Thursday, February 5, 2015

Kentucky Proposes NEW outpatient treatment bill – HB65, Representative Tom Burch

Please join me in thanking NAMI KY for supporting this important legislation. A special thanks to Dr. Sheila Schuster of the Kentucky Mental Health Coalition, (KMHC) and to Representative Tom Burch for making HB65 a reality.


Talking Points and Summary for HB65


In 2010, I started a blog campaign to advocate for a law, (similar to what other states had) that would assist an individual into treatment before they became dangerous to self or others, or before their lives were ruined forever … as our son and family has experienced the past 10 years.

Two years ago, in 2012-13, Rep. Burch and Sen. Denton both sponsored identical bills that strengthen and lengthen the current community based outpatient agreed order … under the KRS 202A.081. (This law has been on the books 32 years, but has been underfunded and rarely utilized.)





In 2014, after many testimonies to the Kentucky interim joint committee on health and welfare, 2 additional bills were sponsored. They were HB 221 and SB 50. 

At the legislative advocacy day in 2014, NAMI KY asked their legislators to combine both bills and pass a compressive bill that would help people before they reached KY’s strict inpatient criteria. NAMI KY, NAMI LEX, BH providers, advocates, family members and individuals living with a brain disease diagnoses … as well as Dr. Sheila Shuster (KMHC); worked through many tedious meetings, agreeing on language. HB65 is essentially the product of those meetings.

HB65
is in 2 parts. In the first section, Part 1 [Sections 1 – 3]: the language strengthens the already-existing law (KRS 202A.081) which permits persons involuntarily committed to the hospital to be discharged on the condition that they agree to – and comply with – court-ordered outpatient treatment. In section (1 an alternative sentencing is provided, with mechanism that will help connect the system to the patient.  In (2) AOT allows someone to live in the community under a court order.  Other additions to the first section are as follows:



•  Added … a peer support specialist or other supportive person present and “MAY” be asked to support the patient during this process.

•  Another addition added to HB 65 is: it renames this outpatient commitment process “a patient agreed order”.

•  In [Section 1 (4); p. 1] Requires the Department of Public Advocacy (DPA) to assign an alternative sentencing social worker to develop a treatment plan in collaboration with a community mental health center.

•  [Section 1 (6); p. 2] Requires the court to appoint a case management service or team employed by a community mental health center to monitor treatment and the patient’s compliance with the treatment.

•  [Section 1 (7); p. 2] It requires that the case management service or team report on the person's functioning, recommend community support services, and assist the person in applying for social services. [This is an important section, as it connects the CMHC to the patient, that may be unable to access housing or basic needs without a MSW.]

•  [Section 1 (7); p. 2] It requires that the case management service or team is available 24/7 and is adequately trained.

•  [Section 1 (8); p. 2] It requires that treatment providers use evidence-based practices as defined.

•  [Section 1 (9); p.2-3] Provides that failure to abide by the treatment plan may result in the patient being re-hospitalized if the hospitalization criteria are met, procedures are initiated via affidavit by the case management service or team, and that a mental health examination of the patient take place at a community mental health center.

•  [Section 1 (10); p. 3] With due process, permit the agreed order to be extended up to 3 additional orders of 60 days (total of 180 days) each after a hearing is held, with the same procedures and safeguards as for the initial hearing.

•  [Section 1 (11; p. 3] requires that services provided to the patient under the agreed order are covered by Medicaid.

•  [Section 1 (12) p, 4] Requires that the courts report each patient agreed order to the Cabinet. [This is very important, because in all my research as to why people can’t access OT … I learned that the state has never collected adequate data on the number of people who had actually received a community based outpatient agreed order.]


The most important part of HB65 is public safety. It will save lives. 
“It’s better to be ordered to receive medical help, access to resources, housing, etc., in a least restrictive environment ... than forced to become a criminal, trapped in jail/prison where a person will lose all civil rights, and will still not receive treatment.”



SHORT VERSION SUMMARY OF 2nd SECTION of HB65


This bill creates new “outpatient” language and makes it possible for a provider or family member to commit an individual, who has anosognosia to outpatient services. This is the new section that would provide a person treatment before tragedy instead of waiting until they are homicidal, suicidal or become a felon; sentenced to long-term imprisonment. (In which case, they will lose all civil rights and not likely to receive treatment.)



New outpatient criteria in Section 6: 


Section 6.  New
·    No person shall be subjected to court-ordered AOT unless she would otherwise:
o   1) present a threat of danger to herself or others;
o   2) cause severe mental, emotional, or physical harm;
o   3) have significantly impaired judgment, reasoning, functioning, or capacity to recognize reality; AND
o   4) have a substantially diminished ability to make informed decisions regarding his or her need for sustained medical treatment.
o   Furthermore, the patient must be unlikely to adhere to outpatient treatment on a voluntary basis based on a QMHP’s
·      1) clinical observation;
·      2) review of treatment history, AND
·      3) anosognosia.
·      The AOT must be the least restrictive alternative mode of treatment available.
Section 7.  New
·      The QMHP who examines the respondent must provide a written treatment plan that includes “reasonable opportunities” for the involvement of both the patient and anyone else she wants on board, any advance directive already executed by the patient, and evidence-based practices.

Section 8. New
·      At the hearing, respondent shall be:
o   Represented by counsel
o   accompanied by a peer support specialist or “other person in a support relationship” AND
o   “Afforded an opportunity to present evidence, call witnesses on his or her behalf, and cross-examine adverse witnesses.”
·      The court may conduct the hearing in the respondent’s absence
·      The QMHP who recommends court-ordered AOT shall testify at the hearing.
·      The court must find clear and convincing evidence that the patient meets the criteria in Section 6 of this bill to order AOT, but the court is not compelled to do so. In other words, the evidence that the respondent needs AOT must be clear and convincing to even consider issuing the order. The court can still choose not to issue the order even with clear and convincing evidence.
Section 9.  New
·      After ordering AOT, the court appoints a case management service or team employed by a CMHC who shall
o   Monitor the patient’s adherence to the order and
o   Report to the court “descriptive of the person’s functioning.”
·      The service or team shall be available 24 hrs/day
Section 10.  New
·      Failure to comply “may constitute” grounds for a physician to order a 72 hour hold.
·      Failure to comply is not grounds for contempt of court.
Section 11.  New
·      At any time during the treatment, the patient may move the court to stay, vacate, or modify the order.
·      A QMHP may move the court to change the order
o   “material change” means an addition or deletion of one of the services from a treatment plan.
·      Within 30 days of the expiration of an order, the original petitioner may petition for an additional period of AOT.
o   The procedure is the same as the first petition, except the parties may mutually agree to waive the hearing.
Section 12.  New
·      The services for the order “shall be authorized by the Department for Medicaid Services [DMS] and its contractors [MCOs] as Medicaid-eligible services and shall be subject to the same medical necessity criteria and reimbursement methodology as for all other covered behavioral health services.” emphasis added.


[Currently, even if treatment programs and resources are available for individuals with brain disease, SMI ... if the patient does not believe they are have symptoms, or has anosognosia, there is little hope they can access services. This in turn, sets the individual and the mental health system up for failure.]


See NAMI Kentucky's sample letter to the Kentuky legislature here:






Danger and Violence Reduced after Outpatient Treatment 


• 55% fewer recipients engaged in suicide attempts or physical harm to self

• 47% fewer physically harmed others

• 46% fewer damaged or destroyed property

• 43% fewer threatened physical harm to others

• Overall, the average decrease in harmful behaviors was 44%

• 74% fewer participants experienced homelessness

• 77% fewer experienced psychiatric hospitalization

• 56% reduction in length of hospitalization

• 83% fewer experienced arrest

• 87% fewer experienced incarceration

• 49% fewer abused alcohol

• 48% fewer abused drugs







Consumer participation and medication compliance improved with Outpatient Treatment 
• Number of individuals exhibiting good adherence to meds increased 51%.

• The number of individuals exhibiting good service engagement increased 103%.




Consumer Perceptions Were Positive after Outpatient Treatment 

• 75% reported that AOT helped them gain control over their lives

• 81% said AOT helped them get and stay well

• 90% said AOT made them more likely to keep appointments and take meds.

• 87% of participants said they were confident in their case manager's ability.

• 88% said they and case manager agreed on what is important to work on.

Info from: March 2005 N.Y. State Office of Mental Health “Kendraʼs Law: Final Report on the Status of Assisted Outpatient Treatment.”



Wednesday, January 28, 2015

AOT bills move forward in other states

Yesterday, Laura's Law passed in San Diego county. A handfull of NAMI advocates made a difference! http://www.kpbs.org/news/2015/jan/26/san-diego-county-supervisors-consider-involuntary-/

 NAMI Washington's call for action for SB 5649.

Read more here:


Read more here:



Joel's Law … And AOT law in WA could save lives!

Read more here:


(Feb. 4, 2015) Yesterday, the Contra Costa County Board of Supervisors voted 5-0 to implement Laura’s Law, making it the eighth county in California to embrace assisted outpatient treatment as a tool for making treatment possible for individuals with severe mental illness. 
laurawilcox“We believe it’s an investment in helping families and people with serious mental illnesses,” Contra Costa County Supervisor John Gioia said in a statement. “We’ve heard from many families (who want) an opportunity to help their own family members.”

Read more here:


Laura's Law passes easily in S.F. supervisors' vote

Easy passage belies the years of debate on implementation of state measure

Updated 7:10 am, Wednesday, July 9, 2014

Read more here:

Monday, January 19, 2015

Liza Long - "Mental illness is not a choice. But hope is."

Powerful words written today by The Anarchist Soccer Mom and author of The Price of Silence: A Mom's Perspective on Mental Illness  


All across the US, we are at a loss for words, as we share the sad news of our friend and Tb4T advocate Laura Pogliano's son tragic passing. Liza has helped us find the right words. WORDS do matter. Many times wishful thinking to decrease stigma, actually discrimaintes against those who need help the most.


‪#‎worldmournszac‬ 
My heart hurts today. My friend Laura Pogliano has lost her 22-year old son Zac, who had paranoid schizophrenia. Both Laura and Zac were tireless and passionate advocates for ending the stigma of mental illness. Their story was featured in USA Today's "Cost of Not Caring" series, where Laura described herself as a "fortunate" mother--fortunate because despite personal bankruptcy, she had been able to obtain treatment that seemed to be working for her son. This tragic turn reminds all of us mothers just how fragile life is for our children who have serious mental illness. As a parent of a child with bipolar disorder, my worst nightmare is what happened to Laura and her son.

There's a popular quote floating around mental health advocacy circles: "Mental illness is not a choice. But recovery is." I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word "recovery." When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac.

I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.





Here are five reasons I wish we would stop using the word "recovery" for serious mental illness. 






Read Liza's 5 reasons here: 

http://anarchistsoccermom.blogspot.com/2015/01/5-reasons-i-wish-we-would-stop-talking.html?m=1


Sunday, January 4, 2015

Behind the Gates of Gomorrah: An Insane Situation - interview by Julia Robb

A new book was recently published by Dr. Stephen Seager. Below are a few of my favorite quotes from an interview with Julia Robb.
"Here’s some figures: 1% of the population everywhere on earth is schizophrenic so in the US that’s 3.25 million people of which maybe 1 million or so are paranoid.
There are 50,000 state hospital beds nationally.
The real question is why aren’t they in mandatory out patient treatment?
When I said that people don’t care about the mentally ill, I wasn’t kidding. The reason foreign doctors are over represented at state mental hospitals is because most American doctors won’t do it. It’s the same reason inner city clinics are populated by international physicians as well.
 Americans don’t care about the mentally ill, so we have out-sourced their care."

Read the entire interview here: http://juliarobb.com/author/julia/

Thursday, January 1, 2015

"Shot in the Head”, by Katherine Dering - Brutally honest, can't-put-it-down-kind-of-book

By G.G. Burns, Book Review


I just finished an incredible book, "Shot in the Head”, by Katherine Dering about the Flannery family and the life and death of their dear brother Paul. Paul is blindsided by the onset of Schizophrenia in his late teens and like other families the disease impacts the entire family unit.  

Katherine does as excellent job describing the devastation we feel with raw emotion that puts the reader in the shoes of Paul as he is "institutionalize", then later released to a world of insanity much worse than his disease. 
"While picking up the pieces after Paul's Mother died, Katherine (and her eight siblings) learned how dysfunctional and fragmented the "mental health system" is. Along the way, her perception of her ill brother, Paul, changed as well."
Over the past 10 years, I have read dozens of books about “living” with serious mental illness, some by psychiatrists or psychologists, others by research scientist, family members or individuals impacted themselves. In all the books describing tragic deaths or suicides, none touched me in the way "Shot in the Head" did.

Perhaps it was because I had just left my fagile 84-year old Mother, who like Paul in his final days suffered with cancer in a nursing home. 

My Mother suffers not only with dementia, depression and social anxiety that has paralyzed her much like horrible neurological disorder, but she has also survived breast cancer this year. For years, she lived in fear of "what if a bad thing happens" and now it has. Just as Paul believed he was James Bond or he had been shot in the head. 

Another reason this book was so impactful, my son is surviving his serious brain disease with "no treatment" due to his civil rights to say no! Like Paul, he too believes he works for the FBI. 

I began reading the book on my flight home from Washington, D.C., in early September after attending the national NAMI conference, where I was delighted to meet both of Paul’s sisters, Katherine and Ilene. I believe our paths have crossed over the years for a positive reason, as I know Paul’s story will help mental health policy to change one day.

"Shot in the Head" also allowed me to develop humanity for those dying a slow painful death with “mental illness” and how at times we need hospice care, just as dying slowing with cancer. It brought me to tears and laughter   sometimes on the same page.

As soon as I read the last page, I wrote a note to Paul’s sisters on my iphone as my husband and I traveled north to Kentucky on I-75. My first message: “Thank you for writing your eloquently written memoir and for sharing Paul’s story.” My second message: “Thank you for inspiring me (and hopefully others) to write about the challenges we face."

The writing of Paul’s story inspires me to attempt the unthinkable  to write a book about my son because his right to deny treatment trumps his health. It will be a story of anosogosia or lack of insight of ones own illness is definitely not something one can easily find on a shelf or online.

Bravo to Katherine and Ilene for their efforts to help families like ours by creating Paul’s Legacy Project and for writing, "Shot in the Head"

It is a must read. 








Sunday, December 28, 2014

Anne Francisco's grief and her memory of her son ... will help others

Guest Blog post by: Anne Francisco

Did you know? The American Civil Liberties Union (ACLU) fought for the rights of those with mental illness to refuse medication to treat their illness. Josh would never have refused treatment for a major debilitating illness or injury that was located below his head. But his brain, comprised of millions of working parts, was malfunctioning. He was unable to understand that he had a brain disorder. So he refused treatment. His probation officer felt Josh's psychosis put him at great risk of hurting himself or someone else. This was just after Adam Lanza, the seriously ill young man, killed his mother first and then 20 children and 6 adults at Sandy Hook Elementary School in Newtown, CT. So the PO had Josh brought back to St. Louis, where she was sure he could get the treatment he needed. So he was taken away by police in Merced to a jail where he was punished for his anger by having to sleep the first three nights without a mattress. 

The state of Missouri sent two of their officers to California to pick him up and accompany Josh back to St. Louis where he was put in jail. It took TWO MONTHS for a psychiatric bed to open at the state psychiatric hospital where he was put in the forensic unit to await evaluation, which took 30+ days. Because he still had the right to refuse medication, Josh refused it. Paranoid and delusional, several weeks after he arrived at the hospital he used the patient telephone to call his ex-wife who reported the calls. When the evaluation was completed the judge signed an order forcing Josh to take medication which he did for 8 more months until he regained mental competency. His psychiatrist at the state hospital has told me that Josh had major depression and should have had electrotherapy treatment. When I asked why he didn't receive that treatment while hospitalized, he told me that it wasn't the hospital's job to provide treatment. 

Their responsibility was to make sure Josh regained competency. That meant forcing powerful antipsychotic injections which made Josh feel like a zombie. He had uncontrollable movement in his muscles, along with other undesirable side effects. When Josh regained competency after 9 months of being psychiatrically incarcerated, he was returned to the jail where he waited another four months for a hearing, and again exercised his right to refuse medication. If he'd been able to reapply for his Social Security Disability benefits to start BEFORE he left the hospital, he could have transitioned almost immediately to a supported housing facility which provided wrap around services to begin his recovery. When the place found out his SS hadn't been restarted they refused to take him. Because he refused medication, group homes and halfway houses refused to take him as well. THERE WAS NO PLACE FOR HIM TO GO so the judge sentenced him to prison for the phone calls he'd made while UNTREATED IN THE PSYCHIATRIC HOSPITAL. You know the rest of Josh's story which ended in tragedy when he lost all hope and saw no way out of the madness of CRIMINALIZATION that had trapped him BECAUSE HE WAS ILL.

Please remember Josh's story when Rep. Tim Murphy, the only psychologist in The U.S. Congress , reintroduces legislation in 2015 that would bring comprehensive reforms to mental health care and policy. I pray that Josh's suffering which directly resulted from the dire state of affairs for all who suffer from serious mental illness and lack the capacity to know that they need treatment will provide a clarion call to our nation's lawmakers and the people who elect them into office (that's you and me). I hope his story and the stories of so many other hurting people and hurting families will result in actions that will restore hope and life to others in the years to come. PLEASE get involved in helping to rewrite the future for others. That would bring honor to Josh's life and provide a measure of dignity to his death. Thank you all for walking beside us as we grieve the loss of Josh, a person who deserved treatment but got punishment.

My Son Killed Himself: Josh Deserved Better!Josh_Sales Specialist-1

Read Anne's story here:

Wednesday, December 17, 2014

Mental illness is the only illness that has an age limit for care: By Leisl Stoufer


Like Cody, at age 17 our son was in recovery due to early interventions and treatment that worked; plus supports and resources! 10 years later, we're surviving the broken system nightmare due to his rights to say no and a serious condition called anosognosia!" gg
original (3)

One Year Away: A Mother’s Fear

By Leisl Stoufer


1544527_10152276316586610_4574254617117970896_n
Today is his birthday and just like every kid on their birthday, Cody is excited.  He is growing up  and he knows he is  just one year away from the magical age of eighteen.  Eighteen. When Cody thinks about eighteen, he sees independence and the  freedom to make his own choices. He sees nothing but promise as he imagines the possibilities for his future.  Today he’s just one year away. For Cody this is a very happy day.

Today our son, Cody, turned seventeen.  Seventeen.
I wish I felt the same.
On one hand I do.  I  see promise.  For the first time in several years, Cody is doing well in school, he has started a part-time job so he is gaining work experience, and he is considering what life will look like after high school.  Cody is thriving. There is definitely promise.
But on the other hand, I feel dread.  Fear rises in my chest and tears sting my eyes.  I am scared. I am sad. I am angry.
Today we are one year away.  This is it.  We are running out of time.
Cody suffers from mental illness.