STORIES FROM ACROSS THE USA - A COMPOSITE

Comments in response to Teresa Pasquini’s “Shattering Silence” campaign (https://www.change.org/p/mary-gilberti-and-nami-board-of-directors-join-families-advocates-of-the-4-in-shattering-silence-about-serious-mental-illness). 2017

“My son is in need of mental health treatment, he thinks he is not ill! I will need help getting him off the streets. He is homeless!” FLORIDA

“People with SMI are often incapable of accepting and continuing treatment to make their lives manageable, calm, and stable - for the inflicted as well as their caregivers and the community at large. We need to do everything in our power to assist families help their loved ones by removing barriers to treatment in the name of privacy and rights before the next inevitable, preventable tragedy occurs.” CALIFORNIA

“I love someone with schizophrenia. He was mandated to Assisted Out Patient Treatment (AOT) in 2009 because he attempted to kill himself and was forced to inpatient four times in the year. He was DX in January. With AOT he went into a half way house for nine months. He became stable and started to live his life. He graduated with honors with a BA in management, works, drives, has an awesome sense of humor, and is starting a peer mentoring program. He will apply to get his Master's degree in counseling and human services next fall. He could have done none of this without the support of his AOT team. The treatment model for people with psychotic illnesses is very flawed. The more support they get to stay stable the better outcome for their life. If they are delusional they can't make rational decisions. Please support AOT.”  CALIFORNIA

“Recently, my adult family member took his life though we tried for nearly a year to get help for him. He had complete lack of insight about his condition and thought he could not die. His neighbors even called the police to report his dangerous (to himself) behavior and we called them and the local mental health department to see how we could get help. We were blocked by the current laws and criteria that make it almost impossible to get help for someone who says they're ok, even when multiple people are reporting and trying desperately to get them help. This was deadly for our family member and traumatic for our entire family. No family or person should suffer this way! It is too late for our loved one, but there are so many more precious lives that could be saved if progress could be made. Every person you see out there on the street (or wherever) is someone's child, sibling or parent. Please help by passing and implementing measures that will help the most vulnerable in our society and their families.”  COLORADO

"I agree that those who have anosognosia, and do not realize they have a mental illness or refuse to take meds, are left to their own devices because, in spite of being mentally ill, their civil rights are more important than their brain disorder. So they can't be forced to take medication against their will.”  PENNSYLVANIA

“I had an older sister who desperately needed help and did not get it. She died alone, without family and homeless."  NEW YORK

“My family has suffered greatly because of severe mental illness of family members: my deceased husband, my son and my sister-in-law. Now my husband and his brother are dead and my son accused. Help stop the pain and suffering families who are unable to get the treatment their love ones need, even when they themselves don't believe it to be so.”  NEW YORK

“As a family member, directly involved in the care of someone released over 50 times without AOT, I know it just doesn't work. Now with just one AOT involvement, my family member has had zero forced hospitalizations in over 6 years. AOT works. Stop the pain and destruction of lives, so advocate for those too seriously ill to help themselves. AOT for SMI Works!”  WISCONSIN

To Be Continued...

Photo credit: Christine/Flickr 

Photo credit: Christine/Flickr

 

LETTER TO HHS INTERDEPARTMENTAL SERIOUS MENTAL ILLNESS COORDINATING COMMITTEE - Jeanne Gore, Teresa Pasquini, Dede Ranahan and 36 Co-signers

This letter was presented at the committee's opening meeting (8/31/2017).

Dear Members of the US DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERDEPARTMENTAL SERIOUS MENTAL ILLNESS COORDINATING COMMITTEE:

We, family members of the 4% who have a serious mental illness, would respectfully like the opportunity to supply you with a rebuttal to Elyn Saks' article, “CONSENT DILEMMA: It’s hard to keep mental-health patients on their medications. Would it help to let them say 'no?'" published in Politico on August 9, 2017.

We’d also like to respectfully remind you the reason the US Department of Health and Human Services Interdepartmental Serious Mental Illness Coordinating Committee exists is that we, the family members of the 4%, along with Representative Timothy Murphy, Representative Eddie Bernice Johnson and her 206 fellow cosponsors of the “Helping Families in Mental Health Crisis Act,” decided to speak out and get real about serious mental illness and the horrific suffering, death, and criminalization of our loved ones.

Please read the gut-wrenching comments (attached) sent in to Teresa Pasquini’s “Shattering Silence” campaign (https://www.change.org/p/mary-gilberti-and-nami-board-of-directors-join-families-advocates-of-the-4-in-shattering-silence-about-serious-mental-illness). You’ll see that many of our loved ones are homeless, jailed, tortured in solitary confinement, committing suicide, and being brought out of prison in body bags. 

Approximately 50% of individuals with schizophrenia, and 40% with bipolar disorder have symptoms of anosognosia, or a lack of insight into their illness. Anosognosia is the single largest reason why people with schizophrenia and bipolar disorder refuse medication or do not seek treatment at all. 

We acknowledge that, with treatment, some people are able to regain insight into their illness and accept treatment. However, as many as 50% of those with schizophrenia and bipolar disorder never do. 

One example of the 50% who don’t ever regain insight is Jeanne Gore’s son. He has schizoaffective disorder and has been hospitalized 43 times over the past 13 years. All but one of those hospitalizations was involuntary because he has no awareness of his illness. He’s been jailed twice, homeless, missing, and beaten up by police and members of the community. When Jeanne got AOT legislation passed in Maine, she was finally able to see her son living successfully in the community. He’s an artist and a musician with a brilliant mind and a generous heart who is now in his own apartment living a good life. As long as he has a court order for treatment, he’ll continue to take medication, all the while insisting that he does not have a mental illness. 

Joy Torres, who suffers from schizophrenia, is a consumer and a family member with children who also have schizophrenia. She says,”Being forced to take my medication saves me and all around me. Not being forced would be life threatening.”

Let’s look at the facts:

Prevalence and Treatment Rates*

  • 8.1 million adults with schizophrenia or bipolar disorder mental illness (3.3% of the population)+
          5.4 million — approximate number with severe bipolar disorder (2.2% of the population), 51% untreated+
          2.7 million — approximate number with schizophrenia (1.1% of the population), 40% untreated+
  • 3.9 million — approximate number untreated in any given year (1.6% of the population)+

Consequences of Non-treatment* 

  • 169,000 homeless people with serious mental illness**
  • 383,000 inmates with mental illness in jails and prisons
  • 50% — estimated percentage of individuals with schizophrenia or bipolar who attempt suicide during their lifetimes
  • 10% — estimated percentage of homicides involving an offender with serious mental illness
    (approximately 1,425 per year at 2014 homicide rates)
  • 29% — estimated percentage of family homicides associated with serious mental illness
  • 50% — estimated percentage of mass killings associated with serious mental illness

* Numbers and percentages of US adults
+National Institute of Mental Health, 2016
**2015 Annual Homeless Assessment Report

Would you deny treatment to someone who suffered a stroke, was having a heart attack, had Alzheimer’s disease or was otherwise incapacitated?  No. We argue that not treating those who are too sick to consent to treatment carries the potential of much greater harm than giving involuntary or, better yet, nonvoluntary treatment. 

Dominic Sisti, PhD, an assistant professor of Medical Ethics & Health Policy at the Perelman School of Medicine at the University of Pennsylvania, recently proposed a new category for psychiatric patients to justify instances of compulsory treatment.

"The current strict limitations on involuntary treatment risk allowing people with psychiatric illness to go untreated and experience worsening symptoms despite compelling evidence that they would want to be well," said Sisti. "A patient may have previously expressed a wish to be treated while in crisis—in which case, a treatment framed as involuntary is actually something else. The proposed concept of nonvoluntary treatment provides a more precise categorization of such cases."

Patients covered by this concept would include those who have expressly indicated a desire to be treated when needed, those who have been living successfully in recovery from mental illness and clearly wish to continue doing so, and those who have difficulty escaping severe drug addiction despite an evident wish to become addiction-free.

The "nonvoluntary" category could also cover patients presenting with their first psychotic episode—due to undiagnosed schizophrenia or bipolar disorder, for example—who essentially have no idea what is happening to them.

The evidence to justify nonvoluntary treatment could include advance directives already provided by the patient to caregivers, as well as testimony from family members, case managers, and primary caregivers — and even the patient's own social media posts.

The nonvoluntary treatment concept would still involve a degree of ethical risk, as the evidence of a patient's authentic wishes might be ambiguous. “But,” Sisti said, “this challenge is not much different from those found in other areas of medicine where a patient seems incapacitated and caregivers and family members must use their own judgment concerning patient care. Moreover, there is potentially much greater harm in not treating these very sick patients compared to providing nonvoluntary treatment.”

In conclusion, we’re promulgating making it easier, rather than harder, to access appropriate treatment and care.  Please reply and continue this discussion with us. We’d appreciate hearing your thoughts about 1) Treating those who are too sick to consent to treatment; 2) A nonvoluntary treatment concept.

Thank you for your service.

 Respectfully Submitted,

Jeanne Gore, advocate, mother of someone with a serious mental illness, President, Families for Treatment of Serious Mental Illness, “We Are Their Voices”  https://www.youtube.com/watch?v=Khbkifi47Ig http://www.treatsmi.org

Teresa Pasquini, Recovering Angry Mom & Co-Founder Mental Illness FACTS, Family and Consumer True Stories

Dede Ranahan, soonerthantomorrow.com A Safe Place to Talk About Mental Illness in Our Families

 Co-signers:

 Joy Torres, mother and someone with a severe MENTAL illness not a simple mental health issue, Chair of Membership, Families for Treatment of Serious Mental Illness

 Mary Murphy, a mother in Springfield Oregon

 Candy DeWitt, Voices of Mothers and Others

 Martie Rhoden Bessler, Mother and Advocate for son and others with SM

 Ray and Connie Maternick, parents of a son who struggles with SMI

 Laura Pogliano, Director, Parents For Care, Baltimore, MD

 Kathy Day, MPA, family member of 25 year old with treatment-resistant paranoid schizophrenia

Cheri VanSant, mother to adult son with bipolar disorder with psychosis in mania/anosognosia. Only after involuntary treatment was my child stable long enough to stay out of a hospital for the last two years. It took 18 years with a lot of lost cognition to make that happen. 18 lost years.

Ruth Medina, M.S. Rehabilitation Counseling, sibling of person with mental illness

Anne Francisco, bereaved mother of son who deserved treatment but got incarceration and  death

Wendy Brown, mother of a son with bipolar with psychosis and OCD

Sandra Turner, Mother of 23 year old Son who desperately sought treatment in Plattsburgh NY, was Sent Away, and dove headfirst into a freight train less than two hours later

 Diann King, a family member of a loved one with a brain disease

 Marcie Sohara, mother to a beloved son with a brain disease

 Lisa Powell, a family member of a loved one with SMI

 Dan West, Father of a son with a brain disorder

 Kimberlee West, Mother of a son with a brain disorder. Also Sister of a smi brother who committed suicide

 Laurie S. Turley, family member of a loved one with serious mental illness

 Kenneth O. Turley, family member of a loved one with serious mental illness

 Roseann Pruett, Mother of twins and widow of SMI

 Angie Geyser, mother and advocate for child with SMI

 Alison Monroe, mother of a dual-diagnosis person with schizophrenia

 Nina McDaniel, mother and advocate for Son with Schizophrenia from Oley, PA

 Janet Hays, President – Healing Minds NOLA

Amanda Woodward, PMHRN-BC, advocate for the seriously mentally ill

 Sabrina Barton, mother of a child with SMI

 Gloria Hill ,Florida Guardian Advocate, have son with serious psych brain disease

 Anthony and Cynthia Hernandez, TTT.transformingtreatabletragedies.org

 Lynn Nanos, LICSW, Mobile Psychiatric Emergency Clinician

 Sylvia Mascareno Charters, MOMI of Florida, son with bipolar with psychosis

 Susan Inman, family caregiver

 Helen Rees, RN, psychiatric nurse and advocate for the seriously mentally ill

 Heather McKenzie, Mother, Mental illness advocate

 Ruth Johnston, mother of incarcerated schizophrenic son

A SHORTLIST OF SOLUTIONS FOR THE 4% WITH SERIOUS MENTAL ILLNESS (SMI) by Dede Ranahan

From my presentation to Covered California today, August 23, 2017.

SAMHSA: One in five in the US suffers from mental illness. One in 25 suffers from serious mental illness (SMI) such as schizophrenia (1.15%) and severe bipolar disorder (2.2%).  Of the 4% with SMI (11 million), 40-50% have anosognosia or lack of insight into their illness.

In no particular order:

  • Reclassify SMI as brain diseases or neurological illnesses so the affected can receive integrated psychiatric/primary care and coverage in the physical health system. Just like Parkinson's, Alzheimer's, and dementia.
     
  • Use Assisted Out Patient (AOT) treatment programs delivered with care and compassion. 
     
  • Cut county mental health programs that don’t directly serve the needs of the SMI. I.e. wasteful and ineffective stigma campaigns. Make bussing out of county illegal.
     
  • Rename the system “Mental Illness System.” Mental health and SMI are not the same thing.
     
  • Reconcile the Medical Model (meds and beds) and the Recovery Model (peer support and social services). Make evidence-based programs compulsory for each model.
     
  • End the Institutes of Mental Disease (IMD) Exclusion which limits beds.
     
  • Change Medicare’s 190 day lifetime cap on psychiatric hospitalization.
     
  • Amend outdated and confusing HIPAA laws that prevent families and caregivers from helping their loved ones. Allow caregiver evidence of “best interest.” Pass a Caregiver Rights Bill.
     
  • Require law enforcement to receive and investigate reports from family and community members. Require Crisis Intervention Training (CIT) as routine training.
     
  • Increase FACT (Forensic Assertive Community Treatment) teams to help ill persons remain in treatment during parole and probation.
     
  • Provide beds in facilities that offer long-term psychiatric care. California Hospital Association: 50 mental health beds are needed per 100,000 people.
     
  • Enforce the Mental Health Parity and Addiction Equity Act of 2008, including parity for the 4% on Medicaid. (The 4% don’t receive “essential benefits” under the CA WI Codes.)
     
  • Stop dumping the SMI into jails and ERs. Treatment and Advocacy Center 2014 study: Mentally ill inmates are ten times the number of patients in psychiatric hospitals. 
     
  • Eliminate the inhumane standard — “Must be a danger to self or others” before intervening.
     
  • Encourage family advocacy groups and consumer advocacy groups to work together.
     
  • Create supported housing, employment, and education.

 

Photo credit: Michael Toy

Photo credit: Michael Toy