Family and Caregiver Schizophrenia Discussion Forum

SSDI Re-determination in Arizona

I’m just livid right now. My son, who is in his thirties, was diagnosed as paranoid schizophrenic in his mid to late-twenties although his problems began as early as five. He was, at one time, the youngest to be diagnosed as bi-polar in our state and along with other developmental and social problems he was treated for many of his formative years both medically and via physician/counseling which we participated in as a family. He lived in house for a while since he was not then able to control his responses to general life stresses. As he entered high school though he got dropped by the system and eventually he made a decision to stop his meds but this appeared to actually have worked for him in some ways at the time. He became able to have a social life, friends, etc. Years later I realized he had traded his meds for pot but, you know, whatever works for him I cannot deny and it was a marked improvement from the meds prescribed. He went on to have some failures (he spent a year living on the streets, problems getting or keeping work) but also some successes but he did what he could to support himself with minimal help from his family until the last job he worked. There he became obsessed with it, making odd choices like working overnight at his job so he’d be there first thing the next morning (for no additional pay) and started excluding everything else in his life until it all just became too much. It was at this time he was diagnosed with paranoid schizophrenia and that was very rough to face for him and for his family. He applied and receives social security. He tried conventional treatment for this diagnosis for awhile but has chosen to not follow it despite my warnings and wishes. He doesn’t feel like he can afford treatment (that he also doesn’t want) and to also live somewhere and to eat. Although it’s a struggle, he still manages to hold his own after 4 or 5 years and I’m quite proud of him. He won’t ever be without his issues and problems but he manages on his own, is very likable although he continues to have problems holding onto long term relationship with anyone. He chose last year to move to AZ where there is no family or friends to be of assistance but he’s very happy there. Currently he’s up for re-determination for his benefits and he’s been told to expect his benefits to be denied because he isn’t seeking treatment. If he doesn’t get treatment it’s looked at as if he doesn’t need treatment so then it’s felt he doesn’t need his benefits either which is all he has to pay for somewhere to live and to eat and to take care of other medical problems. I don’t for one minute believe that he can work but if they take away his benefits then he will have no way to support himself and that is the one thing he’s managed to do - keep himself off the street and remain self sufficient. It is unlikely that he would consider moving back home. My problem is what are they thinking? He was doing fine as he was, not being a problem to himself or others. How do they think using someones benefits as a way to force treatment on people is going to work out for someone with severe issues? Do they want to make things worse instead of better? Because it sure feels like it to me. Do they understand how much worse worse could be? I’ve been lucky. You know, I’ve lived these years since he was 18 being grateful because I didn’t expect him to survive to 18 and here he is in his thirties. I’d like him to survive me so having him have to deal all over with this again has me understandably concerned. How can they take someone that is managing well enough as he is, happy enough as he is and be so arbitrary in their expectations? Nothing he has can be cured. He will always have to live with what he has. He’s devastated and the worry is making him, well, crazy and he hasn’t even completed the re-determination yet. I don’t know what to advise him on any of it. Nor do I think there’s anything that I can actually do. He’s an adult. I can’t force him into treatment and with the distances involved I can’t be of any practical help.

Has he spoken to the personal that have helped him apply for his re determination? I work doing applications for medical, and although the applicant regulations might be different for SSDI. I am sure they cannot deny his need with his diagnosis. I would consider speaking with someone who works there to get clear information of what is going on. With his diagnosis I would also look into becoming his authorized representative in the application for re determination process, so you could assist him with any issues that should arise, such as this.