Your New Schizophrenia Diagnosis: Explore Your Options

  • As I wrote about in Recovery Stories: Christina Bruni in September, I have strong views that I formed as a result of my time living in the mental health system.

    I will give an introduction in this SharePost and then offer a suggestion as to how to proceed: as person newly diagnosed with schizophrenia, or as the parent of a son or daughter who gets a diagnosis.

     

    I was 22 when I was diagnosed: at a time when the diagnosis most often occurs: in a person's late teens and early twenties.

     

    In the fall of 1987, there were limited options for what a young person could do.  I attended a day program for a year and another day program after that for a year.

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    For a young person with so much potential who has lived in the world and is able to entertain setting goals like going to work or school: I don't recommend a long-term stay in a day program. Long-term to me is longer than a year.

     

    Instead: I recommend therapy, either cognitive therapy or talk therapy depending on what your presenting problems are and what kind of therapy would be the best to address the specific problem.  See my SharePosts on Cognitive Therapy Part One and Cognitive Therapy Part Two and on Finding a Therapist Part One and Finding a Therapist Part Two.

     

    A better option in my humble opinion would be therapy of some kind coupled with attendance at an IPRT, that is, an Intensive Psychiatric Rehabilitation Treatment Center.  Zucker-Hillside Hospital operates an IPRT in Hollis, Queens in New York City where I have given talks to their clients about setting goals like going to work or school and succeeding in recovery.

     

    Zucker-Hillside Hospital IPRT can be reached at (718) 465-3294.

     

    The benefit of an IPRT is that it is specifically geared to setting a specific goal, developing an action plan to achieve the goal, and assessing the outcome of the goal completion at a certain point in the future.  Mostly, the IPRT goal has an achieve-by date within 24 months.

     

    The second day program I attended was a horror.  The group therapy would devolve into topics such as "Why was the train late today?"  My counselor at this program told me: "How do you expect someone to employ you if you dress very Greenwich Village?"

     

    At the residence I lived in at the same time, I was also unfortunately lumped into a category with everyone else.  I would not accept my dysfunctional room mates' behavior and endlessly fought with the Director of the housing program.  At one point, I called in the President of the local NAMI chapter to sit in on a meeting with my parents and the Director.

     

    Years later he told me: "You were fine talking to them on your own Chris.  You didn't need me."

     

    I fear that even today-circa 2012-the staff in the mental health system are confronted so often with people they dub "helpless cases" or "hopeless cases" that they are ill-equipped to motivate their clients that real recovery is possible.

     

    Most staff see clients at their worst and think nothing better is possible for them.  So people with a diagnosis of schizophrenia will be tempted to give up hope because no one they meet reinforces that a better life is possible.

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    I have no answer for why I fought so loudly and so assertively with the staff when I perceive even now that most peers would believe the snow job they're given about their capabilities. 

     

    Yes, when staff so often come in contact with people who seemingly can't function, a person with schizophrenia who can string two sentences together is deemed either to not have schizophrenia at all or else is limited in the mental health services available to him or her because the focus is on those who are worse off.

     

    Now, not everyone diagnosed with schizophrenia will have the same goals and abilities to achieve those goals.  For some of us, CEO is possible.  For others, volunteer work.

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    I don't care to judge people based on the value of their economic contribution to society.  For those of us in recovery, it's a noble goal to want to live life well, whatever the version of "well" is that works for each of us.  Your version of well might not look like my version of well.

     

    As you can see, I have strong views because of my earliest experiences with the mental health system.  I would like to propose an alternative for those of us who have the potential to accomplish something other than warming a chair in a day program for the rest of our lives.

     

    First, if you are a parent of a son or daughter who lives at home who is newly diagnosed: encourage them to get outside the house and do the normal things a young person would do even if he or she didn't have a diagnosis.

     

    Encourage instead of browbeating especially if your son or daughter might have negative symptoms.  In the next SharePost, I'll talk about combating negative symptoms and self-stigma in greater detail.

     

    This is what I recommend: a young person attend a support group if there is one available or use an online support forum like StrengthOfUs.  If you are young and diagnosed with schizophrenia and live at home: consider getting a part-time job or going to school.

     

    It's well and fine and good if you need to collect a government disability check.  My advice is for those of us who want to feel better about ourselves and not sit on the couch all day too: I recommend you get some kind of job, even if it's volunteer work.  Go on Idealist or VolunteerMatch to find a labor of love devoted to a cause you can be passionate about.

     

    I have a friend who collects a government disability check and also works at part-time jobs.  As long as you don't go over the earned income limit, you can work and collect a government check.  I will talk in greater detail about this in a future SharePost.

     

    Parents: if your adult child cannot work at all, set up a Special Needs Trust so that you can pass income on to him or her after you die, without jeopardizing their ability to collect their government disability check money.  This is the first order of business if you suspect your son or daughter will have to rely on the kindness of the government the rest of their lives.

     

    My contention for the rest of us is that if you want to work you deserve to try to work at a job.  If it doesn't work out, you can always go back to collecting a disability check.

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    My friend works at the part-time jobs to boost his self-esteem so that he can feel good because he has something to do during the day.

     

    Investigate at what point your income will prevent you from receiving Medicaid. 

    I don't care if you're a Democrat or Republican, a liberal or conservative or apolitical, I still think it's a crying shame there is no universal healthcare in America.

     

    If everyone were granted free access to healthcare, more individuals diagnosed with disabilities might try to work because their drugs would be paid for and they'd have access to medical treatment.

     

    I'm going to end this SharePost with my ideas about housing options.  I posted a comment to my Recovery Stories: Christina Bruni SharePost last month about the horror hell of the apartment complex I lived in.  My take is this: I don't recommend residential or supportive housing unless it is the only option available to you.

     

    If you are a parent and your son or daughter lives at home, have them participate in the running of the household.  Refrain from acting like they're incapable of cooking dinner or doing laundry or shopping for groceries.

     

    Always: be hopeful that they can recover.  Give your son or daughter love and support always up until the day you're gone.  As soon as you need to, investigate the housing options that you will need to put in place for your adult child when you are no longer able to provide for him or her.

     

    Research and investigate with due diligence the residential or supportive housing options where you live.  Do a background check on the agency running the halfway house, group home or other type of residence.  Explore housing options now, rather than waiting.

     

    At some point, everyone diagnosed with schizophrenia will have to live alone or with a life partner instead of our parents.  Better to develop the resiliency and strength to live on our own as soon as possible.

     

    I feel I played by the rules when I was newly diagnosed.  As a result, I could've accepted the kind of life presented to me: collecting a meager $423 government check for the rest of my life and living in a drug-infested apartment complex where cockroaches crawled in the dresser drawers.

     

    If that is not the kind of life you want for yourself, if that is not the kind of life you want for your child, act now to line up other options.  Be not afraid to risk getting a job if you have a diagnosis of schizophrenia.

     

    I'll close out by stating that my approach to living for those of us newly diagnosed and our families might be a radical one.  The bottom line is to consider your options with great care.  A book I read stated that the average amount people collect in their government disability checks is something like $564 per month.

     

    As I said, a person's title or status in society doesn't impress me.  Yet whoever you are, you deserve to live your life well.  Today, circa 2012, there are more and better options for recovery than there were in 1987 when I was diagnosed.

     

    Comments?

Published On: October 13, 2012