The Mindstorm

Trying To Re-Integrate

2013-05-13T13:06:00.000-05:00

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.

Ch-ch-changes.....

2013-04-10T12:58:00.003-05:00

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.

Fear and Misinformation and Throwing Away 50%

2013-03-19T11:26:00.004-05:00

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?

Not Guilty

2013-03-12T13:09:00.000-05:00

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)

Congressional Hearing on Violence & Mental Illness - My Open Letter to Congressman Murphy

2013-03-06T11:47:00.000-06:00

March 6, 2013
Representative Tim Murphy
Fax: (202) 225-1844

Dear Congressman Murphy:

My name is Chrisa Hickey and I am a parent of four young adults, two of which are diagnosed with Schizoaffective Disorder. I write a blog about Childhood Onset Mental Illness and moderate a support group of over 600 parents of children diagnosed with all types of mental illness. I was made aware of yesterday’s subcommittee hearing on violence and mental illness by my friend Pete Earley. I was able to watch the first portion of the hearing on C-SPAN, and will be able to complete watching it this evening. I wanted to thank you for holding this hearing and for your remarks in your opening statement. I do have three concerns regarding the hearing, however, that I wanted to bring to your attention.

In your opening statement, you state that you were there to, “listen and learn from those who have lived lives of fear, frustration, love and compassion: the families of t hose with children who have violent mental disorders.” My first concern is that, in your opening sentences, you link violence and mental illness, even though further into your remarks you accurately state that persons with mental illness are far more likely to become the victims of violent crime than the perpetrators. You also failed to mention that persons with mental illness are far more likely to exhibit violence when they are under the influence of drugs and/or alcohol, and that persons with substance abuse issues and no diagnosis of mental illness have rates of violence at the same level as substance abusers with a mental health diagnosis. As I stated above, I have yet to view the entire hearing, but I am concerned that there was no discussion of substance abuse and its link to violence.

My second concern is that, as you stated, the subcommittee was there to hear from parents struggling to get help for their children with mental illness, yet when you invoke the Newtown tragedy, you failed to mention Nancy Lanza as one of the victims. Most persons with mental illness who act violently do so towards a close friend or family member, not towards strangers. But when we talk about Newtown, we scapegoat the very person we as a society failed – Adam’s mother. There have been numerous reports from her friends and family that she was trying to get help for her son, but ran into the roadblock so many of us parents face, namely, that until he demonstrated he was a threat to himself or others, there was nothing that could be done. If we are to remove the stigma of being the parent of a child with a severe mental illness – and believe me, that stigma is enormous – we need to recognize there were 27 tragic deaths last December, not 26.

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.

Again, thank you for holding this hearing. It is encouraging to see our representatives in Washington, D.C. begin to hear about the experience of how difficult it is to help a family member with mental illness. I hope you will consider my suggestions for any future investigation this or any other committee has on the state of mental health care in the United States.

Regards,
Chrisa Hickey

Join Me In Hell

2013-02-23T17:28:00.001-06:00

Everyone has those movies that, no matter what time they come on TV or what you're doing when they come on, you'll stop everything to watch them. One of mine, What Dreams May Come, was on cable today.

JDonathan.com

I won't bore you with a lengthy synopsis, but it's about Chris and Annie, a pediatrician and an artist who meet and are instantly attracted to each other. They fall in love, marry, and have two children. Life seems perfect when both their middle school-aged children die in a car accident. Annie cannot bear the grief and has a mental health crisis, followed by a long hospitalization. She threatens divorce, but Chris and Annie reconcile and Chris works hard to keep her depression at bay. On the anniversary of their deciding not to divorce, Chris, on his way home to the celebration, dies in a car accident of his own. He ends up crossing to "heaven" which is highly personal, created by his own mind. Chris' heaven looks like a painting Annie had done that captures their courtship and dreams for each other. He is re-introduced to his children, who have created worlds of their own. Annie, who is reeling from the loss of now her entire family, continues to paint their picture, and Chris can see it in his heaven. This is a sign they are true soul mates, according to their son.

Annie, unable to bear the grief of her tremendous loss, takes her life. When Chris learns of this he is at first glad, assuming this is an end to her pain. But he is distraught when he learns that persons who die by suicide end up in "hell" - technically, a hell of their own making, since the afterlife they create for themselves carries the pain of their lives. Chris cannot bear Annie living forever in her pain, and sets out through hell to find her and bring her to his heaven. His mentor in life, acting as his guide, leads him through a maze of destruction and tortured souls that would make Dante proud. Chris finds Annie and attempts to break her free from her own mind. He talks to her about her sorrow in life and how he kept trying to pull her free from it. He begins to feel the pain she feels and starts to lose his own mind, closing his eyes in confusion. When he opens them, he is back in his heaven, with Annie who is free and can stay with him and their children until they are reincarnated to find each other again on earth.

I'm drawn to this movie for three reasons. First, it is visually stunning. Annie's paintings come to life in Chris' heaven first in actual paint, then in one of the richest, most detailed sets I've ever seen in any film. The trip through hell begins literally with a sea of pale, naked, tortured souls, capsizing ships that attempt to cross it, followed by an endless desolate field of persons buried up to their necks. It ends, finally, in what appears to be Chris and Annie's house in life, charred, broken, and flooded. The emotions are palpable in each and every scene. Second, the acting is compelling. Robin Williams and Annabella Sciorra's performances are gut wrenching and emotionally raw. In my mind, this is easily Sciorra's best performance. As a woman tortured with guilt over the deaths of her children, then desperately trying to hold on to a reason to live after losing her husband, she manages to show the agonizing, expressionless existence of someone in a serious and dangerous Depression without becoming pathetic and stereotypical. Finally, the way Chris brought Annie out of hell resonates with me. After the death of their children, and again when he finds her in hell, Chris tries desperately to pull Annie out of her seemingly bottomless well of pain. Finally, sitting at her feet in the ruins of the chaos she's created, Chris decides that if he can't get her to heaven, he'd join her for eternity in hell, even if it means surrendering his own mind to her pain. When he opens his eyes and he is back in his heaven, Annie at his side, he asks her how it happened, particularly since he tried so hard during their lives and in her hell to pull her out. She states, very simply, that she was unable to break free until he stopped trying to free her and tried joining her.

I often think of Annie's simple response when trying to explain to others when and how Tim finally achieved stability, and how we have learned to separate the illness from the person. We spent so many years of Tim's childhood trying to name the pain, and medicate the pain, and psychoanalyze the pain, that we didn't take time to empathize with it. When we stopped fighting against the storm of rage and emotion and depression and psychosis and really stepped back and tried to understand what it was like inside of Tim's head, we finally realized that the broken doors and pacing and beating of heads against walls were the attempt to dull the screaming, frantic whirlwind of fear and confusion and anguish. I also think that my own struggle with depression and anxiety, inflamed by the constant vigilance of the fight against Tim's symptoms, helped me realize that the outward expressions that seemed to have no purpose served, in a very tangible way, to externalize the hurt. Every broken door was an outward expression of anxiety. Every mile spent pacing matched the speed and intensity of racing thoughts. The inability to get out of bed mirrored the weight of depression. When I gave up the fight, I felt better, and he felt better. By joining him, I think I freed us both.

Value Options is Neither: No is Not The Right Answer - Guest Post

2013-02-08T10:50:00.000-06:00

Imagine for a moment, you are in the middle of a serious crisis with your child, who has been fighting a potentially life threatening illness for several months; you are doing everything you can to keep it together and ensure that they are getting the best care available. There are multiple hospitalizations, treatment team meetings, deep despair and silver linings. One particular day, you meet with the doctor and treatment team and you’re being told that your child is nowhere near ready for discharge; medications are still being adjusted and symptoms are getting progressively worse in the mean time. The following day, you receive a call from the attending nurse who wants to discuss discharge, even though everyone is aware that if the child goes home, he will likely die. Can you even imagine this happening?

Believe it or not, this is a true story. And the discharge wasn’t being pushed because my son had a miraculous healing overnight, in fact quite the opposite. Even as the discharge was being discussed, he was having a number of major incidents that were indicative of his need for further treatment. After questioning the nurse for a few minutes about how this could be possible, it was acknowledged that the insurance company was questioning the need for further treatment and the hospital was concerned that they would not be paid if they kept my son any longer. The decision was not being made based on the health and welfare of my child but based on the experience this hospital had with the managed care provider hired by the insurance company fueling their fear that they wouldn’t continue to get paid. This managed care company is Value Options.

Let me take a few steps back. Just after my son’s 16th birthday in 2010, he had a serious mental health crisis. It was, at the time, a potentially life-threatening illness and in fact just prior to this particular hospitalization, he attempted suicide. At the time he was admitted to this hospital (the 5th of his crisis) he also had a letter from his psychologist stating that without long-term hospitalization, he would most likely end up dead.

This incident wasn’t the first time that Value Options had come up in conversation with treatment teams and attending staff during my son’s various placements. In fact, many times the first comments from the team were that they were not sure how long Value Options would allow my son to remain hospitalized. I guess at the time I was pretty naïve because I would respond that it didn’t matter whether or not the Value Options would cover him, he would not be discharged until it was medically clear that he was safe and ready to go home.

What I didn’t realize at the time was that Value Options has a reputation for being difficult to deal with. I found this out first hand, when my son was about to be discharged from the hospital and was clearly not ready. I was given the name of the contact at Value Options and I called. It was then that I found out I had a case manager assigned and that her job was to track my son’s treatment and raise the flag if she felt that treatment was no longer required. This case manager reported to a doctor, both sat in an office 1000 miles away from where my son was being treated. I was told that the Value Options doctor would be meeting with my son’s treating physician the following day and a decision would be made regarding his discharge. I was also informed that the Value Options doctor had the final say as to whether or not further treatment was necessary. While this discussion regarding my son’s discharge was occurring, his treatment team was trying to stabilize him on several medications, which required daily blood work to assess the level of medication in his body, and yet, Value Options was pushing for discharge.

I launched my own personal campaign to keep my son in the hospital; I engaged my HR organization that manages the relationship between my company and Value Options. I wrote letters to the hospital’s attending physician, the treatment team, the Vice President of Psychiatric Care, the Vice President of Client Services and included a whole package documenting my son’s history and treatment up to that point. I also included the letter from my son’s psychiatrist. If they were going to discharge my son before he was ready to safely go home, I was going to put them all on notice that their discharge decision went against all of the information that had been provided on his progress to date.

I was successful in securing additional time for my son during that hospitalization, but Value Options required a move to a Residential Treatment Facility for continued funding. Value Options found a placement at a facility that was not in the same state that we lived in, but they had beds available. My son was transported nearly 1000 miles to go through a 30-day diagnostic assessment.

When my son was first admitted into the Residential facility, I was told by Value Options that at some point they would stop covering my son’s residential placement and that I would need to look at state provided Medicaid. I was also told that I was “lucky” because in the past Value Options didn’t pay for any residential treatment at all. Lucky? That wasn’t the word I was thinking of while I was going through this process. What I wasn’t told at the time was that because my son was in treatment in a different state than where we lived, we wouldn’t qualify for Medicaid in that state.

When the assessment was complete, the treatment team reported that they did not feel that my son was safe to go home and felt further residential placement was necessary. The Value Options case manager participated in the assessment review and stated that Value Options would not cover further funding for my son to remain at that facility and we needed to move him (again) to a facility in our state so that we could apply for Medicaid. Value Options agreed to continue to cover my son until a placement was made.

I immediately engaged my County’s Office of Mental Health to obtain placement approval and Medicaid authorization for my son to move to a facility close to our home. This process was very lengthy and required jumping through a number of hoops. I was told that it usually took 45 -60 days to secure placement. Panic hit me when I found out that the board that approves the incoming residential placements only met once per month. I had already missed the deadline for the approval, however if I pulled the package together, the contact I was working with at the Office of Mental Health would try to get the board to consider the placement. I was able to get the placement approved, met with the new facility and scheduled a date to move my son (and all within 20 days).

The very same day that my son was accepted into the new facility I received a call from my Value Options case manager, letting me know that my son’s care had been terminated 3 days prior. I was 7 days from moving him and having Medicaid pick up the cost of care and Value Options dropped my son and didn’t bother to inform me for 3 days. The decision for the dropped coverage was made by the Value Options doctor, who in a conversation with the Residential Facility’s doctor, was told that my son had not gotten worse and therefore it was determined that he “no longer required residential care”. Even though we were moving him to another residential facility under the recommendation of the attending doctor and treatment team!

Again, I launched a full court campaign engaging my HR organization, the Sr. Vice President of HR, the residential facility, and the Office of Mental Health. I was able to successfully get Value Options to change their coverage decision and they agreed to provide funding for my son through the move date.

While my son has had treatment since this experience, I am happy to report that he has transitioned home and is making great progress. But I am concerned that should he require treatment again, we will find ourselves back dealing with the same Value Options process which puts profit before patients. Honestly, I cannot imagine how things might have turned out for us had I not been able to engage the proper resources and fight tooth and nail for the coverage that I was paying for. In the middle of one of the worst experiences of my life, caring for my ill child, I had to somehow find the strength to stand up and fight for his care and let them know that NO is not the right answer.

Amy White is a mom, mental health blogger and advocate who has been supporting a child through mental illness crisis and the system of facilities, programs, processes, private insurance and public assistance for more than 2 years. Amy uses her own experiences to support other caregivers who are going through similar situations and challenges through her blog, online advocacy and in person support. Her blog is Far From Paradise and you can follow her on twitter .

Childhood Mental Illness - Thanks Ricki Lake!

2013-02-06T15:58:00.001-06:00

I want to give a big thanks to The Ricki Lake Show, Ricki, Rebecca, her producer, and the rest of the Ricki Lake staff for the amazing show today. Thanks for portraying our kids as kids that need support, not monsters, not stereotypes.

If you found The Mindstorm after watching the show, we have a club for Parents Like Us. It's called - of course - The Parents Like Us Club. Come read stories of other families raising children with severe mental illnesses and share your story. Your story could be the one that helps another parent feel less alone.

Value Options is Neither - And A Judge Agrees

2013-02-05T11:44:00.000-06:00

I'm going to post this without commentary.

Ok, one thing.

Value Options, your days of taking our tax dollars to deny children services are numbered.

Any emphasis is mine.

P.G. BY AND THROUGH HIS MOTHER, ) K.G., AND S.K. BY AND THROUGH HIS ) MOTHER, A.K. ) ) PLAINTIFFS, )

VS. ) ) JULIE HAMOS, IN HER OFFICIAL ) NO. 13-3020 AS DIRECTOR OF THE ILLINOIS DEPARTMENT ) OF HEALTHCARE AND FAMILY SERVICES; ) MICHELLE R.B. SADDLER, IN HER OFFICIAL ) CAPACITY AS SECRETARY OF THE DEPARTMENT ) OF HUMAN SERVICES; AND THE ILLINOIS ) MENTAL HEALTH COLLABORATIVE FOR ) ACCESS AND CHOICE, ) ) DEFENDANTS. )

We call your attention to this January 31, 2013 decision granting a TRO against defendants in the United States District Court for the Central District of Illinois.

FACTS

This was a suit alleging violation of the Medicaid early and periodic screening, diagnostic and treatment (“EPSDT”) provisions. The “Collaborative,” as you may know, is operated by Value Options, Inc. (“VO”) to provide managerial oversight to the Individual Care Grant program. When VO first took over and created the Collaborative, we predicted that the number of ICG applications actually granted would fall dramatically. At the time VO came onboard, there were approximately four hundred ICGs.

Now, there are less than 140 and the number actually granted during 2012 was only thirteen. VO has steadily received increasing fees in the millions while more mentally ill children go without services.

The lawsuit involved the Collaborative discontinuing funding for P.G.’s placement at Kemmerer Village, which is a residential facility. In addition, another minor, S.K., was also involved and was in the hospital as described below. P.G. is a sixteen year old Medicaid eligible boy who is psychotic, challenged by Reactive Attachment Disorder, as well as Oppositional Defiant Disorder, and has been hospitalized numerous times. He was accepted into the ICG program in July 2011, which is partially Medicaid funded. The Collaborative, but not Value Options, was sued because they run the ICG program. In August of 2011, P.G. was placed by ICG, but the Collaborative was planning to terminate his funding at Kemmerer Village on January 31, 2013, the day of the court’s ALERT 2 decision. The court observed that if this occurs, P.G. would be discharged from Kemmerer Village. The complaint further stated that if discharge occurred, P.G. would be at risk for further hospitalization and institutionalization. He would also be unable to attend school while he is hospitalized or institutionalized, and he has not successfully responded to outpatient services previously made available.

Essentially, the allegations claim that a discharge, ostensibly because residential placement is no longer “medically necessary,” violates Medicaid law and further residential placement is, in fact, medically necessary and appropriate.

A.K. is an eleven year old boy suffering from Mood Disorder; Anxiety Disorder; ADHD; Oppositional Defiant Disorder; Learning Disorders; and Reactive Attachment Disorder. He is currently hospitalized at the Methodist Medical Center in Peoria, Illinois, which is a psychiatric hospital. On January 22, 2013 the attending psychiatrist recommended that A.K. receive residential treatment. Moreover, according to the complaint, if A.K. does not receive residential mental health services, he will be at risk for further hospitalization. When he is in the hospital, he is unable to attend school or leave the hospital. Furthermore, outpatient services were unsuccessful in maintaining a sufficiently supervised therapeutic setting for this child.

The complaint states very clearly that both of the plaintiffs need a residential setting for maximum reduction of their mental disability and for restoration to the best possible functional level because sufficient intensive home and community based services have not been made available to them (or been successful).

The plaintiffs seek a temporary restraining order (“TRO”) while the case pends in order to continue funding for P.G. at Kemmerer Village, and in order to provide A.K. with an appropriate psychiatric residential facility. Essentially, qualified personnel have recommended residential mental health treatment for the two young plaintiffs and the Collaborative has ignored these recommendations. The complaint essentially takes the position that psychiatric residential care is medically necessary and to deny it for both children would violate EPSDT provisions of Medicaid. The law mandates that EPSDT services for all persons under age twenty-one must be provided by states accepting Medicaid, which Illinois does. See 42 USC 1396d(a)(4)B. Moreover, psychiatric residential treatment services have been held to be included in the EPSDT rubric. See Collins v. Hamilton, 349 F. 3d371, 374-5(7th Cir. 2003).

COURT’S ANALYSIS

The plaintiffs were requesting a TRO to enjoin defendants from failing to take immediate and affirmative steps to arrange and fund the plaintiffs’ medically necessary residential treatment as required by the EPSDT provisions. The court held that the plaintiffs have shown that they are reasonably likely to succeed on the merits of the case, that no adequate remedy at law exists, and that plaintiffs will likely suffer irreparable harm if the TRO is not entered. Moreover, the harm that the plaintiffs will suffer clearly outweighs the harm defendants might suffer if the injunction is granted.

Since Medicaid is a cooperative federal-state program that provides federal funding for state medical services for the poor, if states decide to participate, they must comply with all federal requirements. One requirement is that every participating state have “early and periodic screening, diagnostic, and treatment services,” for persons under twenty-one. The 7th Circuit Appellate Court has interpreted the Medicaid Act to mean that placement in a psychiatric residential treatment facility, where such placement is determined to be medically necessarily through EPSDT screening, is included “within the ambit of covered EPSDT services.” See Collins v. Hamilton. The Collins court was an Indiana case claiming the State of Indiana failed to provide Medicaid eligible children under the age of twenty-one with psychiatric residential treatment facility placements in similar circumstances. The Collins court noted that states are required to provide appropriate psychiatric residential care as a part of EPSDT. In fact, the Collins court stated that “inpatient psychiatric hospital services for individuals under age twenty-one” are coverable Medicaid expenses so long as they abide by the directions of subsection (h) of the Medicaid law. This language, the Collins court found, broadened the definition of inpatient psychiatric hospitals to include services rendered in psychiatric residential treatment facilities (“PRTFs”) by expressly incorporating other inpatient settings as specified by the secretary in regulations. Such regulations were accordingly promulgated to specifically include psychiatric residential treatment facilities as possible venues for patients under the age of twenty-one to receive medically necessary and restrictive psychiatric treatment.

THE COURT’S ORDERS

The federal judge granted the defendant’s motion for TRO and ordered defendants (under pain of contempt) to take affirmative steps to arrange and fund the plaintiffs’ medically necessary treatment as required by the EPSDT provisions of the Medicaid Act, including maintaining P.G.’s placement at Kemmerer Village and in addition, maintaining A.K.’s placement at Methodist Medical Center while continuing to seek an appropriate residential facility and fund same.

It should be noted that the Central District (Springfield), Judge Myerscough, U.S. District Judge, has scheduled a hearing for February 15, 2013 at 10:00 a.m. for entry of a permanent injunction against the practices of the collaborative and its co-defendants.

This case should be monitored closely. There is some discussion that the EPSDT issue may eventually reach class action status in light of the rampant ICG denials last year.

Courtesy of: Whitted, Cleary + Takiff LLC 3000 Dundee Road, Suite 303 Northbrook, Illinois 60062 (847) 564-8662 Fax: (847) 564-8419 www.wct-law.com

Value Options is Neither : Making a Fortune Killing the Individual Grant Program

2013-02-02T08:00:00.000-06:00

I know a lot about how Value Options does business because the State of Illinois Department of Mental Health began contracting with Value Options in 2007 to manage the Individual Care Grant program. The Individual Care Grant, or ICG, is a program, became law in Illinois in the 1970's, and was revised to this current code in 1999. It's regulations are listed under Administrative Code 59, part 135. It's purpose, as written into the code, is:

This Part is intended to define the terms under which children are eligible to receive funds for residential placement due to their mental illness, including alternative in-home/community services in lieu of residential placement, when clinically appropriate. Funds are provided to assist parents/guardians in obtaining such services at the appropriate level of care. Among the Part requirements are two primary mandates to be satisfied so that the grant can be approved for renewal on an annual basis.

The emphasis is mine. Those are two important points.

The requirements that must be met to qualify for an ICG are stringent:

a) Parent/guardian must be a resident of the State of Illinois.

b)         The child must have a severe mental illness. A severe mental illness is defined as a mental or emotional disorder which substantially impairs thought, perception of reality, emotional process, judgment, behavior, or ability to cope with the ordinary demands of several life domains. Symptoms must include severely impaired reality testing and may include hallucinations, delusions, avoidance or withdrawal from human contact, marked effective instability, apathy, bizarre behavior, deficient or unusual forms of communication, agitation and/or danger to self or others. The course of the illness should indicate that the symptoms do not represent an acute episode from which rapid and substantial remission is likely.

c)         There has been an appropriate trial of inpatient, outpatient and/or community-based treatment efforts, and subsequently residential services are required.

d)         The child must not be under the guardianship of a State agency, or in the legal custody of a State agency.

e)         The child must be enrolled in an approved educational program at the elementary/high school level.

f)         A completed application package in accordance with Section 135.40 of this Part must be submitted before the child attains the age of 17 years and six months.

And Tim is as typical a child approved for an ICG as any other child who applies. I don't have exact numbers, but there are roughly 265 children in the State of Illinois that have an ICG in place. Roughly half are in residential treatment and half are in community-based treatment. 265 may sound like a lot, but of the 3.2 million children in Illinois, that's just 0.00008% of them. That's just the most severely ill. But that's not all of them.

From 1995 to 2006, before Value Options took over the management of the application review and approval process, as well as the annual renewal process for ICGs awarded, there were an average of 205 applications for ICGs every year, with an average 38.5% approval rate.

Since Value Options took over the process, there have been an average of 273 applications annually, with an average approval rate of 18%. Let's see that graphically:

Source: ICG Annual Report

It's important to note that the applications numbers by year are just the ones that are reviewed. Oh yes, there are a whole bunch of applications that are rejected for being "incomplete" - there is not definition or explanation of what "incomplete" means. There aren't any statistics before 2011, but in the two years where statistics are available, the percentage of applications that weren't even reviewed were 36% and 44%.

It might also interest you to know that the average annual cost of the program has risen 15% since Value Options took over management of the ICG program. Maybe that's because Value Options makes over $8 Million a year denying children that desperately need the program.

This may seem like a lot of numbers and figures to you, and statistics are boring. But these are our childrens' lives. These are kids that might have a chance to stay out of repeated hospital stays, homelessness, or prison because they had the care to get to stability in childhood.

* All information received via a Freedom of Information Act request

Value Options is Neither - An Open Letter to Tom Warburton, Vice President of Corporate Communications, Value Options, Inc.

2013-01-31T15:12:00.000-06:00

Perhaps you read about Pickles, the eight-year-old girl with Schizoaffective Disorder that Value Options is trying to have removed from her residential treatment facility against the medical advice of her treatment team. Adrienne Jones of No Points For Style wrote this brilliant blog post about the situation, which is still ongoing.

Adrienne and Pickle's mom are dear friends of mine (that's the three of us, in the picture above, in Los Angeles three weeks ago), and I have reasons to despise Value Options of my own. So I took it upon myself to add a link to Adrienne's blog post on every posting Value Options made to their Facebook page over the past 30+ days. They never stay. They are removed, usually within a day, but I keep posting them anyway, hoping they will be read by the people at Value Options and anyone who thinks working there might be a great way to help their fellow man (hint: it's not).

Today, via Facebook, I got this email:

Dear Ms. Hickey,

I’m writing regarding your active online campaign against ValueOptions. I believe your persistence comes from a place of compassion for a story you read online and after reading your own blog, it is obvious that you are very passionate about the advocacy of mental health care in the United States, especially when it comes to minors.

We hope you understand that we share this passion. Our company was founded by clinicians and many of our employees are practicing clinicians. Many of our employees have friends and/or family members who are suffering from mental illness and/or substance abuse disorders. Many even suffer themselves. Our mission as professionals and in our personal lives is to help people live their lives to the fullest. We are not in the business of denying care for those that need it. In fact, we believe it is our job to make sure that we manage resources in the most effective manner for those that need. And as I am sure you are aware, funding for mental health treatment is dramatically underserved in both the private and public sector, so resources are scarce indeed. Our goal is to advocate for more spending – public or private – when it comes to mental health and substance abuse treatment. Our goal as a company is to make behavioral health a forefront topic in the national debate, and we have made and continue to make much headway to impact the landscape for effective, accessible care.

Regarding your apparent concerns, I’m sure you know we can’t discuss the confidential facts of any particular case with you. But we do have a few questions for you to consider. Are you sure that you have all the facts in the case you reference? Are you sure that your continued postings are a benefit to others who may need and rely on ValueOptions mental health services? Are you actually driving away those potential jobseekers who share a passion for mental health care? Perhaps those job seekers might help our company become even more responsive and dedicated to the needs of individuals.

From personal experience, we would think you would agree that navigating our health care system is never as cut and dry or as black and white as we would like it to be. But we do our best to make it as seamless as possible for our members, especially those with critical needs. On a national scale, there is an enormous challenge we face, but we work hard to offer individualized services to all our members, because everyone we serve has a unique behavioral health concern.

So again, we hope that you understand that in many ways, we are fighting for exactly the same mission as you and others out there. We ask that you discontinue your repeated attacks, and let us focus on addressing the needs of the individuals we serve and building bridges with like-minded individuals such as you. Now more than ever we should link arms to help move the agenda forward for mental illness. We hope you will consider this request.

Tom Warburton
ValueOptions

Here is my answer:

Dear Mr. Warburton:

Thank you for your letter. Let me correct a few incorrect assumptions:

1) I didn't just read the story of "Pickles" online. The author of the blog post and "Pickles" mother are personal friends. We advocate for our children with mental illness together, a fact you can witness next Wednesday, February 6, on The Ricki Lake Show, where we all appear together to discuss childhood mental illness.

2) If you read my blog, then you know I am the mother of an adolescent with an Illinois ICG, a program administrated by Value Options under the umbrella of "The Collaborative". As such, I am subjected to a quarterly inquisition by your organization about whether my son still needs treatment for his psychotic disorder. I am also aware of Value Options current trend of issuing 30 day discharge notices to ICG kids - including my son's roommate at ODTC - against the medical advice of their residential clinical staff.

To answer your questions:

1) Yes. I'm sure I have all the facts, as I said, "Pickles" mother is a personal friend.

2) Yes. I think it's important that anyone looking to your organization to be an effective case management organization needs to realize that, your posturing aside, you are ruled by the almighty dollar, above the best interest of patients.

3) I would hope my postings are enlightening those that might apply, thinking they would be able to help, would likely just be sucked into the giant machine of for-profit mental healthcare denial that seems to be your specialty. You are correct that navigating our nation's healthcare system is a difficult challenge. I have nearly 2,000 readers a day and I support hundreds of parents a year in navigating Social Security, Medicaid, and Special Education. And if I had an inkling that we were fighting the same battle, I'd be happy to support your efforts. But you are a for-profit enterprise whose actions betray the words you write. I hope you will consider my response and reflect on whether your organization truly has the best interest of the people you are charged with managing, or your board and investors at heart.

Regards,
Chrisa Hickey

I Met a Teenager On The Internet And Moved Her Into My Home

2013-01-27T15:36:00.000-06:00

Sounds like the headline of a story in The Enquirer that should have a subtitle of, "And she stole all of my stuff, poisoned my dog, and ran off with the mailman!" Doesn't it?

But seriously, we did. Two weeks ago, a smart, complex, funny young lady came to live with our family. I "met" her two years ago when she emailed me a letter about stigma and I asked her if I could post it here as a guest blog post. That post got a lot of attention, even the attention of bestselling author Pete Earley, who contacted me, sure I was a hoaxer who wrote the post myself pretending to be a teenage girl. After he and I both talked to her mother, we were shocked, amazed, and impressed that a 15 year old girl could have the insight and ability of expression that she did. That she does. And over the last few years, we have kept in close contact, moving from email communications to Facebook to phone. When her mother died last February, I was on a plane 18 hours later, without any sort of rational plan on how to explain to her relatives that some middle-aged stranger from the Internet was flying in to be there to support a 16-year-old. To their credit they gave me a chance and the opportunity to be there to support her.

We continued to be involved in each other's lives, albeit from a distance after that. She had been away at college (yes, at 16) when her mom died, but that proved to be unsustainable for many reasons, and she moved back to her hometown, floating from one sub-optimal living situation to another through Summer and Fall. At Thanksgiving she came to us for a visit and we got a first-hand account of just how sub-optimal it truly was. It took less than 10 minutes of conversation for Tom and I to agree. We gave her another option. She could come live with us and our family. So, two weeks ago, she came. She's got her own room since Wonderboy, now 22, moved out before Halloween. Tim and The Girl are thrilled to have a "little" sister. She's taking classes at our local community college, and our standard poodle, Chloe, thinks she's the perfect pillow to sleep on at night. And, with the publishing of this blog post, the assimilation into our strange little family is complete.

We affectionately refer to her as "The Bonus Kid." Now we have four. I think a more appropriate subtitle for this story would be, "and this smart, complex, funny young lady will make all our lives the richer for it."

Why I Speak Up Against Stigma

2013-01-25T11:30:00.003-06:00

I spend a lot of time on social media sites, Facebook and Twitter mainly. Today I read two posts that show you why I continue to speak out about childhood onset mental illness, and why it's important that, if you can, you speak out too.

First, on the Facebook page for a great blog called Raising Crazy, was this:

If you read parent blogs on mental illness, you may have run into this woman. She also goes by the handle, "Warrior Mom," and loves to tell us how evil we are for allowing our kids to take meds to manage their psychosis.

Later, on a closed Facebook group for parents of kids with special needs was this:

I think that says it all.

I shared my family's story in two places this month. First, HealthyPlace.com has started a new campaign called Stand Up for Mental Health, calling for an end to the stigma of mental health diagnoses and increased awareness and treatment. I'm proud to be part of the roll out with HealthyPlace.

Second, SZ Magazine this month has an interview with me about my family and our struggle to get Tim diagnosed, treated, stabilized, and now, transitioned back home. If you subscribe to SZ Magazine, it's in the Winter Issue, in the mail now.

Finally, I will be on the Ricki Lake Show on February 6th, talking with Ricki and fellow moms of kids with severe mental illness Jennifer Wohlenberg, Adrienne Jones, and Kirsten, Pickle's mom. Please check your local listings for the time in your area.

If you want to share YOUR story, click here and share it with the Parents Like Us Club.

Coming Home - Eventually

2013-01-07T11:43:00.003-06:00

"When is my next home visit?"

That's the first thing Tim asks when we talk on the phone nightly. Even the night of the afternoon Tom dropped him back at RTC after his holiday home visit, the first question was about when he could come home again. And we're working on the plan to start much more frequent home visits, more than the once a month he's home now, as the transition to him coming home permanently.

I have to admit, I'm both excited and nervous about the prospect of finally bringing Tim home to stay. Checking him into residential treatment, three and a half years ago, was one of the hardest things I've ever had to do. It's a complex web of sorrow over my child being away from me, guilt that I couldn't figure out how to get him stable at home, and relief that there may be a solution to the nightmare that was all our lives the previous years. I want him home, though. We want him home. He wants to be home. I'm just afraid of the lingering things we still need to work on, the things he's picked up in residential, and a back-of-the-mind fear that he could lose his stability and we'd be back in the hell of 2009.

Tim's never been able to handle family therapy. He was admitted to the hospital once from a family therapy session because he melts down into a violent, depressed, whirling cyclone when we talk about him in front of him. He can barely hang on during IEP meetings. I'd like to start family therapy as part of the transition, I'm just not sure if it will do more harm than good.

Keeping Focus

2013-01-03T10:31:00.000-06:00

When the Newtown tragedy happened, there was immediately a lot of Internet rhetoric around two topics: mental health care and gun control. Being a proponent of both, I jumped into conversations about both and tried to steer the conversations to addressing both. It took me about two days to realize - after the media started shouting about guns and Senator Feinstein vowed to re-introduce the assault weapons ban in the new Congress, and readers told me I diluted the message in this post - that the general public can't focus on two topics at once. That's unfortunate, because this tragedy wasn't caused by a single issue. There were several breakdowns that led to what happened at Sandy Hook Elementary School that terrible morning. But now, in the wake of two weeks of guns, guns, and more guns in the news, with only a smattering of coverage on the woeful state of mental health care in this country, I am resigned to realizing that I have to make a choice and be a single issue advocate.

So no more talk here about guns. We're back to all mental health care, all the time.

And to that end, I wanted to let you know about a new blog I've started with some friends who are also bloggers and moms raising children diagnosed with mental illnesses. It was inspired by a phrase I use here a lot, and suggested by friend and fellow blogger at RaisingCrazy - The Parents Like Us Club. Because, after all, many of us found camaraderie and support on the Internet by finding other parents like us to share ideas, information, sorrows, and joys with. The idea is that it is a collaborative blog - anyone who wants to post their story can do so. If we are to affect real change, we must stand together as a block and let our legislators know that we have a voice and we're not afraid to use it.

I've been talking to the legislative action people at AACAP - they have called on President Obama to hold a Children's Mental Health Summit, and they are encouraged to read our stories at The Parents Like Us Club. I'd like to share them with senators and congresspersons during their legislative action day in May. But I need your story to show how big the problem is.

So come on over to ParentsLikeUsClub.org and read. Submit your story. Do it anonymously if you feel you must. But share it. Your story may be just the thing that helps another parent feel less alone. It may also be the story that finally gets a congressperson to realize that we need comprehensive mental health care reform and we need it now.

Nothing Is What It Seems - Follow Up

2012-12-27T10:24:00.001-06:00

Tom has been making a flurry of phone calls and doctor's appointments over the last several weeks. After two failed attempts to get Tim into the cardiologist for the echo cardiogram his doctor wanted, he finally went in last week and got it accomplished. And when I say failed attempts, I mean failure of epic proportions Tim just doesn't refuse when he's scared / nervous / irrational about why he doesn't want to see a doctor. He announces it with gusto. Tom has tried twice since October to get him in for the echo. The first time, Tim refused to go and paced / talked to himself / shouted and swore with arms flailing. The second time, he picked up a microwave oven and threw it to the floor. When he was finally calm enough - days later - to talk about why such a violent refusal, he said that the sticky pads they put on his chest for the EKG would rip his skin off, and there was no way he was going to let that pain happen. I explained that the echo was an ultrasound - and what an ultrasound is - and there were no sticky pads involved. Why oh why didn't I think about this before he damaged kitchen appliances? So he went. No word on results yet, but it's the holidays, so we will let it slide until next week.

Getting an EEG seems to be about as easy as getting nuclear launch codes. Tom has called several neurologists all who refuse to see him because they don't treat mental illness. Uh, no shit. We're not asking you to treat him, just give him a damn EEG and send the results to his shrink. It turned into this circular argument akin to a Laurel and Hardy routine:

"We don't treat mental illness."

"I'm not asking you to treat him, just run an EEG that we can share with his psychiatrist."

"What's the EEG looking for?"

"Abnormalities that might explain his psychosis."

"But we don't treat mental illness."

"I'm not asking you to treat him, just run the damn EEG."

You get the picture. There's a lab near us that will run one if the shrink writes an order. So we'll try that approach after the holidays.

Finally, we got the pdoc that treated him before he went to residential to agree to write up the psych eval for guardianship. Again, you wouldn't BELIEVE how many doctors either won't or can't. The pdoc from his previous residential would but couldn't because she's not licensed in Illinois, just Wisconsin. The pdoc from his current residential won't because it's a conflict of interest in his mind, since he's the doctor at the residential that currently has him. Tom had to do an end run around his old pdoc's staff to get to him to even talk about getting his help because they wanted us to do an intake appointment with the doctor before they'd even discuss it, since Tim hasn't seen him regularly since he was 14. Instead, now, he's agreed to read the paperwork between now and then and write up the form for the court. Of all the pdocs Tim has interacted with in the past decade, Dr. D. still knows him best, so we are very happy about this development. Now to submit paperwork - and money to the court, and get this done.

I hope you all had a pleasant holiday. Tim's with us all week and is in very good spirits, which is a blessing. His obsession with sock monkeys was fed by this gift from Santa - yes, those are 6 foot tall footie PJ's!

Women In My Corner

2012-12-24T08:16:00.000-06:00

Last month I was honored with a special note of love when Adrienne, extraordinary mom and blogger at No Points For Style invited me into the Circle of Love at Kir's Corner with this amazing blog post.

This Christmas Eve I get the opportunity to pass on the love to another amazing woman who's touched my life. Julia, this is my Christmas gift to you, as thanks and as praise. Thank you, Kir, for the opportunity.

Happy Holidays to you all. May you have a peaceful celebration, and may you be as blessed with extraordinary women in your corner as I am.

Guest Post: Newtown

2012-12-17T20:03:00.000-06:00

As those reading this are likely already aware, on Friday the 14th at around 9:30am, a man armed with various rifles entered Sandy Hook Elementary School in small, bucolic Newtown, CT and fatally shot 27 people, of which 20 were children between the ages of five and ten. Like most Americans, I was and am stunned and devastated by the news. Whenever a child's life is cut short, especially in such a brutal and heinous manner, we cannot help but grieve not just for who they were, but for all that they never had the chance to become. We grieve, as well, for the adults who dedicated their careers and, ultimately, sacrificed their lives for the children they were charged with educating and protecting. In this difficult time, our thoughts, support and love are with all of those impacted by the shooting, as they struggle to begin the seemingly insurmountable task of adjusting to a new reality that is helplessly incomplete without many of their neighbors, friends and loved ones.

In the midst of a tragedy as jarring as this, it is natural to wonder how a human being could do something so violent and so horrific. We feel the need to understand why and how an event such as this could occur. We feel driven to attempt to make sense of what seems to be senseless. We do this to help us process, to understand and to compartmentalize so that we can find a way to push through our terror and function. Unfortunately, this wondering often leads us to make assumptions about the killer and any population he or she may or may not be a part of that not only cannot be substantiated; but that also have the potential to be harmful and stigmatizing to others in the group he or she is speculated to belong to. With mass shootings, this tends to be those suffering from psychiatric illnesses, especially Schizophrenia and Bipolar Disorder. Indeed, less than 24 hours after the gunman entered Sandy Hook Elementary school, pundits and viewers alike were already lining up to point the finger at mental illness -- demanding that those “crazies” be legislatively banned from owning a firearm and crying out that people like “them” not be allowed to walk the streets – and they have shown no sign of letting up; battle cries made before even a quarter of the events and circumstances leading up to all of this have been discovered or revealed.

To be clear, it is possible for psychiatric disorder to lead to violence, including violence on a mass scale. As we have seen with the Tuscon and Aurora shootings, severe, untreated psychotic illness can lead a person to commit heinous and unspeakable acts. When that happens, we need to sit down and launch a serious investigate to see if the deficits of out mental health care system led us to missing opportunities to help these shooters before they took the lives of others. It is also true, however, that these cases, as devastating as they are, are a rare minority. The vast majority of persons diagnosed with a mental illness are not violent and, when one looks at the statistics, less than 10% of all violent crime committed in the United States can be attributed to mentally ill offenders. In fact, someone with a mental health condition is more at risk for becoming a victim of crime than the perpetrator of it and are 11 times more likely to be victimized than the general population (compared to a mere 3% higher likelihood of becoming violent. To provide perspective on that, being male increases your risk of becoming violent significantly more, with males being 10 times more likely to commit murder and 6 times more likely to commit non-fatal assaults than non-males. Should we vilify and draw conclusion on the entire male population based upon that?). Even if, as some early reports are suggesting, the Newtown shooter had a mental illness, that does not automatically mean that said illness is the causative factor in his crimes. We must remember that those with mental illness are equally capable of making dangerous and catastrophic decisions as those without, separate from any pathology they may be suffering from; this is particularly true when one's illness does not impair their ability to discern what is real and what is right. In other words, just because someone with a mental health condition decides to rob, rape and/or kill, it does not mean they did so because of that condition; assuming so is both dehumanizing and stigmatizing to those with mental illness, as it implies that their mental illness is their defining feature, that they are incapable of experiencing the full range of human thought, emotion, flaw and ability, and paints an image of the mentally ill as dangerous and deranged. Yet, despite all of this, the media insists on continuing its representation of mass murderers as mentally ill and of the mentally ill as mass murderers.

As someone who has suffered from a serious mental illness for most of my life, it is difficult to see myself portrayed in such a way, especially knowing that image – of a deranged and homicidal mentally ill killer – is one shared by many, if not most, Americans. It is difficult to know that, if I were to go up to them and tell them my 'secret', these Americans would cease to see me as a human being equally complex as any of them and instead fear me to be a cold-blooded killer who could go off at any moment. In their eyes, I would be one of “those” people, undeserving of the same rights – to inclusion, to equal occupational and educational opportunity, to social and romantic to pursuits, to self-determination and to the assumption of innocence until proven guilty – and somehow inherently separate from them. They would fail to see my quirks, my humor, my passions, my blunders, my successes and my humanity. They would fail to see that there is no more separating them from me than there is separating them from the person suffering from chronic heart, autoimmune or lung disease; an illness-causing physiological or structural difference, nothing more. And we would both walk away from that interaction with nothing solved and nothing done to help understand why tragedies like this happen and what needs to be done to keep them from happening again.

Please, as you take steps to grieve this tragedy, I ask that you refrain from making assumptions about the shooter that cannot be substantiated; I ask that you not equate the actions of this shooter with the intentions of an entire population of people; I ask that you not vilify, demonize or outcast another human being; and I ask, above anything else, that you remember that nothing about this tragedy can be simplified to an issue of the struggles and actions of those people, as, at the end of the day, there are no those people, there is only us.

Thank you, Erika

Why?

2012-12-16T20:43:00.000-06:00

I've been watching the news, joining in on discussions on social media, and reading the editorials and blog posts about the horrific events that transpired on Friday in Newtown, Connecticut. I've spent three days in many different states of mind - disbelief, horror, grief, anger. I've wept tears for the children and their teachers that have been lost. I've sat numb, reading the statement by the shooter's father, my heart aching for the confusion and sorrow and shame he must feel. All this time, my mind keeps coming back to the same question. Why?

Just moments ago I listened to President Obama address the nation from the high school in Newtown. I sat silently and listened to him read the names of those who, because of this unimaginable tragedy, are no longer with us. And I heard him say that his personal reflections since Friday have given him resolve to find answers. I have a few questions I would like to ask that I feel he and the rest of our government need to answer, if we are to find a way to prevent another Newtown, another Aurora, another Tucson, another Columbine.

Why is it, four years after passage of the Mental Health Parity Act, there are still no rules written on how the law is to be executed and enforced?

Why do parents of children with Autism Spectrum Disorders and Mental Illness have to become legal experts in IDEA law to get their local school districts to provide the services their children need to benefit from the public education to which they are entitled?

Why do we have to wait until our mentally ill teens prove they are a danger to themselves or others before they are eligible for treatment?

Why are we closing state mental hospitals and community mental health clinics in favor of spending more on prisons?

Why are we demonizing parents who have made the agonizing decision to resort to medication for their children?

Why are we still spending billions of dollars a month in Afghanistan, instead of spending it on the National Institutes of Mental Health?

Why are there 180,000 gun shops in the United States, but only 7,000 child psychiatrists?

Why is it easier to buy a gun than it is to get healthcare?

Why aren't we funding Community Intervention Training for all of our police nationwide?

Why does Congress see healthcare as a privilege, but tax cuts as a right?

Why are we shouting at each other over whether abortion should be legal, when so many children that are already born are abused, neglected, and impoverished?

Why does anyone need a semi-automatic, high capacity clipped anything?

Why don't we realize that it's cheaper to invest in our citizenry than it is to bury or incarcerate them?

I can't answer these questions all by myself. There are complex issues behind each and every one. But how many more six-year-olds will we have to bury before we are ready to set aside our differences, sit down at the table together, and roll up our sleeves and solve them?

We've Lost Hope: Guest Post

2012-11-29T10:09:00.002-06:00

I was honored to be asked by Pete Earley, best-selling author and Pulitzer Prize finalist, to write a response on his blog to a letter he received from a concerned parent about their son, who struggles with both mental illness and addiction. Here is their letter:

Dear Pete,

We have tried to get our son professional help. I think he has bipolar disorder, although he possibly could have schizophrenia. We know he has an alcohol addiction. He has not cooperated with hardly anything, and we’ve been unable to get him to go to our local mental health center, although officials there said he is eligible for treatment.

We feel like our hands our tied. The few times that we’ve gotten him to a psychiatrist, our son denies that he is sick, won’t take his medicine, and is extremely hostile to doctors for the short time he’s being seen by them. We’ve had him in our house for several months with his erratic moods and high level of anger. Yesterday he asked to go to a homeless shelter and he is now on the streets. If we try to visit him, he runs away. His dad and I are at the point where we feel resigned that there is no hope nor help for our son. The system has worked against us at every turn … and he needs help. People have recommended “he needs to hit rock bottom” and that we need to wait for him to *want* help.

We simply don’t know what to do. Do we wait for him to hit rock bottom on the streets where we know he is not safe? In our view, the mental health network has been ineffective at best, and is rolling the dice with people’s lives. Now we can see how barriers in the mental illness system keep people from receiving basic services. This has been hell for his dad and me, and I’m sure worse for our son. If you have any advice please let us know.

A concerned parent.

Read my reply on Pete's blog.

The Gap Between Reality and Congress

2012-10-26T10:37:00.000-05:00

I'd like to ask you to imagine a scenario:

You are an adult, married with kids and a mortgage, employed full-time in a high stress job that involves a significant amount of travel, and you have been struggling with Depression for a protracted period of time. Eventually your Depression symptoms cause you to seek professional help, as both your personal and professional lives are suffering. You enter a hospital for treatment and are diagnosed with Bipolar Disorder Type II, and begin treatment including therapy and medication, away from both your family and your job.

After about 75 days inpatient you return to your home for outpatient treatment. You are still unable to return to your high stress job. After about 21 days in outpatient treatment, you and your doctors determine you should return to inpatient treatment in order to stabilize your condition. You do go back inpatient and, to date, you've been back there about 2 weeks with, very likely, several more to go.

Now, let's assume your job comes with average benefits of 2 weeks vacation, average HMO-type healthcare benefits and FMLA.

You've been off work for 15 weeks. Your FMLA benefits kicked in week two, which required you to exhaust your vacation for those first two weeks, so you haven't gotten a paycheck in 13 weeks. You still have to pay your healthcare premiums, though, so you're out of pocket somewhere in the neighborhood of $1,500 for the employee portion of those 12 weeks, plus deductibles for medication, hospitalization, and outpatient treatment. Now that the 12 weeks your job is guaranteed by FMLA have passed, your employer has just informed you that you have lost your job, and now your medical insurance is COBRA, and you owe $2,800 a month for your insurance premium from here on out.

You can't afford the COBRA without a job, and you can't qualify for Medicaid because you still have your house - for now. So the medical bills for your second inpatient stay are piling up, and you will be behind on your mortgage in a month or two. Your doctors feel that it will take very likely the rest of the year to get your condition stabilized to the point where you can return to work, but he strongly suggests you take a much lower stress job.

By the time you are discharged, you are three months behind on your mortgage, you have over $20,000 in medical bills piled up, and you're unemployed. It's Christmas, but you can't afford anything for your children. Your spouse has had to cut back hours on his/her job because someone has had to be there for the children while you have been inpatient for over 5 months this year. You're facing homelessness and bankruptcy in the new year. At least you'll soon qualify for Medicaid, but since the doctor who has been treating you doesn't accept Medicaid, you'll have to start over with a new psychiatrist.

Now imagine you have great health insurance with no premium that covers the best doctors and hospitals in America. You not only still have your job, but you have been told you will keep it for at least another 2 years. You've been paid 100% of your salary for the 15 weeks you haven't worked.

If you are Congressman Jesse Jackson, Jr, this is no hypothetical. It's your reality. And this is the great mental health care divide in this country.

I hope, when Congressman Jackson finally returns to Congress, he fights for the rest of us that live the first scenario.

Nothing Is What It Seems - Part Two

2012-10-01T10:39:00.000-05:00

If you didn't read part one, click here.

In 55 minutes, the reality we've been living in was questioned. The prognosis we'd been operating under was debated. The fate of Tim's future quality of life was mulled over. This was all the result of one question posed by the doctor.

If Tim's cognitive issues are organic - from birth - is it possible that the psychosis and behavioral issues are a result of seizures, and NOT Schizophrenia?

We discussed several studies (and here) that show persons with cognitive issues and psychosis often have seizure related disorders as well. The doctor told me several things he'd learned over his 40 years in psychiatry:

Persons with Schizophrenia / Schizoaffective don't typically have cognitive issues
Persons with psychosis where the hallucinations and paranoia are mostly around self-preservation - they report the voices tell them to run away or hit others or injure others that mean them harm
Persons with Schizophrenia / Schizoaffective don't usually care about pleasing other people
It is not uncommon for persons with TBI or "organic" cognitive disabilities to have hallucinations and delusions, but most are rooted in seizure disorders

If you take those issues and compare them to Tim, Tim doesn't fit the "typical" person with Schizophrenia. He does have cognitive issues. His latest IQ testing pegs him at 62. His hallucinations and paranoia are mostly centered around self-preservation. He has an overwhelming desire to please. He's never had an EEG. And, considering what we've discovered about our daughter over the past few months since she's been treated for a frontal lobe seizure disorder, I understand how seizures can cause behavioral issues because I've seen her improvement in the few months since she began treatment (you can read my blog post on her transition from RAD to Seizure Disorder later this month here).

Now, the doctor didn't have all of Tim's history, and some things about Tim that I shared with him made him want to do more research. Like the fact that Tim's IQ has dropped from 92 to 76 to 62 over a decade, or the fact that Tim's delusions do, from time to time, seem to be more "classic," like paranoia about war breaking out, his fear of water being poisonous or thinking that the CIA is following him. I do have to concede that, more often than not, when he reports what the voices say, it's "they told me to run away," or "I have to hit (name of classmate here)." When he's struggling he reports that they tell him he is bad and they have told him to harm himself, which is more "classic" Schizophrenia, but those are less common than the simple self-preservation commands he reports.

This doctor also expressed his belief that Childhood Onset Schizophrenia is very, very, very (his emphasis) rare, if it exists at all. He actually caught himself saying it doesn't exist and modified, I'm sure, for my benefit. I agree it's rare, but he said this multiple times, and I tend to write off doctors that say something that I've seen in other children with my own eyes is next to impossible. That is a strike against him. But he does firmly believe in Childhood Onset Bipolar Disorder, and I find it fascinating he thinks one is possible but not the other. But I digress.

He left me with two thoughts. One, in the time he's been a practicing psychiatrist, the advancement of what his field understands about mood, thought, and intellectual disorders has progressed by about - his words - a half inch. There is so much that we still don't know. So second, because of that, it's worth exploring other options that may make Tim's prognosis for a happy and productive live improve. He recommended we find a neurologist and get an EEG, to rule in or out any type of seizures. And we're in the process of doing just that. Tom started to get his hopes up a bit over the weekend that Tim could have some sort of miraculous reversal of symptoms and have a better life. I am playing the skeptic. We've tried everything else we have been able to try, based on everything we know. I don't see why we shouldn't explore this.

Nothing Is What It Seems - Part One

2012-09-28T15:46:00.002-05:00

Image by Detlef C

Tim moved to a new residential program in June, as he would be aging out of his previous program when he turned 18 in July. We were happy to find one we liked with a program similar to the one he was used to, much, much closer to home. As with most residential programs, after he'd been there 30 days they had a cross-functional staffing. This is basically a meeting with all the different types of professionals that interact with Tim to talk about his diagnosis, plan, and progress. These typically happen again every quarter and, in our case, are required to be done and reported to the State to ensure that he still meets the criteria to qualify for his ICG grant.

The most recent quarterly staffing was this past Tuesday. Typically I interact with doctors and social workers and Tom handles school and IEPs, but I couldn't get time off to attend the staffing this week, so Tom went. When he got home he handed me a draft copy of the report they were to submit to the State and said, "this doesn't look right, but I want you to review it." I got two paragraphs in when the top of my head blew off.

As part of the intake process and initial staffing, Tim was evaluated by the RTC's staff psychiatrist. The second paragraph of the staffing report had the doctor's diagnoses based on his initial psychological evaluation. It wasn't Schizoaffective Disorder. It was Mood Disorder Secondary to Cerebral Dysfunction. I had to look it up. Basically it means his behaviors and issues are due to some either organic or traumatic brain disorder or injury. Tim does have an additional diagnosis of Mild Cognitive Disability, as his last IQ test at age 14 put his IQ at 62.

After I read about it, I had two burning concerns. First, would this diagnosis mean he was no longer qualified for the grant that helps pay for his residential treatment? And second, how would a doctor that has seen Tim maybe 60 minutes over the past several months have the gumption to change the diagnosis that the two psychiatrists that have been treating him since he was 12 gave him?

Read the rest after the jump.

After Tom peeled me off the ceiling, and my compadres in the Parents Like Us club shared my irritation on our Facebook support group, I called and set up an appointment to talk to the psychiatrist in person this morning. If you've read any of my posts before you know I have zero patience, so imagine what it was like to live with me yesterday. But I held it together, gathered the last four years of psych evals, and set out this morning to my appointment with the pdoc. Tom reminded me not to go in there with - his words - "guns blazing" if I want to hear the doctor's reasoning. That's not my nature. I'm typically a hot-head right off the bat when I've been / feel I've been wronged and I calm down later. But this time I put on my big girl pants and decided to go in and tell him I had two objectives of the meeting:

Ensure he was aware that Tim is NOT a DCFS kid, and the diagnosis on the psych eval could make him ineligible for his grant
Hear the doctor's rationale for the new diagnosis

I had a 30 minute appointment with the doctor, and ended up talking with him for an hour. And it was really quite interesting. Right off the bat he admitted that the additional diagnosis he made of Psychosis NOS was omitted from the report in error. He also admitted he didn't realize Tim was an ICG (and not a DCFS) kid until I - The Mom - called. He planned on correcting the omission from the report before it is submitted to the State. So - first issue handled inside of five minutes. The conversation we had over the next 55 minutes is what I am chewing over in my mind.

I will post that tomorrow.

Gah! No, Seriously - Gah!

2012-09-05T11:19:00.001-05:00

As I drove in the car with Tim yesterday, my mind wandered to contemplating what crazy-fueled car behavior of his irritates me more – the times he chatters incessantly, or the times he sits catatonic, mouth agape, staring into nothingness for the entire drive. Yesterday I was treated to four solid hours of fly catching and breathing that sounded either like Darth Vader with a sinus problem or the snores of someone suffering from sleep apnea. I’ve asked doctors before if that hideous sound is the result of dystonia and I’ve been assured it’s not. I started to wonder, as it grated on my last nerve, if I need to have the psychiatrist drive him around for an hour and then give me his opinion again.

Read the rest at Support for Special Needs.

Book Review: January First

2012-09-04T07:00:00.000-05:00

It was Tim's first birthday when we realized something wasn't quite right. We couldn't put our finger on it, but sitting in a high chair, screaming at the group of friends and relatives surrounding him, terrified by the single candle on his cake, wrists and ankles turning frantically, we knew he was different. It would be 10 years, four therapists, two psychiatrists, six diagnoses, a dozen IEP meetings, two neurologists and one 45-day hospital stay later before anyone ever said the word "schizophrenia" to us. Probably the best thing that happened to Michael and Susan Schofield is that they only waited half that long before a doctor said it about their child.

Michael Schofield has written a book about those first years with their daughter, Jani, entitled "January First." A few disclaimers here before my review: Crown Books, the publisher, sent me a free copy to read and review here on my blog. Also, I "know" Michael Schofield, sort of. When a story about Jani was published in the Los Angeles Times, a friend emailed me the link to it, and I contacted Michael via email. We emailed back and forth a lot for a few years, and I was, at one time, a member of his Yahoo support group. Michael and I don't always see eye to eye on treatment options for Childhood Onset Schizophrenia, and we both have strong personalities and speak our minds. But I feel safe in saying we have many of the same friends in this wierd fraternity of Parents Like Us, and we respect each other, even when we don't agree. Ok - disclaimers over. On to the review!

The book chronicles the Schofield's journey to first understand then try and find help for their daughter, January (Jani), from age four to just shy of age seven. Jani was - is - an extremely intelligent, extremely verbal child. As such, it is easy for her parents, doctors, and teachers to consider her facination with numbers and her amazing collection of "imaginary" friends as the side effect of genius. But when her brother, Bhodi, is born, Jani erupts into violence directed at this helpless infant, often at the direction of, she says, her menagerie of rats named after days of the week and a precocious cat she calls 400. It is apparent that she sees these creatures, all inhabitants of a mystical isle off the coast of California she calls Calalini. It is also apparent that Jani can never be left alone with her baby brother, even for a second.

And so it begins. A parade of doctors are consulted in an effort to understand Jani's strange world and her compulsion to harm her brother. Along the way the Schofields enounter the same clowns in professisonal garb many parents like us have encountered - the one that says she's being coddled and not disciplined; the one that says she has anxiety; the one that reports her as abused. Through it all Michael struggles to hold down a job, Susan loses hers, they start med trials on a four year old, and they go behind each other's backs to both avoid and push hospitalization for answers. By the time Jani is six-and-a-half she's been hospitalized four times and they have made the decision to live in two apartments in the same complex to keep Bhodi safe from Jani. And they have a diagnosis from UCLA.

Michael has been writing a blog for a number of years, and I have read every post he's ever written. I have to say, this book is a far cry from his blog. Michael's blog posts are a pleasure to read, full of raw emotion and elegant prose. The book reads more like a clinical account of the proceedings. Even the emotions that Susan and Michael had to live through sound more like a third party account of what transpired. Knowing what I know about Jani and Michael and Susan, I was sad to see the rawness of Michael's writing style sanitized, I have to assume, by editing.

The book ends in Summer 2009, just shy of Jani's seventh birthday, with the Schofields living in two, one-bedroom apartments, armed with an official diagnosis and a lot of what-ifs. Today, Jani has recently celebrated her tenth birthday and the Schofields are again able to live under one roof. The what-ifs haven't subsided. Michael notes in the epilogue that having a child with Schizophrenia isn't about helping her learn to live a beautiful life; it's about trying to string together a series of beautiful days. I can absolutely relate. In the past month Tim's days have vaccilated between building a boat for a cardboard boat regatta, running from class and punching a steel door at the direction of his auditory hallucinations, and wrapping a plastic bag around his head, screaming that he wants to die. One day at a time isn't a 12-stepping mantra for the Parents Like Us club, it's a necessity for surviving with even a portion of our psyches intact.

As a parent nearly 10 years farther down this journey than the Schofields, I have to imagine there is a sequel festering in the wings. Jani has yet to begin puberty. When the hormones of the tween years kick in, all hell breaks loose. Meds that were working no longer have any impact. Behaviors that seemed to be past rear up in triplicate. Social awkwardness gets stood on its head as the rift between the child with the mental illness and his/her neurotypical peers is no longer ignored or avoided, but is instead mocked and bullied. If I have one piece of advice for the Schofields, it's brace yourself. The next decade will in all likelihood make the last one look like a cakewalk. I hope I'm wrong. But this is 28 different med combinations, 12 hospitalizations, five different therapeutic day schools, four DCFS investigations, and two long-term residential treatment stays since the age of 11 talking. But the Schofields had a great head start that we didn't have. I envy that in a bizarre way the Parents Like Us club will probably understand.