up a special needs trust for his son, who turned 60 this year. The son asked me if it would be OK for him to host a birthday party for himself and ask the guests to pay for their meals. No, that is not OK: for guests to pay for their dinners when you're the host of a party. If the father had set up a special needs trust, the son would've had the money for a modest, self-funded party.
And too, your loved one shouldn't have to live in a dangerous apartment complex or group home of questionable reputation. They shouldn't have to receive substandard medical and psychiatric care because they can't afford to see better providers.
The two guys in the examples above were left out in the cold by their parents. That's heartless. It ticks me off that these guys were left to fend for themselves.
I will defer now to the NAMI website for a detailed special needs trust primer and gold standard special needs trust homepage. Your local NAMI chapter too might have an information session where an estate attorney comes in to talk to its members about setting up a special needs trust.
Face it: not everyone with schizophrenia is functional to the degree that they can earn income to support themselves via employment. I don't want to sound dire about your loved one's prospects. Yet if you have figured out that your son or daughter will need to collect SSI the rest of their lives, the only human answer is to set up a special needs trust.
This is a topic that so inflames me I might repeat talking about it in the coming years after some time has passed since I wrote this SharePost.
Most people diagnosed with schizophrenia can and do recover. Yet we can't forget the significant minority of individuals with schizophrenia who need a greater assist in their lives. For these people, it's imperative that their parents set up a special needs trust for them.