Wednesday, July 23, 2014

Treatment Before Tragedy is launched July 20, 2014

For the past year and a half, I have been honored to worked with a courageous group of family members and community leaders to create a new national organization called Treatment Before Tragedy, or Tb4T.

Treatment Before Tragedy was founded to advocate for better treatment, services, research and a cure for those with serious brain disease, known commonly as mental illness, and their families.




Treatment Before Tragedy members live with the consequences and impacts of untreated mental illnesses every day, and understand mental illness to be a brain disease requiring significantly more medical research. We believe that serious mental illness should receive medical treatment as a physical, medical illness of the brain, not a behavioral disorder.

Treatment Before Tragedy’s members strongly advocate for significant changes in our nation’s approach to the care and treatment of those with serious brain diseases. We support H.R. 3717, the “Helping Families in Mental Health Crisis Act,” which seeks to improve the nation’s broken mental health system by refocusing programs and resources on medical care for patients and families most in need of services. 




Become a member: http://www.treatmentbeforetragedy.org/join-us-1.html
Please follow us on Twitter: http://www.twitter.com/TreatB4Tragedy



Please join us on our Facebook page: https://www.facebook.com/treatmentbefore.tragedy

For more information, please go to:  www.Treatmentbeforetragedy.org
Or contact one of Treatment Before Tragedy’s Interim Board of Directors:

·       Asra Nomani, 304.685.2189, anomani@treatmentbeforetragedy.org
·      Joe Bruce, 207.672.4449, jbruce@treatmentbeforetragedy.org

·      Pam Norick, 301.332.3639, pnorick@treatmentbeforetragedy.org

Sincerely,  GG Burns ~ Kentucky MH advocate

Mental health programs closing across Kentucky by Mike Wynn|courier-journal.com

This report written by Mike Wynn, mwynn@courier-journal.com 
sheds light on just one of the consequences of Governor Beshear's 2010 plan to save $142 million in the cash-strapped Medicaid program within Kentucky's $6 billion Medicaid budget. 

I have overhead KY Behavioral Health leaders share with advocates, "We do not know how to help individuals with serious brain diseases, (mental illnesses) who want help, who are willing to participate in their own recovery – much less those who have anosognosia (lack insight to their symptoms) and refuse treatment, yet end up taking up large amounts of state funds revolving in and out of expensive inpatients beds or jail. What is the most humane solution and should Medicaid pay for some illnesses but neglect our state's most vulnerable? GGBurns/advocate.


But even after 13 years, Moore still worries he could slip back into despair without services like Recovery Zone, a therapeutic day program he attends in Louisville for adults with debilitating mental illness.
Without the program, "I wouldn't have anything to do," he said. "And you can get into trouble ... when you have a mental illness and there is nothing to do."
For many adults with severe and chronic mental disorders, access to such daytime therapeutic services is on a steep decline in Kentucky, leaving what some fear is a gap in care that isolates the mentally ill at home or drives them out into the streets, hospitals or jail.
The Kentucky Association of Regional Programs reports that 33 of the roughly 50 programs offered across the state have closed in the past 18 months while four others have reduced their hours by half.
That reflects a shift away from using day programs in the field of behavioral health that community mental health centers must embrace, according to the Kentucky Department for Behavioral Health, Developmental and Intellectual Disabilities.
But advocates also say the centers have struggled to get enough coverage authorized under Kentucky's Medicaid managed-care system to keep the services operating. That has forced programs to close before new services are available to replace them, they argue.
Steve Shannon, executive director of the regional programs group, estimates that closings have impacted more than 1,000 people statewide — many suffering with schizophrenia, schizoaffective disorder, bi-polar disorder or major depression.
At Seven Counties Services, the community mental health center for the Louisville region, three day programs were consolidated into one this year, scaling back services for 70 to 90 clients in Bullitt, Spencer, Shelby, Henry, Oldham and Trimble counties.
Recovery Zone in Louisville is now the only traditional therapeutic recovery program offered through the center, although Seven Counties has launched alternative recovery programs in the affected counties.
Bluegrass.org, the mental health center for 17 counties in Central Kentucky, shuttered all five of its day programs last year, each closure affecting about 35 clients.
Kelly Gunning, an advocate from the Lexington chapter of the National Alliance on Mental Illness, said those closures hit many communities hard.
"People that had a place to be in the day no longer had a place to be," she said. "We don't know where they were. They certainly weren't engaged in any therapeutic rehabilitation at that point."
Even when programs are doing well, some patients aren't getting access, according to care providers.
At Bridgehaven, which offers psychiatric rehabilitation and recovery services in Louisville, about two dozen clients either had to discontinue programs or were turned away in the past 18 months because of problems getting the services authorized through Medicaid managed-care, said Ramona Johnson, the organization's president and CEO.
Recovery or status quo?
Therapeutic rehabilitation programs typically involve a mixture of group therapy, life skills training, and professional assistance with symptoms and medication management.
Clients attend several days each week, providing a full day of interaction with therapists, social workers and others with mental disorders.
Gunning said families count on the programs for respite, and for people with severe mental illness, they provide "someplace to be, something that gives meaning to them."
Dennie Carpenter, a 54-year-old with schizoaffective disorder who participates in Recovery Zone, said the program has been a "life saver" and that interacting with others reminds him that he is not alone with his illness.
"When they cut programs like this, you go home and you just dwell on negative thoughts," he said. "The next thing you know, you get angry. And the next thing you know, it can get out of hand."
Yet, according to Dr. Allen Brenzel, medical director of the Department for Behavioral Health, the field of behavioral health has been shifting away from day programs, which he described as an indefinite intervention that "actually leads people to staying in the status quo."
Brenzel argues the field has become more focused on "recovery oriented" models that emphasize vocational rehabilitation and seek to keep people living and working in the community rather than congregated in a single setting.
Every center in Kentucky received state funding in 2013 to set up new services such as case management, job coaching, in-home support and psychiatric aid, he said, adding that the goal is to push intensive services out to the patient rather than bringing them into facilities and day programs.
"I'm optimistic that we are building a more robust system with a greater variety of services that match the individual's needs rather than making the individual match what we offer," Brenzel said.
Still, critics say there's been no policy discussions about discontinuing therapeutic rehabilitation programs or any coordinated effort to ensure a successful transition.
Instead, they argue that services previously covered under Medicaid were increasingly denied after Kentucky expanded Medicaid managed care in 2011, contracting with outside firms to run the system and save taxpayer money.
"The programs were closed because the (Medicaid companies) weren't paying for them any longer," Shannon said. "All that took place before new services were available to meet the need."
Shannon said that while he supports the recovery-oriented service model, he questions why the state still counts therapeutic rehabilitation as Medicaid-eligible service if it wants to shift to new programs.
Paul Beatrice, president and CEO of Bluegrass.org, also said if the Medicaid companies want to shift coverage for services, they should work with community mental health centers to develop alternatives and time schedules for the transition.
"It would be nice to participate in the planning of that because it's the consumer who ends up paying the ultimate price," he said.
'OK for years'
Of the four companies that run Kentucky's Medicaid system, mental health advocates say Coventry Cares — and its subsidiary MHNet — are by far the worst about denying coverage or reducing hours for therapeutic day programs.
Coventry and MHNet are owned by insurance provider Aetna, which reported $1.9 billion in net income last year. But the company says complaints are off target and that it is committed to providing patients with high-quality care.
MHNet has approved two-thirds of the requests it received for therapeutic rehabilitation since January 2013, Aetna said in a statement.
But Shannon said that even mild reductions — such as approving services for three days a week rather than five — can wreak havoc on a program's financial viability.
He also argues that centers may have stopped requesting services once they realized that MHNet would not approve them.
Marsha Wilson, vice president of adult mental health services at Seven Counties, points out that the two programs Seven Counties closed this year "had been doing OK for years" before the changes in Medicaid.
Taking up transition
Seven Counties says it has tried to be proactive by transitioning rural therapeutic rehabilitation programs into recovery support centers, which focus on education, vocational work, peer support and community living skills.
Seven Counties has used state money for the effort since Medicaid doesn't cover the services, and about 70 percent to 75 percent of former therapeutic rehabilitation clients participate in the recovery support centers.
Kimberly Brothers-Sharp, vice president over Seven Counties' rural services, said the new programs offer fewer days and less structure than the traditional day programs but that many clients have still "benefited greatly" from the services.
In Lexington, NAMI partnered with Bluegrass.org to create Participation Station, a peer-run recovery program that provides educational and life-skills training to about 40 participants.
Gunning, from NAMI, said that effort has absorbed most of the people from the closed therapeutic rehabilitation program in Fayette County, but she cautioned that surrounding communities do not have similar services in place.
Shannon said most people who participated in the shuttered day programs are likely still receiving some form of case management and outpatient therapy.
"But they aren't getting that day program every day, and there is not someone seeing them everyday to see how they are doing," he said.
Shannon said he hopes programs like Participation Station will help replace the day programs around the state. But, he adds, it's unclear whether Medicaid managed care companies will pay for such services.
Sheila Schuster, an advocate for mental health and public health programs, warns that the state with face costs from caring for the mentally ill either way.
"You can either take care of them in an outpatient setting where they are in the community and learning a job," she said. "Or you can take care of them in an institution and we are all going to be paying through the teeth."
Reporter Mike Wynn can be reached at (502) 875-5136. Follow him on Twitter at @MikeWynn_CJ.
read more here and view videos on the Courier Journal:

http://www.courier-journal.com/story/life/wellness/2014/07/18/mental-health-programs-closing-across-kentucky/12860897/

Wednesday, July 2, 2014

"lets not separate the brain from the body" ~ House Bill 527

Better strategies aimed at mental health in Ky. could improve health, economy and public policy
06/10/2014 07:55 PM
Knowing how to identify and properly treat mental illness could spark the single biggest shift in bringing efficiency to the health care system while improving Kentuckians lives, two experts said.
Currently Kentucky spends 4 percent of the $3 billion dollars in Medicaid managed care on mental health programs. But an estimated 40 percent of Medicaid enrollees have mental illnesses or issues — many that go undiagnosed, according to the Centers for Medicare and Medicaid.
Kentucky, unlike states like Colorado , hasn’t tracked how undiagnosed mental health issues, like depression or bipolar disorders, fuel other medical costs or spill into the school system in the form of behavioral problems — or fill up jails and prisons.
But Rep. Jimmie Lee, D-Elizabethtown and the chairman of the House budget panel that deals with health programs, said if Kentucky can get its approach to mental health right it would have broad effects across the board.
“The savings itself would promote the expansion of the system without having any additional revenue,” Lee said (at 3:40).
Lee and Steve Shannon, executive director of the Kentucky Association of Regional Mental Health Programs, said the health care system — and government-funded Medicaid — could save money by treating patients for physical and mental issues at the same location. Shannon said it’s like the “fram oil filter” model of pay now or pay later. It is time for the mental health system to pay early to avoid later costs, he said.
“Lets pay now and lets pay less now,” Shannon said (at 4:30). “Lets look at the whole person and lets not separate the brain from the body so when someone goes, lets really understand what is happening when they see a doctor and have that doctor realize ‘maybe this person does need to see a clinician.’”
The General Assembly passed a bill this session, House Bill 527, that would allow mental health centers to provide physical care by hiring a doctor or nurse practitioner — something both Shannon and Lee believe will help. But Shannon said people with mental illness die 25 years younger than the average age of death from preventable illnesses because they don’t get the care they need.
Shannon said dollars could be spent more wisely by looking at spending in areas like the corrections system.
“How much dollars are we spending in the corrections system for folks who could be in the community, never go to the corrections system, and never be seen there but be treated here and not have a record that reduces housing opportunities and employment opportunities, all those negative consequences,” Shannon said (at 6:30).
As for how the Medicaid managed care companies are handling mental health patients, Lee said representatives from the managed care companies have told him they will be changing the way they do business because it is effecting their bottom line. (See that conversation starting at 11:00 in video above).
Other bottom lines are affected by the way the state handles mental health as well. Lee said the state will have a budget shortfall for available behavioral health funds. And Lee and Shannon agreed any money saved through efficiencies in behavioral health needs to stay in behavior health and not be diverted else where as it has been in the past.
“That’s got to stop,” Lee said (at :30 in video below). “We can not treat and work with this population if you’re not going to let me or the folks that work with these dollars to keep those dollars within this budget in order to be able to expand on what we saved.”

Tuesday, July 1, 2014

Patrick Kennedy Visits Mentally Ill Inmates Of Cook County Jail, Largest Illinois Mental Health Facility

Legislators ask, "Where do we find $$'s to monitor 'patients' who need AOT?" Disablity Rights advocates say, "It is inhumane to lock up individuals with mental illness!" 

Yet places like Cook County Jail are recreating their own mental institutions ~ even growing food in gardens just like the assylms did years ago. Imagine what our world would be like if we didn't punish people for having a brain disease? 



This article is a must read! http://www.huffingtonpost.com/2013/09/20/patrick-kennedy-cook-county-jail_n_3964699.html?utm_hp_ref=fb&src=sp&comm_ref=false

"The number of people here talking about hearing voices and seeing things, it's hard for me to accept that we as a society can't make a better distinction between someone who made a decision that is reprehensible and you want to punish it versus someone who is ill and acts out that illness through symptoms we deem criminal behavior. Then we treat them in a prison as opposed to where they need to be treated: in a mental health clinic."
Kennedy said improving treatment -- and ultimately, perception -- of mentally ill Americans is a civil rights issue.

Saturday, June 28, 2014

Shooting Spree Inspires Call For Mental Health Reforms

Mental illness is a medical emergency
Published 3:09 pm, Friday, June 27, 2014



In the nearly year and a half since I have been investigating America's broken mental health system — even with my 30-year background in clinical psychology — I have been shocked to learn just how much our country has failed those with severe mental illness.
Take Elliot Rodger, a 22-year-old whose instability was known but went overlooked before he killed six college students and himself in California last month. Or take Gus Deeds, another young man who was in mental health crisis, but was denied extended inpatient care before he killed himself and stabbed his father, a Virginia state senator. There was Adam Lanzain Connecticut, Jared Loughner in Tucson, James Holmes in Aurora, Aaron Alexis at the Washington Navy Yard, and on and on.
Shooting Spree Inspires Call For Mental Health Reforms: Friday's stabbing and shooting spree in Santa Barbara has renewed the debate over how and whether to require people with serious mental illness to get psychiatric care. Many families and advocates for people with serious mental illness say the country needs to reform its standard for civil commitment, which allow people to be hospitalized against their will. Doris Fuller, executive director of the Treatment Advocacy Center, said changing these laws could help provide treatment for people like Elliot Rodger, the 22-year-old police say stabbed or shot six people to death near the University of California-Santa Barbara.??

All had untreated or undertreated serious mental illness. All were essentially known to the mental health system, had the benefit of early identification and intervention, and yet all spiraled out of control because the basic tools to help in a crisis were missing.
"The status quo is not just uncompassionate; it is inhumane."
While these are extreme cases, they highlight how our broken system does not respond until after a crisis when we could be doing something to stop it from happening. Even in the face of tragedy, we are too uncomfortable to acknowledge the facts because the last bastion of stigma in mental health concerns those with serious mental illness.
The facts are that mental illness is a brain disease, and, of the 9.6 million adults in this country with a serious mental illness like schizophrenia, bipolar disorder or major clinical depression, approximately 40 percent won't even receive treatment this year.
We have 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 go without care (4.4 million), be homeless (250,000), be in prison or on parole (1.3 million), or are dead by or attempting suicide (1.38 million) than are in appropriate psychiatric treatment (approximately 4 million).

Monday, June 23, 2014

Mental Illness 101: Overcoming Harsh and Hateful Comments (Sometimes Our Own Families Just Don't Understand)



A powerful post by my friend Leisl Stoufer – that 'every family member' who has a loved one living with a severe brain disease should read.



Everyone one of us has at least one family member who doesn't get it.  They continue to hurt us and our ill loved ones suffering with a mental illness  and they will, until we become so outraged to do something about the discrimination and injustice. Read Leisl's story here:

Mental Illness 101: Overcoming Harsh and Hateful Comments (Sometimes Our Own Families Just Don't Understand)
original
For all of history, society has done everything in its power to sweep the issue of mental illness under the rug.  No one wants to be associated with mental illness.  No one wants to admit that mental illness exists.  Certainly no one wants to have a mental illness in their family; and what could be worse than being the one who  actually has a diagnosis?  No one wants to be mentally ill. Nobody wants to be “crazy”.

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 REPhttp://www.opencongress.org/people/zipcodelookup