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:
Please follow us on Twitter:

Please join us on our Facebook page:

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

·       Asra Nomani, 304.685.2189,
·      Joe Bruce, 207.672.4449,

·      Pam Norick, 301.332.3639,

Sincerely,  GG Burns ~ Kentucky MH advocate

Mental health programs closing across Kentucky by Mike Wynn|

This report written by Mike Wynn, 
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., 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, 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 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.
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