Thank you for this information DoubleN. You are correct that a fiduciary would be cost-prohibitive in my case; I wish there was another way. All I need is some way for his money to be distributed evenly over the month so he doesn’t spend it all in the first few days (which is what he’s been doing for years). Yet, this information will be helpful for those in better financial circumstances in CA. I am glad it is working out for you and your daughter. 
Yes, my daughter would definitely spend all of hers right away now if she had access to her SSI funds, so I am glad that her psychiatrist at the time we applied had the foresight to request of the Social Security office that I be appointed as her Representative Payee, so she has no direct access to those funds. Since the SSI amount has never been enough to even handle living expenses, I can’t even imagine what life would be like if she had access to that money - there is a good chance she would have been homeless, as we are not wealthy.
Good luck to all on this thread of comments who are struggling with this problem. 
I believe the patent is supposed to come off of invega sustenna soon. So hopefully they will come out with a generic form of it that is not so expensive. Maybe more insurances will cover it then. Stay away from invega trinza even more expensive then invega sustenna.
In the us the government doesnt put a limit as to what a drug company can charge for a drug. But they do in other countries. When I googled it online I show patent to expire in us may 2019. The drug has been out for a while. They cant keep a patent on it forever.
The cost of trinza for a one year supply is still more than a year supply of sustenna . I think the cost is just ridiculous
I am glad that currently I have no copay on my daughter’s haloperidol with my health insurance…
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My son is 27 and we have a rental we built that will be paid off soon so we know he will always have a place to live. He’s on SSI and with SNAP etc. he should be able to stay off the streets. We are setting up a trust for him so he won’t lose his benefits either.
I want to let you know that recipients of SSI can now have a savings account which we have taken advantage of. It’s called an ABLE Account. There are limits but if you follow them their SSI is not taken away. We both have life insurance that will go into the Trust as well.
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https://www.pti-nps.com/nps/wp-content/uploads/2017/04/NPS_Drugs-Coming-Off-Patent-by-2022-Web.pdf
The last article briefly talks about how Johnson and Johnson sued teva trying to prevent them from coming out with a generic. It is unclear if a generic will be out this year. I highly doubt Johnson and Johnson will have exclusivity on this drug until 2031 though.
That is a huge worry… what happens when we are gone. Our goal is to make our son as independent as possible. He is 27, just moved into our rental ,3 miles away. He sleeps there, but comes to our house a lot during the day. We are all he has. We have made a trust fund as talked about above. I have my daughter and my sister as trust. Neither one though, would take him in if needed, and didn’t expect them to. It’s a scary thought.
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So thankful to have this info. I’m 70, not in great health. My sz son turns 33 in a few days. Hes just now approved for SSI after 3 years.
I live on SS and a tiny pension and savings. He gets snap, which helps. We don’t know yet if his benefit will come straight to him or to me. So glad to know about Trusts. Thank you all.
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All of this is good information and had made me try to be more compassionate. My stepson had drained me and his dad emotionally so much I haven’t cared in a long time. I know he is sick, but we have other children too. It doesn’t seem fair to put the burden on them or to give them less love.
My biggest thing is whoever has guardianship must make sure he is on meds. If he received 50,000 dollars from inhertance who knows what he would do. I dont think it would help him. I dont know of anyone who would want to take on the challenge of taken care of him. How to fix I dont know.
That inheritance should go into a trust with a trustee who will manage it.
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Finding a trustee for someone that is sz is really hard. No one in the family wants to deal with him anymore. The son is ill, but the son has really burned everyone and the sz does not have the ability to understand. They judge us for not making him well. But only one brother stepped forward to help, and to find out later he did this so could take advantage of his SSI. It is not easy for anyone to truly understand what it takes. The sz son is smart enough to know what’s going on and yet he cannot manage any income he gets and then challenges whoever is helping him. Would even a bank trustee be able to understand?
He needs to be on meds before he should receive any money. Which a trained professional could do, but not anyone related in the family, including his mother she herself, would try and take the money too.
I don’t know what to do, guess keep searching out trustees who truly understand.
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Me too, no copays for the Haloperidol dec shot my daughter gets monthly. No costs for the psychiatrist and therapist also now that the deductibles are met.
I get Obamacare for her and my husband because I am the only real breadwinner and I get free care for myself from the VA. We are lucky that everyone has insurance.
I got a life insurance policy for myself ($75k with my eldest son as beneficiary) and he has agreed to look after his 1/2 sister when I pass, but she cannot live with him. So I am getting her approved hopefully for disability, and county medical, food stamps and housing, if I can. Or at least if I can finish finding out how to set it up for the right time in the future, he will know what to do for her. My home needs to be figured out (will, deed, trust, etc) so she can continue to live here and my husband can’t put her out (he’s not her father) if I pass.
Her first and really only “serious” conversation when she became sane again on the Haldol 5 months ago was to ask what happens to her if I pass. She rarely has serious conversations, so that was weighing heavily in her psychotic mind even if she couldn’t express it during those sick years for it to be the first conversation when she was un-psychotic.
I plan to set up a special needs trust with my sisters and a list of backup trustees that know the struggles we have been though and the options we have tried that have worked. I will leave a detailed document to guide them with my estate things, Planning for the future after we are gone is just like planning for what we can do now- only the best we can. I have to trust the trustees will make the best decisions they can too. Make sure to discuss all this with the trustees periodically over the next few years. Good for you to think ahead!