100 families travel to Washington, D.C. to ask congress to support "The Helping Families in Mental Health Crisis Act"

Mental illness awareness discussed in Washington, D.C.

On May 20, 2015, nearly 100 families and advocates affected by serious mental illness participated in a press event on Capitol Hill hosted by the Treatment Advocacy Center, a nonprofit dedicated to eliminating barriers to treatment for people with severe mental illness.

"I was honored to be among  3 delegates attending from Kentucky. At times, it was overwhelming to be among so many heroes."

Maggie Krueger - Columbia, Brenda and Jim Benson - Murray and GG Burns - Lexington; joined families from Maine to California  … all sharing the same painful stories of how our loved ones are unable to receive treatment before tragedy.  

Maggie shares a carabiner with Congressman Ed Whitfield in 
his office in the Rayburn Building in Washington, DC. Brenda Benson shares
the pain her family has endured trying to keep her son safe and in treatment.

Maggie Krueger said, "When meeting with my Congressman, Representative Ed Whitfield, I focused on the mental illness initiatives I was there to support and presented him with a carabiner. Peculiar gift, you might think. Let me explain. Carabiners are metal safety clips used in mountain climbing and other high risk ventures - to link and to anchor. May I suggest that we have a mountain of compromised systems to travail. No one person or organization can go it alone. No one event will be successful in turning the tide; no one will get everything they want. So we need to look for anchors and connections - people and organizations of like mind and mission to safely make the ascent." 

Brenda Benson said, "It was an honor for my husband and me to be included in the Treatment Advocacy Center Summit on Mental Health in Washington, DC.  While there we were able to meet with Congressman Ed Whitfield in the 1st district of the House of Representatives.  We shared with him how difficult it has been for our family to find and access quality evidence based mental health care in our community.  We asked for his support of “The Helping Families in Mental Health Crisis Act” to be re-introduced soon.  We are pleased that Congressman Whitfield has shown his support in the past.  Congressman Whitfield co-sponsored “The Helping Families in Mental Health Crisis Act” in 2014.

While meeting with Congressman Whitfield, GG explained the state NAMI organization has work collaboratively with many state agencies to pass a revised AOT law that would help the sickest individuals with brain disease who lack capacity to understand the need for treatment.  GG explained she frequently receives calls from families in crises across Kentucky, in all districts and how important “The Helping Families in Mental Health Crisis Act" will be in assisting states like Kentucky to utilize existing laws, as well as providing a more humane outpatient treatment law such as Tim's Law, expected to pass in 2016.  AOT in Kentucky would saves lives, save state general funds and would provide a least restrictive environment.  GG shared her own personal story of her son's long history and how the system continues to fail him each year as he's trapped in the revolving door, never receiving treatment long enough to reclaim his life, because the agreed orders are for only 60-days.  The behavioral health system sets up young adults like my son to fail.  

GG also met with Francis Brooke, legislative assistant for Congressman Andy Barr, (6th district House of Representatives). Congressman Barr also co-sponsored  Tim Murphy's Helping Families in Mental Health Crisis Act in 2014.  GG said, "This landmark bill will unravel a broken system and address barriers to treatment for those who need it the most.  Our loved ones deserve a right to treatment, a right to be in their right mind … and to receive treatment before tragedy." 

Families joined together by tragedy in their lives, L-R, Laura Pogliano - MD, Donna Pitts - IL, GG Burns - KY and Marla Durkin-Pope - AL. 

The press conference brought out congressional staffers and journalists for a candid discussion on mental health reforms. Anthony Hernandez, father of Aaron Hernandez, 19, spoke to the audience about the struggles he and his wife, Cynthia, endured when trying to get Aaron help for his mental illness. Anthony described how they frequently encountered bureaucratic red tape – including restrictive HIPAA laws – that held them back from helping Aaron seek mental health treatment. In a psychotic state, Aaron stabbed his mother and father and is currently held in prison. Now, Anthony is working every day to urge lawmakers to support and sign onto the Helping Families In Mental Health Crisis Act. 

View live report from ABC12: Your Trusted Source! WJRT-TV here: 

“Why did it have to come to this?” Anthony asked the audience. “Why wasn’t I given the authority over my sick son, to get him the treatment he never realized he desperately needed?”

Congressman Murphy, who plans to reintroduce his landmark Helping Families in Mental Health Crisis Act shortly, told family members and advocates to press their local members of Congress to pass his legislation so no more families have to experience the heartbreak and pain of seeing their loved ones fall through the cracks of our country’s broken mental health system. 


“Mental illness doesn’t know any boundaries here. No matter your race, gender, income level, political party, age, it doesn’t care,” Murphy said to NBC News. “Mental illness is a disease, and we must treat it as such: attack it like a cancer, or diabetes,” said Murphy . “Diagnosis should not be a lock; it is a key.” 

Read short summaries of the stories told here:

Anthony Hernandez, California (statement)

Jennifer Hoff, California (statement)

Candie Dalton, Colorado (statement)

Teresa Pasquini, California (statement)

Michele Hicks, New York (statement)

Pamela Blodgett, Rhode Island (statement)                              



The above information was copied from Congressman Tim Murphy's Website: http://murphy.house.gov/latest-news/icymi-murphy-stands-with-families-affected-by-serious-mental-illness-urges-reforms-to-systems/

Thoughts from a Kentucky Mental Health & Prison Reform Advocate – how do we measure our progress?

By: Maggie Krueger, guest blog post

Recently, while helping our daughter with her science homework, I was reminded of the simple equation for work done.

Work Done = Force X Distance.

If a force is exerted but no distance moved then no work has been done.

We may feel very fatigued pushing against that which we have tried to move, but energy was only expended within our own bodies with no result.

This seems to sum up a lot of what I have been feeling lately regarding my participation in various advocacy activities. Much time is given (texting, phone calls, attending meetings, driving great distances across the state, educating myself by reading articles, serving on boards, etc.) But how do I determine if any work has been done? I feel fatigued; as I'm sure most do in trying to move this mountain of prejudice against our loved ones. Do I see results from this fatigue? How would I measure it? In the number of Facebook groups I belong to or the friends I have? Should I concentrate on the number of meetings I've attended, miles driven - all measurable.

I think I need to measure with the end in mind: what reduction has there been in police shootings of the seriously mentally ill? What mental health treatment are prisoners given? 

What is the reduction of people with mental illness in our court system? We can start by getting Crises Intervention Training, (CIT) training for our law enforcement officers  —   but how do we measure the results?

I need to look at numbers and feel accomplishment in the fatigue I am feeling.

NOTE: Maggie is a tireless advocate for those with brain diseases, we refer to as “the voiceless” – the ones who often end up trapped in the justice system, in homeless shelters and abandoned by the broken behavioral health system. Maggie is currently the President of NAMI Somerset, volunteers for the Kentucky State Interagency Council (SIAC); the Behavioral Health, Developmental and Intellectual Disabilities Planning and Advisory Council; serves on the Board of Directors for Kentucky Partnership for Families and Children, is a certified Family Peer Support Specialist, participant on the NAMI Kentucky Advocacy Advisory Committee and the steering committee for the homeless initiative in Somerset. Wow, small wonder Maggie is tired. If Kentucky had more advocates like Maggie, who actually walks the walk and not only talks the talk … we’d make changes in moving the mountain sooner. GG Burns

ASSISTED OUTPATIENT TREATMENT DEEMED AN EVIDENCED-BASED PRACTICE BY SAMHSA

Acknowledging a substantial body of research, the federal agency that oversees mental health services and substance abuse treatment has recognized court-ordered outpatient treatment as an evidence-based intervention for people with severe mental illness who struggle with voluntary treatment adherence.

The Substance Abuse and Mental Health Services Administration (SAMHSA) last week added the practice commonly known as assisted outpatient treatment (AOT) to the National Registry of Evidence-Based Programs and Practices (NREPP).

“The federal agency charged with coordinating programs for adults with mental illness reviewed the evidence and found that AOT is an evidence-based intervention for reducing the dire consequences of nontreatment like repeat hospitalization, violence and suicide,” said Doris A. Fuller, executive director.

“Policymakers have another clear signal that passing and implementing AOT is a reasonable means of improving outcomes for people with severe mental illness,” the executive said.

AOT provides court-ordered treatment in the community to people with serious mental illness and a history of treatment non-adherence and commits service providers to delivering appropriate care to the most high-risk, high-need individuals. The federal agency added outpatient commitment to NREPP after an independent assessment concluded the program met its requirements for demonstrating positive outcomes in multiple, rigorous peer-reviewed studies.

The value of the intervention for qualifying individuals is also recognized by the American Psychiatric Association, the National Sheriffs’ Association and the International Association of Chiefs of Police.

SAMHSA’s designation follows recognition of AOT by the US Department of Justice, whose Office of Justice Programs deemed it to be an effective and evidence-based practice for reducing crime and violence in 2012. Forty-five states and the District of Columbia currently authorize the use of some form of court-ordered outpatient treatment for individuals with the most severe psychiatric diseases.  

“This impartial assessment adds further weight to the voices of advocates across the country seeking to implement AOT laws to save lives,” said Fuller. “Far too many communities face tragic outcomes because of a failure to effectively use this common-sense solution to serve those who are most severely mentally ill.”

The National Registry of Evidence-based Programs and Practices is a publicly available online database of mental health and substance abuse interventions. To be recognized as evidence-based, interventions must meet NREPP’s requirements for review and be independently assessed and rated for quality of research and readiness for dissemination, according to the agency’s website.

Read more here:http://www.treatmentadvocacycenter.org/about-us/our-blog/101-ma/2821

HB65 would have been a way out of the revolving door, by Michael Gray

Thanks To Michael Gray for his leadership and for this well written explanation of HB65 in Medical News MD. Other than this blog, Michael's article was the only information published about HB65 in media outlets.

The fact that the Appropriations and Revenue committee used the cost of public defender hearings, as an excuse to derail this bill - indicates how much education is still needed regarding this humane solution to stop the revolving door.

When has “outpatient” treatment ever cost more than inpatient?  GG Burns

******************************************** 

"Even though HB65 died in the Appropriations and Revenue committee in Frankfort last week, we will be back next year to advocate for better treatment options!"  - Michael Gray

Michael Gray is executive director of NAMI Louisville, March 5, 2015

New treatment method gives mentally ill a chance at recovery while living independently, with family or in supportive housing.

There are a variety of treatment options for severe and persistent mental illness, but many people experience symptoms so great they are unable to access healthcare services voluntarily. They often end up homeless, incarcerated or involuntarily hospitalized, none of which provide long-term solutions to their symptoms or treatment for their illness.

Assisted outpatient treatment (AOT) should be an alternative to those worse-case scenarios. It allows people who would otherwise cycle in and out of the criminal justice system and short-term hospital stays to receive long-term treatment while remaining in the community. 

Community Based Option

AOT is a process where a person’s family, friends and mental health providers can work with the court system to determine the least restrictive means of treatment. It is only suited for people who have the most severe symptoms of mental illness and are often unaware that they need treatment.

Without intervention by their families and the courts, these individuals can end up homeless, incarcerated or victimized as a result of their symptoms. AOT provides a way out of the revolving door of ineffective outcomes by taking patients out of this cycle and giving them a chance at recovery while living on their own, with family or in supportive housing. 

Read more here: http://www.medicalnews.md/a-way-out-of-the-revolving-door/

Reproduced with permission from Medical News, LLC

Vol. [ Copyright or [March 2015]] www.medicalnews.md

Help us pass HB65 - Tim Morton ACT

TOLL-FREE MESSAGE LINE TO LEGISLATORS: 1-800-372-7181 

I alone with many others, have advocated for a revised and "more humane outpatient treatment law" to replace the KRS202A.081, for over 5 years. HB65 is the 5th bill that has been sponsored in the past 3 years and is the combination of HB221 and SB50 from 2014. 

It has been debated and chiseled into a bill that Ky's mental health agencies have adopted to support in the 2015 general assembly … including the support of the Kentucky Mental Health Coalition KMHC, (with over 90 statewide agencies including NAMI Kentucky.)  

For more information why HB65 it has been renamed after Tim Morton, click here: http://changementalhealthlawsinky.blogspot.com/2015/02/hb65-would-have-given-my-son-tim-right.html

ADVOCACY ALERT

from NAMI Kentucky and KMHC

YOUR CALLS MAY DETERMINE THE LIFE OR DEATH OF THIS BILL

I can't emphasize enough how important it is for you to make calls or send emails.

1. Over the weekend and on Monday: To House A and R Committee: Please hear HB 65 as soon as possible and vote passage with amendment that removes fiscal concerns.

2. On Monday and Tuesday: To House Leadership: The fiscal concerns about HB 65 have been resolved. Please move the bill quickly through A & R and a vote in the House!!

3. Once the bill is heard in A and R: To All House Members, Please pass HB 65 to improve mental health treatment for those with serious mental illness.


Feel free to talk more about the bill if you wish. We just need to let them hear from lots of us.

TOLL-FREE MESSAGE LINE TO LEGISLATORS: 1-800-372-7181

LEGISLATORS' FAX NUMBER: 1-502-564-6543

THIS IS THE HOUR!!! THIS IS THE TIME!!
Ella Hunter
NAMI Kentucky
Public Policy and Research Chair
859-338-2517 (Call if you have any questions)

*******

2/27/15:  IMPORTANT INFORMATION – UPDATE ON HB 65 – OUTPATIENT TREATMENT FOR INDIVIDUALS
WITH SEVERE AND PERSISTENT MENTAL ILLNESS

As you all know, HB 65 passed the House Health & Welfare Committee unanimously on 2/12/15 and we thought it was headed for a quick passage by the full House, as it was placed on the Consent Calendar.  Unfortunately, nature intervened with snow, ice and cold…and the House did not meet during the week of 2/16 – 2/20/15.

On 2/25/15, we learned that the bill had been taken from the Consent Calendar and sent to the House Appropriations & Revenue Committee (never a good sign).  Our bill sponsor, Rep. Burch, immediately went to work to find out what had caused this reassignment and we learned that a significant fiscal impact had been described by the KY Department for Public Advocacy (public defenders).

Yesterday morning, there was a meeting with Ed Monahan (Director of DPA), his assistant, Damon Preston, Chairman Burch and his assistance Tom Schwab, the LRC Budget Reviewer, Steve Shannon and me.  It was a long and intense meeting as we tried to resolve the legitimate concerns raised by DPA around the AOT portion of the bill.  We, of course, made the arguments that public defenders would likely be dealing with these individuals with SPMI anyway and that we were trying to have that intervention be before hospitalization, rather than during or after! 

Chairman Burch was very strong in his resolve to move the bill out for passage, stating that we needed to put some new approaches into practice here in Kentucky to address these unmet needs.  Steve and I weighed in strongly as well, that we had defined this approach narrowly and it needed to be tried.  One of the major concerns expressed by DPA was that currently, they handle MIW cases in 7 District Courts (counties) across the state, not in all 120 counties.  They estimated that they would have to add a significant number of public defenders to provide statewide coverage…hence, the cost impact which would kill the bill.

A compromise was reached which, when amended to the bill, will remove the fiscal impact statement and allow the bill to go forward.  The AOT portion of the bill (old SB 50) will be implemented in the following counties:  Boone, Christian, Fayette, Hardin, Jefferson, Kenton and Perry.  These counties cover approximately one-third of Kentucky’s population and allow DPA to use their attorneys who are already covering cases at ARH, Central State, Eastern State, and Western State hospitals.  We also agreed to add to the criteria that AOT would be available to individuals who have previously been hospitalized (a condition in most of the other AOT laws).

A bonus in amending the bill at this point in time is that we can name it the Tim Morton Act in loving memory of Tim and as a tribute to the incredible advocacy of Faye Morton and her family.

Next Steps:  The bill needs to be heard (briefly) in the House A&R Committee so the amendment can be made and the fiscal impact removed.  That should happen on either Monday or Tuesday.  We will need to get the bill heard and voted on in the House ASAP after it is moved out by A&R.   Once out of the House, we will have to move it very quickly (hopefully) to Senate Health & Welfare and then out of the Senate.  Time is our big enemy at this point…but there is still sufficient time to get it done!

Thank you for your tremendous advocacy on this important bill!    

Sheila

Sheila A. Schuster, Ph.D.

Advocacy Action Network

120 Sears Avenue, Suite 212

Louisville, KY  40207

502-894-0222 phone

kyadvocacy@gmail.com 

www.advocacyaction.net  

Letters of support for HB65 pour in from families across KY

I would like to urge each of you to become familiar with and support the passage of HB65 - sponsored by Representative Tom Burch. This bill, relating to court-ordered outpatient mental health treatment, would vastly improve our current system of treating the mentally ill, which is to "warehouse" them in jails when they refuse to be treated.

As the parent of a 36-year old daughter who was diagnosed with Bipolar II and Severe Anxiety Disorder in 2001, I can attest to the toll it takes on those of us who act as caregivers for loved ones who suffer with a mental disorder. More importantly, our current system prevents thousands of mentally ill individuals from receiving the treatment they need in order to deal with their disorder.

Please consider the financial savings that can be realized by having a "system" in place to treat those who, because of their illness, are unable to commit themselves to treatment. Rather than "storing" these individuals in jails, where they cost the taxpayers huge sums of money, do not receive treatment and, when released, find themselves back on the streets where they are soon re-arrested and the cycle continues, let's establish an Assisted Outpatient Treatment (AOT) System which works to help those who suffer from these horrible diseases.

I urge you to let Kentucky follow the lead of North Carolina, New York, Ohio and California in providing Court Ordered Assisted Outpatient Treatment for our mentally ill. Treatment before tragedy...It's the right thing to do.


Sincerely,

Larry C. Souder

Colonel, USAF, Retired
 

My daughter is missing and we need your help -- please pass HB65!

M  I  S  S  I  N  G

IF YOU HAVE INFORMATION ABOUT (ELIZABETH L. MORRIS)

PLEASE CALL KNOXVILLE LAW ENFORCEMENT at (865) 215-7212 

 OR CONTACT ELIZABETH'S MOTHER AT (270) 217-6637 

Date Missing: (Since 10/11/14)
Date of Birth: (04/15/81)
Age: (33)
Sex: (Female)
Height: (5 ft. 11 inches)
Weight: (250 lbs.)
Eyes: (Hazel)
Hair: (Brown Shoulder Length, Curly,
Race: (Caucasian)
Complexion: (Fair)
Clothing: (When last seen she was wearing a long brown coat with fur
collar and flip flops.)
(Left home without money, food or telephone.)

(Mother wants to help her daughter with money, insurance card and an apartment. Elizabeth doesn’t have to come home if she doesn’t want to. Mother is very worried about her safety and well-being. She isn’t in trouble with the law. She may be a little confused. Please help.

WHAT WOULD YOU DO IF ELIZABETH WERE YOUR DAUGHTER? 

My name is Janis Morris from Paducah, Kentucky. My daughter Elizabeth Lauren Morris had the onset of her severe brain disease in 2009. After 3 years, she was diagnosed with of psychotic thinking and symptomatic of paranoid schizophrenia. She has delusions and hallucinations. To make this diagnosis even worse she has anosognosia. There is damage to her brain as a result of this illness preventing her ability to comprehend that she is ill.


· She believes that the voices are God telling her what to do.

· She believes that the hallucinations are God punishing her for her sins.

· She believes that I am evil because the voices have told her so.

· She thinks that the police and I am trying to kill her

· She resented my being granted guardianship and resented my trying to get her to take her medications and stay in treatment. She baptized an individual at Western State Hospital in the shower. I was told that she baptized a man in Nashville, since she has been missing prior to his exploiting her for sex and then making her sleep outside on the door mat.

She did not want to apply for social security disability. She said, “I am smart, I have a degree and I have 10 fingers and 10 toes, so I can work and don’t need disability.” One thing about it, in spite of her illness she still tried to work and wanted me to be proud of her just like you are proud of your children.

Her illness was not that of a heart defect, her illness was not that of kidney failure or any of the physical illness that our society is working so hard to correct. No her illness is a disease of the brain. A brain disorder. I think we all know that the brain is a real important organ too. Right? Then why has our society treated it as if those individuals with mental illness are outcasts? This is something we all need to think about. I too was guilty of this thinking, prior to my daughter’s illness.

Due to her failing to realize her illness and her insistence that she would not take her medication, she left home in September 2014. My daughter last called me on October 11th of 2014. Elizabeth only made a brief statement that she wanted to make things right with me because she was getting ready to go to heaven. Then she hung up the phone. Elizabeth was last seen in Knoxville, TN and presently the police and private investigators have not had any luck in locating her. I am worried about her, how she is being treated, if she warm or hungry. I have spent thousands of dollars and have done everything in my power to find her and see that she gains the medical attention she needs with no success.

When Elizabeth was on her medication, she was much better. Elizabeth was so afraid when she was not on her medications. Elizabeth would have qualified HB65 if it were law. If it had been in place, Elizabeth would probably be in a safe and warm place surrounded by those that love her. I love and miss her so much.

Put yourself in my shoes. What if Elizabeth was your child? Or your sister? What would you do?

I believe that HB 65 would benefit individuals such as Elizabeth that are mentally ill with anosognosia. We need your help!