growing uplollapalooza

What I Learned at Lollapalooza

Chrisa Hickey4 comments

Yesterday, I took Tim to his first concert.


I chose Day Three of Lollapalooza for a few reasons:

  1. It’s outdoors
  2. It has lots of different things to do other than watch bands, and lots of space to do them in
  3. The headliner was a band we both wanted to see
I was fearful, I admit it, and super-mega-hyper vigilant in my planning of the event.  Tim has an aversion to loud noises and big crowds, and I was purposefully taking him into a situation that had both.  It didn’t sound super logical.  But we did a lot of prep.  We made a plan to see only six acts in the 11 hours of the festival.  That gave us a lot of downtime to sit in the shade and explore other things.  We brought earplugs in case the noise was too much.  We talked a lot in the weeks before hand about the noise level and how many people would be there, so Tim wasn’t going in cold.  We created three rules that Tim memorized before we got there:
  1. Tim must stay with Mom at all times
  2. We aren’t in a hurry, so no need to get frantic. We take our time from place to place
  3. If Tim says he needs to leave, we leave, no questions asked
We took the train down to the city rather than have to deal with driving in.  On the way, I got a surprise text from Officer Julie, the most amazing CIT officer in the City of Chicago as well as the greatest friend a gal can have.  She picked Tim and me up at the train station and gave us an escort right to the front gates of Lollapalooza.


Tim felt like royalty.

We explored the grounds and had something to eat before we camped out at our first venue for the day.  Guards was the band, and after an initial shock at exactly HOW loud it would be, Tim bounced and bopped and danced along with the crowd when he felt like it, and sat down when he felt like it.

We watched two bands, then took another stroll, had some ice cream, and strolled back to the main stage (the one behind us in the picture above), and camped out on the lawn-covered hill on the right to see Tegan & Sara.   Officer Julie checked in by text a few times to be sure we didn’t need an escort back to the train, but Tim had been doing fine. Then, from our venue, Tim could see the masses stream in.  Yeah, it looked like this:

Lollapalooza 2013
He turned to me and said, “That’s….a lot of people.  I gotta go.”  So we did.  We walked other parts of the park.  We had some dinner.  And he wanted to go up to the alternate main stage to wait for Vampire Weekend to play.  I was a bit panicked because he wanted to go fairly close to the stage, and I knew the crowds would rush when the band started.  And they did.  From where we were, it looked like this:
2013 Crowd
And I was concerned he would freak out and we wouldn’t be able to get out.  Hell – I was freaking out. Drunk 20-somethings kept stepping on my feet.  I asked one drunk idiot to please not stomp on my feet again and I got a 3 minute swear-a-thon from him.  But Tim was in heaven.  He jumped up and down, clapped, sang along, and danced.  It was if the crowd didn’t exist.  After Vampire Weekend, we walked the entire length of the park to the headliner stage to see one of my all-time favorite bands, The Cure.  We found a spot not nearly as crowded, and again, he danced and sang the entire two hours.  At the end of the night, he and I walked hand-in-hand back to the train station so as not to get separated.  We stood in a massive jam at the train station waiting for the train, and again, he was fine.  He even shared gum with a young lady who asked if he had any to share.

As I lie in bed last night, exhausted, I realized I’d learned something about our new normal with Tim, since he’s been home from residential, and since he’s been stable.  First, Tim is no longer a child.  He really is a young man who acts like a  young man and can have some responsibilities like any young man should be able to have.  Second, Tim is able to process and manage experiences when he knows what to expect, and he wants to try them badly enough.  Third, Tim is super cool to hang out with.  I highly suggest taking Tim to a festival.  He’s kind, courteous, affectionate, and concerned for your well-being.  Plus, he’s kinda cute.


I will always be vigilant when it comes to Tim’s stability.  I guess I can do away with the hyper vigilant, however.  I need to let him grow up.  I’ll try.

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NBCstigma

Dear NBC Nightly News and Brian Williams

Chrisa Hickey7 comments

Dear Producers and Brian Williams:

 I am shocked and saddened that last night, Brian Williams said Ariel Castro is “the face of mental illness.” 

No, he most certainly isn’t.

Not only did a psychiatrist testify that he IS NOT mentally ill, but the horrific things he did are NOT a byproduct of any mental illness.

This is the face of mental illness.

This is my 19 year old son, Tim. Tim has Schizoaffective Disorder, which means he struggles with both Bipolar Disorder and Schizophrenia. Tim is like 94% of persons with severe mental illness. He follows his care regimen of medication and therapy. He’s trying to learn a job skill in an extended high school program. He participates in trainings of Chicago police officers and Child Protective Service workers to show what childhood onset mental illness looks like. 

And it very definitely DOES NOT look like Ariel Castro.

Sincerely,

Chrisa Hickey

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Uncategorized

Rehab Addict, Stigmatizer

Chrisa Hickey3 comments

This morning, the host of a show I love tweeted this:

Happiness is a choice. just putting that out as a reminder today.
— Nicole Curtis (@NCRehabAddict) July 19, 2013

And I died a little inside.

Because I’m sure she meant it as a way to lift people up.  Instead it tore me down.  And I’m sure it wounded every one of her followers that struggles with Depression.

Because it’s not a choice for them.  
For them, it’s a disease. 
This is the stigma of mental illness. 

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Uncategorized

Hospitalization How-To (When You Have To)

Chrisa Hickey4 comments

One of my kids was in the psychiatric hospital, or the “phosp” as we short hand it in the Facebook Support Group, last week.  It doesn’t matter which one.  Even though each of my kids with mental health concerns has, of course, their own distinctly different issues, the experience of being hospitalized, working on those issue, formulating a plan for aftercare, and discharge is generally the same.  At least for us parents.  Someone pointed out to me that, unbelievably, I’ve never written a post about what to do when your child is hospitalized.  As this is the 14th time I’ve had a child admitted to the phsop – not a badge of honor, I can assure you – I guess there’s no time like the present.


The Awareness

The first time Tim went inpatient, we were told by his therapist that it was necessary.  The next 10 times, we waited until he was a psychotic, raging, melting mess and we had to call police and paramedics to get him to go.  The last time (so far, knock wood) we decided that he was showing signs of decompensating to the point of being dangerous to himself / the rest of the family and worked with his doctor to check him in.  The first 11 stays were more than 20 days each.  The last was 4.  You might say that we’re slow learners ( you wouldn’t be the first), but we finally realized that waiting until he was a puddle of goo and beyond unhinged wasn’t healthy for him or anyone else in the house.  If you feel your child is decompensating, call your pdoc or therapist.  Start the discussion.  You know when it’s just an off day and when it’s becoming a trend.  That way you and your doctor can decide when a hospital stay can help stabilize your kiddo without having to wait until you find yourself, like I found myself, more than once, screaming, “That’s it! You’re going to the hospital!”

Getting There

There’s only three ways – you drive, the police drive, or an ambulance drives.  There are pluses and minuses to all three options.  Police can help calm an escalated situation and can call an ambulance for transport if that is what is needed to get your child to the hospital safely.  But it takes time.  The police have to come. They have to assess. Same with EMT.  And then there’s the extreme visibility to the neighborhood if police and/or an ambulance show up in your driveway which can distress you and your child later. But if it’s between you possibly getting brained in the car by flying objects or your child bailing out of a moving car or dealing with nosy neighbors later, please always opt for the choice that keeps everyone safe.

One additional note about calling the police.  Before you have a crisis, call your local police / sheriff non-emergency number and ask if they have  CIT trained officers or a mental health registry program.  If they do, register your phone number and address as the home of a person with a mental illness.  Then, if you must call for  help, you can tell the 911 operator, “I need a CIT trained officer, as I have a child in a mental health crisis.”  You will have a more positive experience with law enforcement and emergency personnel if you make plans in advance.              

The Wait

The vast majority of psychiatric admissions are through the ER, whether your child arrives by ambulance or you drive him/her there. ER staff are used to dealing with crisis, but most are woefully unprepared / untrained  to deal with a child in a psychiatric crisis. If you arrive by ambulance at least you’ll get a room right away.  If you walk into an ER, you will likely try and keep your kid from coming unglued in the waiting room for an hour or more before you even see a triage nurse.  And, as great as triage nurses are, they will likely  have a difficult time understanding why you are in an ER for a kid who’s having a “tantrum” or a “meltdown”.  Once you get into a room you wait for a psych consult.  And you wait. And wait. If you’re lucky, you can, again, keep your kid from becoming unglued.  If you’re unlucky – like happened to us once – your kid will scream and rage and spit and tell the staff that you’re trying to kill him, which will bring a social worker to see you WAY faster than it will bring the psych consult.

Once you get the psych consult, there’s only one reason they will consider admission for your kid.  He/she has to be an IMMEDIATE DANGER TO HIM/HERSELF AND/OR OTHERS.  Just because your kid is so manic that he hasn’t slept in a week and has broken every dish and door in the house isn’t good enough. Just because she talked about suicide in vague terms every day for the past two weeks isn’t good enough. The danger has to be imminent (just ask Adrienne).  Even if they do believe your child needs to be admitted, the wait continues while they try and find a bed.  Or another facility. Or somewhere other than the ER.  I’ve had the wait be three hours.  I’ve heard it taking as long as FOUR DAYS.  Yep – you read that right. I’ve had more than one mom tell me about being stuck in the ER, sitting next to her child for days waiting for a bed to become available, while the ER staff did nothing to help her son – didn’t even give him his regular meds.

If you have a good pdoc and he/she can get you a direct admit, all the better.  Then you can avoid the ER nightmare. Our psychiatric hospital has a walk in assessment team so we can skip the ER.  It’s a godsend.

The Admission

Once you get a bed, then there’s the paperwork.  Be prepared to fill out a complete medical history, including an assessment of your child’s current mental state.  Bring his/her current meds with you so you know the dosages.  Your child will likely have to answer questions about his/her mood as well, and as hard as it is to help our kids by answering for them when they are unstable, do your best to let your child answer. You might find out that your child is more aware of his/her symptoms than you realize.  I know I did.

They will ask you what method you prefer they use to subdue your child, should your child become a danger to him/herself or others while in the hospital.  The choices are usually these three:

  • Use of a quiet room / seclusion
  • Use of rescue medication (oral and/ or injectible)
  • Restraint by personnel, mechanical restraints, or both

I tell them that is my preference – that order.  They will tell you that they will make “best effort” to follow that, and make you sign a waiver that says you understand they can use any or all of them as they see fit, and you don’t really  have a choice.  But know this, and be sure THEY know you know this – they can’t give your child rescue meds or use restraint without telling you.  If you show up for a visit and your child tells you they got an injection or were in a hold, and they didn’t call to tell you, raise holy hell.  Call the case worker ASAP.

You will likely have to sign several releases for your child’s school, psychiatrist, pediatrician, and therapist to receive information about your child’s condition and status while in the hospital.  My rule of thumb is all info to the doctors is fine, but school only needs to know that your child is in the hospital so his or her IEP and schoolwork can be sent to the hospital.  They don’t need to know anything else.  HIPAA law aside, in my experience, schools are the least reliable at actually following privacy law.

You will get information on what your child is allowed to have and what he/she is not.  Draw strings in clothing, belts, shoe laces, under wire bras, spiral notebooks, or anything that can be used to self harm are generally not allowed.  Our hospital doesn’t allow stuffed animals or outside blankets either, which can be hard on younger children. Your child will be strip searched.  It will be traumatic for your child and for you.  You will get information on how to call your child and what the visiting hours are.  Some hospitals have strict phone and visitation times, some do not, so be sure you know before you leave.

In some states, if your child is over the age of 14, your child must consent to his or her admission.

Here’s a little known fact: Psychiatric hospitals are not allowed to change your child’s medication without getting your consent before they change it.

Be sure they give you a schedule of the program.  You should know what your child is doing.  Also be sure they give you a telephone number to your child’s caseworker.  Each child should have a care coordinator or case worker and you need to know how to contact him or her. Know the name of the doctor assigned to your child, and his or her office phone number.

During Inpatient

If you’ve ever had a child inpatient, you know that the one thing all psychiatric hospitals suck at is communication.

Don’t let them get away with it

Call your child’s case worker or care coordinator the day after admission and let him or her know your expectations as far as communication goes.  I expect a call daily. I ask if meds have been changed.  I ask if my child is participating in the program or is being allowed to sleep through it (which is a big warning sign that the hospital may not be so good at actually treating patients). I ask if my child has seen the psychiatrist, and when the first staffing is scheduled.  I ask to schedule the first family session, during that first call.  I ask the case worker’s hours because if I call my kid’s case worker and I don’t get a return call in two hours, I start calling every 30 minutes until I do get a call.  It’s amazing how well that little trick works.  Yes, I know I can be an annoying bitch when my child’s welfare is involved.  Tough noogies.

After the first staffing, I expect the case worker and the doctor to give me data, and lots of it, answering these types of questions:

  • What is my child’s working diagnosis? Is it different than a diagnosis he/she had before admission?
  • In what type of groups and/or therapy sessions is my child participating? General group therapy? Play therapy? Self-injury? What is the goal of the therapy sessions? 
  • Do you have any plans to adjust my child’s medication? Why?
  • Have you been in contact with my child’s primary psychiatrist? If not, why not? 
  • How is my child adjusting to the routine of the ward?
  • Has the school sent over my child’s schoolwork? Is my child working on it? If not, why not? 
  • Do you have thoughts about the aftercare plan we can discuss now?
Visitation and Calls
Tim always had a distinct pattern when it came to phone calls home and visits while inpatient.  The first day or two inpatient, he would call us, say three words, and hang up on us.  The first visitation time, he would refuse to see us.  I still think it was his way of showing us he was in charge of the situation, even if he was in the hospital.  So be prepared for your kid to be pissed off or out of sorts or not ready to talk to you right away, even if he/she knew inpatient was needed.  Admitting you need to be hospitalized is as demoralizing and scary and embarrassing for our kids as it is for us. Don’t take it personally, even if he’s screaming, “I  hate you!” at 120 decibels into the phone.  
On the flip side, try not to puddle when your child cries and wants to come home. They know how to tug our heart strings, and they’ll do it. They will beg.  They will promise to be better.  They will try and rationalize that they aren’t getting anything out of the program, or the program is stupid, or the staff are incompetent.  Be sympathetic but firm. If the program is sub-standard, you’ll know it. But unless the place isn’t safe or the program is horrid, there is no reason to take your kid out AMA.  Trust me – your insurance will take care of that soon enough.
Oh – speaking of getting your kid discharged AMA, be advised – most states have some law that allows the phosp to take anywhere from seven to fourteen days – not including weekends or holidays – to discharge a patient from a psychiatric hospital AMA.  Yeah, no joke.  Be sure you know what your state’s law is. I didn’t know and when I wanted to get Tim discharged once from a really, really horrible hospital, I was told it would take up to five days.  I sat outside the door to his ward for over five hours until they go tired of me sitting there staring at them through the door.  Sort of my own little protest.  
Discharge and After Care
Aftercare is by far the most important part of any inpatient hospitalization.  Sure – your child has been stabilized by a hospital stay, but often the stay is short because your insurance will only cover until your child is no longer in imminent danger, whatever that REALLY means. Your child will likely need follow up care. It can take one of many forms:

  • Partial hospitalization / day hospitalization: Very similar to the day portion of an inpatient program. Your child would be in the hospital school-type hours, and work on the same goals he/she had inpatient. 
  • Intensive outpatient: more like a condensed day hospitalization.  Typically this isn’t offered for kids, but could be an option for older teens. 
  • Residential treatment: If you child needs longer term treatment, residential may be recommended. Kids in residential typically aren’t acute (meaning, not in imminent danger) but are still far from stable.  Residential can be anywhere from three weeks to, in Tim’s case, three years. It depends on the severity of your child’s symptoms and the structure they require to work towards stabilization.
  • Individual therapy: In some cases, your child may be treated in a classical outpatient setting as follow up.  
In any of these cases, the after care plan should be agreed upon by you, the case manager, the treating psychiatrist, and your child’s primary psychiatrist if that doctor is different from the inpatient treating pdoc.  And, always, call your insurance company to be sure the after care plan is covered.  If it isn’t or you need help in getting after care services, call your county department of mental health services or the Federation of Families, who specialize in helping families of children with mental illness. 
I know that many of you are experts at this too. Please share your tips in the comments!

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congressdj jaffedr. fuller torreydr. xavier amadormarginalizationPete Earleystigma

Ignoring The Thin Line Between Stability And Psychosis

Chrisa Hickey2 comments

Back in March of this year, Congressman Tim Murphy, Republican of Pennsylvania, sponsored a hearing to the House Oversight and Investigations Subcommittee of the House Energy and Commerce Committee on violence and severe mental illness.   Many people were called to testify, including author Pete Earley, NIMH Director Dr. Thomas Insel, parents of persons with severe mental illness, and Dr. Fuller Torrey, founder of the Treatment Advocacy Center. Of the six questions Congressman Murphy posed to the panelists in preparation for their testimony, only one had to do with individuals with untreated severe mental illness.  The rest had to do with all persons with severe mental illness, including children.

After the hearing, I wrote an open letter to Congressman Murphy, asking him to include persons with severe mental illness on any subsequent panels:

Finally, I am gravely concerned that there was no mental health care consumer on the panel that testified yesterday. I am not sure how we can discuss what is in the best interest of the mentally ill without asking the opinion of persons with mental illness. Would a hearing about cancer rates be as valid if there were no cancer survivors testifying? Of course not. We talk about, as you stated, wanting to, “take mental illness out of the shadows,” but then do not invite the very persons we are trying to help. I have two teenagers, ages 17 and 18, who have severe mental illness and are stable. I have advocate for them in full view so as to teach them how to one day advocate for themselves. I cannot imagine deciding their treatment without their knowledge and input. I wish your subcommittee had given mental health care consumers that same respect, and heard their input on how they are treated by today’s mental health care and social services systems.

 Last week, a second hearing was held before the same subcommittee about SAMSHA and its role in servicing the severely mentally ill.  And while Dr. Torrey spoke again, not a single person with a severe mental illness was invited to testify.

If you are a person or you love a person with a severe mental illness – and let’s be clear, we are talking about  Bipolar Disorder, Schizophrenia, and Schizoaffective Disorder – this should enrage you.  What Congressman Murphy and Dr. Fuller Torrey are stating is that you don’t have the right, nor do you deserve to be heard about what it is like to get treatment and services if you have a severe mental illness.  That you don’t have enough control of your faculties to have any coherent or useful input.  That out of at least three million people in this country, none have anything valuable to contribute to the conversation.

There are plenty of folks in this discussion that feel this way.  DJ Jaffe, Dr. Fuller Torrey, and Dr. Xavier Amador are the de facto ring leaders among them.  They feel – and state, quite publicly – that if you are even remotely close to stable, your opinion isn’t valuable.  They need to speak for every severely mentally ill person.  After all, DJ Jaffe said directly to me, we don’t have Alzheimer’s Patients or the Developmentally Disabled testify before Congress!

Um… DJ? Yes, we do:

http://www.aging.senate.gov/hearing_detail.cfm?id=341499&

http://blogs.app.com/capitolquickies/2013/03/05/developmental-disabilities-an-early-focus-of-budget-hearing/

But Jaffe, Torrey, and Amador want us to forget that.

Forget about the fact that it takes an act of God to find a psychiatrist that 1) takes your insurance or Medicare, 2) is accepting new patients, and 3) is even remotely close to where you live, and when you find him or her, the wait to get an appointment is, on average, eight weeks.

Forget about the fact that supported housing is scarce, the waiting lists are enormous, and cities all over the country fight having them anywhere near their neighborhoods because you are all so dangerous.

Forget about the fact that you can’t find a job because more than 50% of you dropped out of high school, and supported employment programs are as rare as supported housing.

Forget about the fact that you can only get inpatient treatment after proving you are already a danger.

Forget about the fact that the easiest place to get housing and treatment is in prison.

None of that matters because you were, on some level, well enough at one time to try and get yourself some help.

Know who else was well enough, at one time, to try and get help?  These guys:

There’s a thin line between when a person with a severe mental illness is stable, and when he or she is not. Maybe we should hear from them about the pitiful state of mental healthcare in this country before more end up crossing it.

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exhaustionguardianshiphomeICGIEPmentoring

Trying To Re-Integrate

Chrisa Hickey3 comments

Man, what a month.  Six weeks, actually.

Tim is home, for good, but we had him discharged from his RTC so fast that we didn’t have time to make any transition plans for school / doctors / therapy that weren’t part of the RTC.  I really wouldn’t recommend doing it that way.  We had a good reason.  Without getting into all the hairy details, a few incidents happened that proved that the RTC couldn’t keep Tim safe and we absolutely would not let him stay there one second longer.  They tried to talk us into keeping him there, but there was no freaking way that was going to happen.  I insisted they call the local police to have an investigation done.  I can’t believe DCFS hasn’t investigated (or maybe they have and I’m just not aware of it).  In any case, it is clear they don’t have near enough safeguards on clients that are over 18.  Just because Tim is 18 doesn’t mean he is as mature as an 18 year old.  He’s about as mature as a 10 year old.  They knew that.  They just don’t have to put as much effort into safeguarding him from other clients over 18 that are more mature because they are all over 18.  And that pisses me off, to a large extent.  My kid paid the price for me assuming they would do the right thing, simply because they did when he was under 18. What the hell is so magical about turning 18?

In the past six weeks we’ve:

  • Had the basement flood 
  • Begged and pleaded for an IEP meeting for a new placement
  • Visited the day placement the school recommends (and we approved today)
  • Made an appointment for a new pdoc (first appointment is this week)
  • Begged the pdoc from the RTC for enough med scripts to hold us over until we could get an appointment with a new pdoc
  • Had an interview with the guy who runs the in-home mentoring program Tim qualifies for
  • Set goals for in-home mentoring
  • Made calls to see when we could get in-home mentoring to start
  • Run through 3,000,000,000 gallons of gas in the riding lawn mower, as Tim “helps out” by driving laps around the house, by driving his siblings in the trailer behind the riding lawn mower around the neighborhood, and by generally impersonating Alvin Straight
  • Filled out a ton of paperwork for our regional special recreation district summer session
  • Gotten Tim on Facebook (don’t say you weren’t warned)
  • Spent “quality time” at the Social Security Administration office
  • Had the first court date to get plenary guardianship of Tim
  • Gotten Tim a bank account
  • Made 436,327 follow up calls
  • Raised $3,115 in sponsorships for  NAMIWalks Milwaukee and BringChange2Mind
All this, and we still can’t find a neurologist that will give him an EEG.  It is nice having the whole brood home though.  Well, except Wonderboy, who’s living on his own now, but he comes over, once in a while.

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changeshometransition

Ch-ch-changes…..

Chrisa Hickey2 comments

I could swear I’ve titled a post with this title before.

Anyways…..

Just a brief update as to why I’ve been so quiet.   Tim is home.  Permanently.  For many reasons, we had him discharged from his RTC last week, without all the planning and setup that would normally go into transitioning from RTC back to home.

So now we are scrambling to get services, get SSI sent to the correct address, get an IEP meeting set up for school placement, get into a new psychiatrist   All while The Girl and The Bonus Kid adjust to having him around 24/7.  And we adjust, all while Tim honeymoons as he’s not in class or in therapy right now.

I have a feeling I’ll have a lot to blog about really soon.

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anosognosiachoicesdj jaffedr. fuller torreyfearschizophreniatreatment

Fear and Misinformation and Throwing Away 50%

Chrisa Hickey10 comments

DJ Jaffe and Dr. Fuller Torrey are two leading figures in the cause for forced treatment of persons with severe mental illness. Their argument is that persons with schizophrenia, schizoaffective disorder, and severe bipolar disorder lack the ability to contribute to their care.

While in many cases, that is true, in equally as many cases – by their own admission – it is not.

But that hasn’t stopped them from spewing fear rhetoric to any media outlet that will listen, in order to further the cause for the 50% who truly do need better access to care, a higher level of care, and even involuntary care for their own well-being.

By fanning the fire of half-truths of persons with severe mental illness through an agenda of fear, DJ Jaffe and Dr. Fuller Torrey are doing a huge disservice to the 50% of persons with severe mental illness they couldn’t care less about – the ones that do have insight, that do contribute to their treatment, and do function in society.  And that is very, very dangerous for that 50%.

Here is why DJ Jaffe and Dr. Fuller Torrey dangerous.

Mr. Jaffe quotes – and violently agrees with – Congressman Tim Murphy, about the congressional subcommittee hearing on violence and mental illness held two weeks ago:

This panel is about mental illness and violence, and I am not gonna pull a convicted felon out of jail to talk about why they killed someone. I’m just not gonna do it. … As a psychologist I have an obligation to do no harm. And I am not gonna put someone with mental illness on just to put them on parade. And someone with serious mental illness or schizophrenia or psychotic disorder (this pressure) can set them off.

FACT: One of my family members with Schizoaffective Disorder was approached to possibly testify at the hearing.  Another adult was also approached to possibly testify.  Both were ready and willing to discuss the state of mental health care in America.  But Congressman Murphy didn’t want any consumers on the panel, period.  Murphy -and Jaffe, by extension – perpetuate the fear mongering that persons with schizophrenia are to be feared because they are dangerous.

In this article Mr. Jaffe writes:

But what about the others? The effect of Mental Illness Awareness Week is to divert attention away from the 3%-5% of Americans who are the most seriously mentally ill–like those suffering from schizophrenia or treatment-resistant bipolar disorder, the very mentally ill people who are not “like you and me” and need our help the most.

FACT: I think many persons with schizophrenia who are  aware of their illness and symptoms would disagree – they would say they ARE like us, they DO face stigma, and that they CAN and DO participate in their own care. People like Elyn Saks, John Nash, Meera Popkin, Tom Harrell.

On his Treatment Advocacy Center website, Mr. Jaffe asserts:

Schizophrenia interferes with a person’s ability to think clearly, manage emotions, make decisions, and relate to others.

FACT: When psychotic? Yes.  Absolutely.  But can a person experiencing positive and/or negative symptoms still relate to others?  Still make decisions about their care? Still think clearly enough to contribute to their care? Yes. Absolutely.  Schizophrenia is linear.  The appearance and severity of symptoms is not.

Here, Dr. Fuller Torrey insinuates that if Connecticut had stronger AOT laws, Newtown might not have happened:

While it isn’t yet known whether Lanza was being treated, it is known that Connecticut is among the worst states to seek such treatment. It has among the weakest involuntary treatment laws and is one of only six states that doesn’t have a law permitting court-ordered “assisted outpatient treatment.” In study after study, AOT has been shown to decrease re-hospitalizations, incarcerations and, most importantly, episodes of violence among severely mentally ill individuals.

FACT: AOT laws would NEVER have stopped Adam Lanza, because the basic tenet of AOT law is that one must be, at minimum, arrested for a crime before the AOT statute kicks in.  Just more fear mongering, with half-truths.

So, Mr. Jaffe, Dr. Torrey, you are guilty of exactly what you preach.  You disregard 50% of persons with severe mental illness.  They aren’t allowed in your conversation. Unless you start thinking holistically about how we need to service and support 100% of persons with severe mental illness, you will never be able to move the 50% you advocate for into the 50% you disregard.  And, after all, isn’t that the point?

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AuroraJames Holmesmental health parityparents

Not Guilty

Chrisa Hickey6 comments

I knew better, but I read the comments anyway.

“He needs the death penalty immediately!”
“Bring back public hanging!”
“Electric chair sounds nice, live on paperview.” (sic)
“Cut his balls off and feed them to him.”

I wish he had pled Not Guilty by Reason of Insanity so the public could see what a joke our mental health care system is in this country.

This is a man who went for help.

He didn’t get it.

We are ALL guilty.

My thoughts are with Robert and Arlene Holmes today, as well as the victims.  They lost their son that night in Aurora, too.

(AP / Ed Andrieski)

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