Tuesday, June 3, 2014

Congressional Briefing after Isla Vista -- We need HR 3717 now more than ever

Mental Illness Report
Representative Tim Murphy (R-PA), chair of the Energy and Commerce Committee’s Oversight and Investigations Subcommittee, held a briefing on the subcommittee’s report on its investigation of federal programs that address severe mental illness. Topics included a bill to overhaul the current mental health system sponsored by Representative Murphy and a competing bill sponsored by Representative Ron Barber (D-AZ). Representative Murphy, a practicing clinical psychologist, was joined in responding to questions by a forensic psychiatrist, a mental health advocate, and a father whose son suffers from schizophreni
"We've found it easier to focus both the discussion and public resources on gauzy programs for "behavioral wellness" and "emotional well-being" than to confront the painful reality that those with schizophrenia or severe psychosis are more likely to up without care (4.4m), homeless (250,000), in prison or on parole (1.3m), or dead by or attempting suicide (1.38m) than in appropriate psychiatric treatment (approximately 4m)."



  1. 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 "behavoirs" 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 danger...to 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 wasnt...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, cognitiven 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 released...to the detriment of both Paul and us.

    The mothers on your show today are friends of mine with "Pauls" of their own. I call them Tiger Mothers of Perpetual Determination... my mother was the original. I am a Sister of Perperual 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 enforecemt 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. Please discuss the Medicaid IMD Exclusion. It 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 origion of Perpetual Determination.

    Ilene Flannery Wells
    Pauls Legacy Project


    1. Sorry...copied my comment from the article ion the Diane Rehm show because it seems to fit. Forgot to edit the section about the show.