Friday, June 6, 2014

Finally, someone is listening to the families!

Last week, as I watched Rep Tim Murphy’s latest briefing I cheered with total triumph! For too long families like mine have been ignored. We have watched our loved ones suffering with acute psychotic episodes, deteriorating to the point we're afraid for our safety and the safety of others. 

Instead of systems working together for solutions, people look the other way, ignoring the warnings – yes this happened in Isla Vista, it happened in the Navy Yard, and it will happened again – somewhere in the USA.

And oh my God, what do these very individuals say after the latest preventable tragedy hits the airways?  
“How could we have prevented this unspeakable tragedy? Do we need better gun laws? Where were the parents of these individuals, and why didn't they do something?”
Let me explain what it’s like to be a parent of a brilliant young man who has a 21-year documented history of living with a neurological brain disease. Now as an adult, it has developed into a psychotic disorder and like other diseases will continue to deteriorate without treatment. Currently he lacks capacity, due to anosognosia or an inability to recognize he has symptoms and refuses treatment! 

1.) We have reached out to our family and church – but they alienated our son by turning away, not knowing what to say.   

2.) We reached out to the local community mental heath system (CMHC) and they are unable to help unless our son seeks help voluntarily. He doesn’t believe he has symptoms so there is no way he’ll agree to see a doctor.

3.) We reached out to our local and state law enforcement agencies and they said, "It's not our job” or “it's not against the law to be delusional.” 

4.) Out of desperation, we turned to the justice system, criminalizing our son, hoping to have him hospitalized against his will – a horrific ordeal that no family or individual should endure! Yet instead, our son wound up behind bars, punished for the brain disease he was born with.

Yes, only in America!  
Many naysayers report that ‘trauma’ causes brain diseases. The lack of treatment creates more traumas than a person can bear! My point, last year there were over 40,000 suicides and over a million suicide attempts! Additionally, 356,000 individuals with serious brain diseases were in the United States’ de facto institutions: jails and prisons last year. 
The cost of not caring: Nowhere to go
by Liz Szabo, USA TODAY

5.) We reached out to state advocacy groups asking them to lobby for policy amendments and they said, “Now is not the time – maybe next year.” Or we heard, “We need to be careful what we advocate for – or we might lose our funding from SAMHSA!”

6.) We contacted CEOs of state agencies and they said, “We need to be careful about asking for system changes or the FEDs might close the psychiatric hospital!” (How is that for intimidation when you have joined forces with other exhausted family members to advocate to replace a 200-year-old antiquated hospital?)

7.) We reached out to state leaders such as the Governor, Commissioners and Secretaries of the Cabinet of Health and Family Services, (CHFS). We spent countless hours arranging meetings and their response was: “The system is broken and sorry we have failed your family members.”

8.) Then finally years later, when we are so exhausted we think we can do no more, we generated hundreds of letters and phone calls and attended dozens of strategic planning meetings with state legislators, and they said, “We will sponsor bills to amend the current mental health law, but the CHFS added expensive fiscal notes, stating it would cost too much.”

Year after year, we have watched our son cry out for help in the most inhumane way and no one listens. Due to symptoms of his untreated illness, he has been discriminated against, labeled moderate risk of violence’ , with a file marked CASE CLOSED’ by ‘service agencies’ that receive federal funds, with absolutely no accountability.

Finally, families like mine have a hero in Congress who is listening and his name is Rep. Tim Murphy. 

For over 2 years, Rep. Murphy has worked tirelessly to bring changes to the federal government’s wasteful spending of your tax dollars, by sponsoring a bill that would over-haul a broken and dysfunctional mental health system.

As of today, Rep. Murphy’s bill H.R. 3717, The Helping Families in Mental Health Crisis Act has 89 Cosponsors – Republican [57] Democratic  [32].

H.R. 3717 needs a few additional co-sponsors so it can pass out of committee.  

"Our loved ones need treatment before tragedy!"   

Please help us! Call your US Representative in Congress today and ask them to cosponsor this important bill. 

Click here to contact your US REP


  1. Thank you for sharing this eloquent and heartbreaking account of your family's tragedy. I think you should send it to all members of Congress and to any journalists you see who are writing on this topic.

  2. Thank you GG!!!

    My family started the journey into the realm of treatment for the seriously ill with mental illness when my twin brother Paul became severely ill with schizophrenia in 1976. At the time, the severity of the illness, not whether Paul was a danger, was the deciding factor for the need to keep him in the hospital. It was the fact that his positive and negative symptoms were very severe...had nothing to do with his "behaviors" per se... now it is all about behaviors even though Dr. Insel of the NIMH will tell everyone that it is the very psychosis that is the the person's brain.

    The fact that Paul had no clue he was sick, combined with the persistent severity of his symptoms, meant he did not have the capacity to handle or benefit from treatment in the community... This perfectly aligns with Olmstead. Yet it is ignored by the disability rights groups. Yes, the state hospitals were crumbling run down places and at the time even I considered it like a prison. ..but it was a hospital... but I can almost guarantee that had Paul become sick today...He'd be in prison because of this horrible "dangerous" standard which no other illness is required to meet when a person lacks capacity.

    My parents agonized over the decision to have Paul committed. Yet, when he was released, we were unprepared for the changes that we had no clue had taken place during those 20 yrs...and Paul suffered greatly from the expectation that he learn to "live like an adult" when he was still delusional and had severe cognitive disabilities (schizophrenia is, after all, a developmental, cognitive brain disorder). And he never gained real insight...even when he was dying of lung cancer. It took a fatal illness to get him in a facility that treated him as a whole person....yes, an institution, and it was the one year that he had the best mental state he ever had in his life. I will cherish that last year.

    I am so very grateful now that my parents were able to commit him, as agonizing as it was for him and us. Since there was no HIPPA, my mother was still very involved in his care...was there every week for 15 yrs...till she died....and the doctors gladly shared what they were doing and what his condition was with her. We did not get that same cooperation when he was the detriment of both Paul and us.

    Not all are so severe that they do not recover, as Paul never did. Most do not need institutional care. But they aren't even getting the chance of treatment now, like Paul did.

    GG is a of mine with a "Paul" of her own. There are far too many of them out there who are crying out for help and no one has listened - until now (HR3717). I call them Tiger Mothers of Perpetual Determination... my mother was the original. I am a Sister of Perpetual Determination.

    Paul had a rough life, made worse by the failures of the system, beginning with the Medicaid Institutes for Mental Diseases (IMD) Exclusion, which was the catalyst for creating the huge bed shortage we have today. And ended with the inept enforcement of Olmstead.

    The ACA has started to repeal the IMD Exclusion, an archaic and discriminatory and hurtful law, in a limited way, as would HR3717, Murphy's bill. The Medicaid IMD Exclusion needs to be fully repealed.

    I support HR3717 for the other reforms, especially the changes to HIPPA to allow families greater participation in their loved one's care....although I would prefer a complete separation from SAMHSA for the treatment of serious mental illness as they have abandoned the Pauls of the world. SAHMSA ignores the fact that half of all people with schizophrenia lack insight....have anosognosia.

    Please read our book about Paul...then remember...he was one of the lucky ones because he was never incarcerated or street homeless. It also provides the origin of Perpetual Determination.

    Ilene Flannery Wells
    Paul's Legacy Project