Thank you, Larry Drain, for making us think and feel about the serious matter of mental illness in the light of reality . . . Reality check, anyone?

hopeworkscommunity, Larry Drain

What is Murphy selling?

Donald Trump gave me the clue.

Even more than AOT or any other policy idea Tim Murphy is selling something far more visceral, far more compelling and far more appealing. Like Trump he is selling anger to those who feel like they or their loved ones have been hurt by a system that often doesn’t help very much. Like Trump he is selling justification and direction by telling them who is to blame. Like Trump he is selling redemption and hope by telling them if they just follow and support him he can change it. His message is one of quest and crusade and rescue of those hurt and victimized.

Like Trump he has never let the facts get in the way but that is not the subject of this post.

Murphy has tapped into something very real. It is far more than a few overcontrolling parents frustrated with their kids. I sat one night with one 72 year old man talking about his 38 year old schizophrenic son. The pain and outrage was real. His son had been attacked by police in a parking lot who thought he was drunk a couple of weeks before he sat down with me. He had been tased more than once and they thought some damage to his legs might be permanent. He was furious at the police but equally furious at a system that had never been there for his son and furious….well just furious that the son he loved was seemingly stuck in the life he had. I remember listening to a mother describe the day she screamed and begged the police not to shoot her son. He had a towel wrapped around his hand and they thought he might have a gun. I have heard a hundred more stories.

It is not so very different than the rage I hear when I hear people talk about the damage they feel the system has done to them. It is the rage of the 22 year old girl with no history of diabetes in her family who now, courtesy of the medication a psychiatrist had prescribed her, had just found out she now had diabetes. She screamed at me….”What the fuck am I supposed to do now?”

It is my rage. My nephew one night laid down in front of a train and died. He believed that treatment was for crazy people and he could think of few things worse than being crazy. He believed what the wider society told him about “mental illness.” He didn’t want to be embarrassed. He didn’t want to stick out. He tried to hide his desperation. He tried to macho his desperation. Finally he decided to kill it.

The rage is real. It may express itself different for different people but it is real.

I think people can find better lives. My nephew, my friend’s son and literally hundreds of thousands of other people deserve something better. And it literally makes me want to scream and scream and scream that so many never find it. It makes me want to scream when people are treated as less than people. It makes me want to scream when the only options people have are things that have already not worked. And it makes me scream when people in their zeal to control symptoms destroy the quality of the life they are trying to save.

Murphy is not going away. The rage is real.

I think back often to something I heard Robert Whitaker say once. He wondered if we would ever have an honest mental health system. What if it was just about what worked?

What if it was?

Maybe in the end that is the only real answer to the Murphys…

KNOXNEWS.COM

Decision on Medicaid Expansion holds coverage for many Tennesseans in balance

By Kristi Nelson

Posted June 2, 2013, updated June 4 2013

It was supposed to be one of the strongest tenets of the 2010 Patient Protection and Affordable Care Act. Instead, it became a political football, a metaphor for states’ rights. After the Supreme Court ruled that the ACA could not force states to expand Medicaid, Gov. Bill Haslam was among those who rejected the Medicaid expansion, instead offering his alternative “Tennessee Plan” for federal government approval.

But whether the federal government and the General Assembly will accept Haslam’s plan remains to be seen, along with how well it will work to cover those who currently don’t have health insurance.

“He’s either politically brilliant, or he’s making one of the worst mistakes he could make,” Rep. Joe Armstrong, D-Knoxville, told the News Sentinel in March.

What the ACA intended

Originally, the Medicaid expansion provision was to give state health insurance coverage to a group of people who made too much to qualify for Medicaid but too little to afford insurance on the health insurance exchanges, even with the planned government subsidies.

It expanded Medicaid to qualify people younger than 65 whose income is below 138 percent of the federal poverty guideline (a little more than $15,860 annually for an individual, a little less than $32,500 annually for a family of four).

It meant that, for the first time, low-income adults who don’t have children could get state Medicaid coverage, and it standardized other qualifications.

Many states, including Tennessee, limit Medicaid enrollment to certain categories of people. To qualify for TennCare, for example, you have to be low-income and pregnant, a child, blind, disabled, aged, or fall under multiple, specific categories.

Tennessee has nearly 1 million uninsured residents, of whom at least 140,000 and maybe more than twice that number, by some estimates, likely would enroll in Medicaid if it were expanded under the ACA guidelines. About three-quarters would have been previously uninsured. Under the ACA expansion, the federal government would pick up the entire cost of new, previously ineligible enrollees for the first three years, phasing to 90 percent by 2020. In Tennessee, federal funds would have amounted to about $1.4 billion in the first year alone.

States could receive federal matching funds for covering additional low-income residents under Medicaid as early as April 2010, with wide-scale enrollment beginning this October and coverage starting Jan. 1, 2014. However, in June 2012, the U.S. Supreme Court ruled that the federal government could not make states expand Medicaid — making a linchpin of the ACA optional.

So far, 20 states have moved forward with Medicaid expansion. Ten have rejected it outright, while 10 others are not doing it now but are looking at alternatives and have not ruled it out for the future (the government gives no deadline, though states waiting much longer to decide stand to lose federal funds for the first year). Three states are still undecided, while seven — including Tennessee — are crafting their own, alternate plans.

On March 27, Gov. Bill Haslam announced that Tennessee would not expand TennCare rolls under the ACA, instead offering up an alternative he called the Tennessee Plan.

“I don’t think just pure expanding of a system that we all agree is too costly for us, is too costly for the federal government to afford long-term, is the right way,” he said then.

The ‘Tennessee Plan’

Haslam’s proposal is that the state use federal funds not to expand TennCare but to purchase private insurance through the insurance exchange for people who would have qualified for coverage under Medicaid expansion.

He outlined the proposal in the broadest terms, including five “key points”:

Individuals identified as being eligible for the Medicaid expansion group would instead be directed to the exchange, where they would be allowed to choose any qualified health plan that offers a certain level of benefits (the Silver Plan).

The state would pay the monthly premiums, matchable with 100 percent federal dollars, for those people to enroll in the Silver Plan.

People in the Medicaid expansion group would be treated like all other people enrolled in the Silver Plan, with access to the same benefits and appeals process as other people in the plans.

People in the Medicaid expansion group would have the same cost-sharing as other Silver Plan enrollees with incomes below 250 percent of the federal poverty guidelines. (On average, Silver Plan policies would pay for 70 percent of health care costs, with the remaining 30 percent paid by the planholder.)

The arrangement would have a “circuit-breaker,” or “sunset,” ending after the three-year period of 100 percent federal matching dollars, and could be renewed only with approval of the General Assembly. (This is true for states accepting the Medicaid expansion as well; they can stop using federal funds and drop the expanded coverage at any time.)

In addition, Haslam would seek to reform the way providers are paid for services, with payment based on outcomes rather than a set fee for services. The money saved, he said, would be enough to cover the state’s 10 percent share of costs after the government’s share goes to 90 percent.

“One option for covering the Medicaid expansion group is simply to add them to the Medicaid rolls, or the TennCare rolls, in our case,” Haslam said of the plan. “We don’t want to do that. There are a lot of federal requirements that come with Medicaid that make it difficult to provide quality care in the most cost-effective way possible.”

But the federal government may not allow Haslam to forgo some of those requirements. While national Centers for Medicare and Medicaid Services guidelines indicate that the main tenets of the plan — using federal dollars to pay premiums for low-income people to have commercial insurance, and reforming payment — meet federal requirements, some of the details don’t align with federal requirements intended to protect Medicaid enrollees.

For example, Tennessee would need to give those with serious health conditions a choice of enrolling in TennCare or private insurance, unless CMS were to grant Tennessee a waiver to that requirement.

The federal government would require supplementation of benefits (sometimes called “wraparound”) to make sure the commercial insurance plans include all services that would be available through Medicaid. Hypothetically, this could be done through a supplemental premium to the Silver Plan insurance provider.

The government also limits co-payments for Medicaid-eligible enrollees.

There is also an appeals process in place, required by past Supreme Court rulings, so that Medicaid patients and their doctors can challenge insurance companies’ refusals to cover “necessary treatments.” Under federal law, Tennessee would have to allow Medicaid-eligible patients this due process.

A federal entitlement program, Medicaid was designed for a population upon whom “poverty imposes special needs and the need for special protections,” said Carole Myers, a nurse practitioner and associate professor in the University of Tennessee’s College of Nursing. “They don’t have the same voice in government as those with different economic statuses and organizational affiliations.”

Haslam acknowledged in April that Tennessee probably would have to limit co-payments and provide the wraparound services for Medicaid-eligible enrollees for the federal government to approve his alternative, but he said he still thinks his overall plan is “workable.”

What’s next?

Haslam’s plan is modeled on a plan by Arkansas, which also wants to use federal matching dollars to pay commercial insurance premiums for those eligible for the Medicaid expansion. But while Arkansas got legislators’ approval before approaching the federal government, Haslam has taken the opposite approach, presenting his plan to CMS first.

Haslam did not ask state legislators to vote on whether to take the federal Medicaid expansion funds this session, though he said he has not ruled out calling a special legislative session later this year to meet federal deadlines for the health exchange enrollment starting in October.

The Medicaid expansion is the only provision in the ACA that provides insurance coverage specifically to those between 101 percent and 138 percent of the federal poverty guideline. If Haslam fails to reach an agreement with the federal government, or does not opt to accept the federal Medicaid expansion plan (which he could still do), that population likely would remain uninsured.

However, the latest word among hospital executives and advocates is that an agreement could be near.

“I think (Health and Human Services) Secretary (Kathleen) Sebelius is really eager to find some alternative plans that meet the goals of the ACA but do so in creative ways and allow states to create plans beneficial to those individual states,” said Jerry Askew, senior vice president for governmental relations for Tennova Healthcare.

Through Tennova’s parent company, Health Management Associates, Askew works with hospitals in seven states. All of them, except those in Kentucky and West Virginia, have said no to the expansion.

“They’re all trying to figure out what to do. It’s really interesting to watch how the state is to meet their individual objectives,” Askew said. As for Tennessee, he added, “It is fair to say that the governor’s plan is being built on principles that the majority in the Legislature would agree with. But it’s not a given. It’s a lot of hard work.”

Consumer-advocate groups and hospitals were in favor of the expansion, especially since hospitals stand to lose money on uncompensated “charity” care that would have been partially covered, at least, if more people were insured through Medicaid. The Tennessee Hospital Association has said the state stands to lose 90,000 jobs and nearly $13 billion.

Having that population continue to go uninsured also means higher costs in the long run, Myers said, as studies have shown that those without insurance are less likely to get preventive or early care.

“When you are resorting to getting care only when it becomes so bad you can’t stand it, and you’re in the emergency room, it’s causing a major human toll,” she said. “We know that intervention on the earliest point of the illness trajectory is the most cost-efficient. The true measure of whether we’re successful in what we’re doing in health care is in whether people have long, happy, productive lives.”

Business writer Carly Harrington contributed to this report.

 © 2013, Knoxville News Sentinel Co.

Thanks for the support
by Larry Drain, hopeworkscommunity

The following organizations have offered support of "Dear Governor Haslam".  They have put links to this site or printed the letters on their websites.  I really appreciate it.  I invite you or your organization to do the same.


Tennessee Health Care Campaign.
Tennessee Citizen Action.
Tennessee Disability Coalition.
Tennessee Chapter Depression and Bipolar Support Alliance.

AGAIN THANKS.

WRITE GOVERNOR HASLAM TODAY

hopeworkscommunity | June 1, 2014 

Murphy misunderstandings

byLarry Drain, hopeworkscommunity

Rep.  Murphy has not went gently into the good night.  Dr. Torrey will never go gently into the good night.  They are trying it sounds like to provide cpr to their bill. Rather the things that didnt work the first time will work on second effort is anyone's guess.  I think sometimes it is really hard for annointed national spokesmen to realize they are not and never were.

But this post is not about that.  It is about a fundamental misunderstanding of the American mental health system that was part of the reason that may have doomed the Murphy Bill from the start.

Murphy seemed to believe we were doing far too much for too many.  He thought people who were doing better in the system were robbing those who were doing poorly of help and resources. And he thought if resources were properly allocated things would be okay. Using terms like "worried well" he seemed to want to pit one group against another or at least give worried family members someone to blame. Somehow, I never really understood how, he seemed to think that this misallocation of resources was the fault of Samsha. It was us against them, with guys in black hats, just lacking an afternoon channel from being great soap opera. People were getting rich, famous and powerful off the worried well and just abandoned those in serious need. It had drama, moral outrage, and more than a little passion. It just lacked truth.

Anyone who had watched or been part of the last few years would tell you that state after state year after year had cut their mental health budgets to the bone. In some places there was only skin. The bone had long since disappeared. It was not that too much was done for too many. Too little was done for everyone. Many people lacked insurance and couldnt even access the services that were there. It wasnt misallocation of funds. It was abandonment. Never, not once, have I ever heard anyone touting the Murphy bill ever acknowledge this.

The baggage from Dr. Torrey obscured their vision. No state bought his love affair with psychiatric hospitals. It was too little bang for way too much bucks. No one believed. It was a cash cow around their necks that threatened to bankrupt their community systems. There was little or no proof it worked. When insurance companies basically stop paying for a service that service is on borrowed time. No one drank the kool aid any more.

There will probably always be psychiatric hospitals. But they will never be the centerpiece of the mental health system again. Putting your money into backline services, what you do when things go wrong, destroys your ability to keep things from going wrong. There was never any conspiracy. People just decided what they thought mattered and all of Dr. Torrey's pr and marketing campaigns just didnt change that. In the end I dont think federal law can bring back psychiatric hospitalization as the gold standard of mental health care. The truth is that even people with "severe mental illness" can and do make it in their communities with effective support and services.

The notion that one group of people needing help was more worthy than another and that they were in competition just seemed like such a mean and stupid notion. It completely just ignored the reality of the bloody battle for funding that is the reality for so many states. It was a pseudo explanation for the fact that state after state just said "Dr. Torrey we dont buy what you say and your way will not increase the amount of services for people with severe needs but radically decrease it."

Count me cynical. Count me way cynical. Murphy lost because it was never about a battle for the "severely mentally ill." It was a battle for Dr. Torrey and a vision found lacking a long time ago.

hopeworkscommunity | June 11, 2014

The Murphy bottom lines

by hopeworkscommunity

When you strip away all the fancy words and the tons and tons of rhettoric about what the Murphy Bill says and simply ask yourself "What is the plan?" you get a few core ideas.  What does Rep. Murphy think we actually need to do to serve the severely mentally ill?    There are many other provisions of the bill that has nothing to do with what I am about to talk about. Many of them are the most positive features of the bill.  But this is what I think the essence of the Murphy plan is.  These are his bottom lines.  These are his "new ideas."

He believes, in effect, that many of the severely mentally ill suffer from a defiency of psychiatric hospitalization.  He seems to see that as the answer to so many people with "mental illness" being in jails and prisons.  He thinks that way too many hospital beds are gone and it is time to increase hospitalization radically.

 Perhaps I am wrong but I believe that ship has sailed.  A mental health system with psychiatric hospitalization as its corner stone is not financially sustainable in this country.  Insurance companies pay less and less for it.  They do not see it as medically necessary but in the most extreme circumstances and then for brief periods of time.  In Tennessee I believe most psychiatric hospitals are struggling to break even and most of them are losing that struggle.   States are getting out of the business.  They realize that a large hospital system leaves them unable to finance a community system and if you dont have a community system to serve the people coming out of the hospital what is the point of the hospital.  If you look at how often and how quickly people leaving the hospital system end up back there you begin to realize the impact of disemboweling the community system.  I cant even imagine the circumstances under which Tennessee would act to increase the beds in any kind of dramatic way, indeed in any way at all.   It is far too little bang for way too many bucks.  

His method for making psychiatric hospitalization possible is to remove the IMD exclusion on medicaid funding.  Basically it makes it possible for medicaid to then pay for state psychiatric hospitals.  One question comes to me immediately.  If Congressman Murphy thinks that medicaid funding is such an important part of mental health reform why did he vote to repeal the ACA over 50 times?  That bill through its provisions for medicaid expansion would have given millions of people with "mental illness" access to programs and services that if he has his way they will never access.

A couple of other questions come to mind.  What about the people who dont have medicaid access?  Many people with "mental illness" and particularly many people who are having serious problems in life simply dont have insurance.  Another question is the response of states to finding out now that medicaid funds can pay for psychiatric hospitals.  In most states that I am aware the medicaid program eats up a considerable portion of their state budget and I really question, particularly in the states that choose not to expand medicaid, how receptive they will be to finding out that medicaid expenses are about to soar through the roof.  In Tennessee the most likely two responses are to adopt the private insurance definitions of medical necessity and decide not that many people need hospitalizations and/or cut benefits and provider payments to pay for any any expenses the increase in hospitalization is likely to cause.  The provider rates for psychiatric care, at least in Tennessee, are so low that very few people will even provide services anyway and there is a serious real question about where the professionals to do all this treatment are to come from.

Even if you start to use medicaid funding it does not begin to pay for all the new costs.  The state institutions in Tennessee for example are aging. There is a need for new buildings and new spaces if beds are added.  Who pays for new hospitals??  What about the cost of new staff??  Who pays?  I can only speak to Tennessee but there is no commitment to psychiatric hospitalization, especially on a massive scale, as the answer to anything by state officials, by mental health professionals. by anyone that I know and removing the IMD exclusion is unlikely to change that.  The strong perception is that the community system is the most cost effective and effective means to help people meet their needs and that it is defiencies in that system that lead most to people falling through the cracks.

And even if it was possible would it work?? I know of no evidence, that other than providing a place for stabilization, that psychiatric hospitals work in any enduring fashion. They dont, if you look at return rates, even work well enough to keep people out of psychiatric hospitals.

I dont know but would be willing to hazard a guess that many of the "mentally ill" in the prisons and jails have had considerable psychiatric experience with little or no solid gains. Criminal behavior is not a symptom of mental illness and the "put them in the hospital" solution ignores things like poverty, drug addiction, racism, lack of work, homelessness and history of trauma and other adverse events that lead to someone actually committing criminal acts. The other thing to consider is not the degree to which "mental illness" causes criminal behavior but the extent to which incarceration causes "mental illness." Is treatment needed?? Are mental health resources needed and might for some people those resources be inpatient resources??? Of course. I wonder what percent of those people in jail would even meet the criteria for hospitalization?? I dont know the answers but tend to believe it is the lack of effective and accessible community resources that engender emotional involvement with the people they serve that is the root of the great numbers of "mentally ill" in jails and prisons.

Another core point of Murphy is that he believes that too many people get mental health services and that it is the "worried well " that are basically stealing resources that are better used by the severely mentally ill. Given the fact that most mental health systems have been starved and cut back over the last few years it seems a little like telling one person eating bread and water that the the person next to him is eating too much bread and water and not considering that the problem is the diet of bread and water. It is an argument of little integrity that resorts to an us vs. them argument as a pseudo explanation. It ignores totally the fact that state legislature after state legislature has sacrificed their mental health system on the fires of "financial responsibility" over the last few years.

There are without question people who are victims of a psychiatric system eager to diagnose every event in life as an enotional illness. There is a reason that pharmaceutical companies make money. But there are also people who struggle every day with serious mental health issues, trauma, and distress and to dismiss those people as dupes or malingers is stupid, dishonest and evil. If you think the biggest problem in the mental health system is that too many people need or are seeking help then you are a simple minded person not worthy of being taken seriously.

If you take the notion of "worried well" seriously it takes you to some strange places. How do you decide who is "worried well"? Who decides? Based on what criteria? What do you do to the "worried well"? Do you limit their access to services? How? How much and why? If you dont limit their access to services arent you being complicit in the people who need help being hurt?? And how much is all this going to cost?? Do we need programs to make sure that people who need services get them and another program to make sure those that dont are kept out. This is a treacherous notion that if you take serious leads to nightmares.

Another core notion is making assisted outpatient treatment a law in every state. They tell you that aot is a major problem solver but dont really explain why most of the 45 states that have it dont really use it. And they dont really explain why you need to make something a federal law that is already a state law. And they dont really explain why if 45 states can choose to have it 5 states cant.

I think the truth is that most states who are not willing to throw $32 million a year at it like New York find it more irrelevant than anything. It costs too much and does too little and in an environment of increasingly limited resources is not something that a lot of people are going to turn to to solve many things. And none of this even begins to touch on the questions of choice and coercion that so many people find so fundamentally troubling.

Another core notion of the Murphy Bill is that too many people complain about the human rights of people in the system being important and those people need to be quiet. It would basically eviscerate the protection and advocacy programs like Paimi and legislate away their voice. The idea that people in the system dont need protection is naive and self serving and something you might figure a psychologist or psychiatrist might come up with. Ask anybody in the system. See how safe they feel in the system.

The final key element is to do away with the notion of recovery and the best way to do that is to cut the legs out from under Samsha. Samsha is as close to a boogeyman as there is in this play. They are blamed for everything bad that has happened or will happened. The fact that thousands of people have found recovery to be a real thing is explained away by saying they probably didnt need help anyway or that they are in a remission that would have happened anyway regardless of what they did. If you dont like what you see it works really well to convince yourself that it was really something else.

Samsha is blamed for many things it doesnt decide about. The state of Tennessee decides what kind of services it will offer the people it serves....not Samsha.

Like I said at the start there is more to the Murphy Bill than what I have described here. He took a lot of peoples good ideas and made them part of his bill. None of them seem though to be core elements that define the bill and that is a shame. He has told people he will work with them on a better bill but no one knows what that means because he has compromised on nothing. I have been told by a lot of people I know that is bill is in trouble and very unlikely to be passed as written. I dont know how true that is, but know it is in everybodies best interest to know the bottom lines of what he proposes and decide what that means for them and the way they would like to see the mental health system change.

hopeworkscommunity | May 16, 2014

May 2014: Kathy Flaherty

Kathy Flaherty works as a senior staff attorney at Statewide Legal Services of CT, Inc.  She has dedicated her professional life to advocating for the rights of the underserved.  A graduate of Kingswood-Oxford School, Wellesley College and Harvard Law School, Kathy has 17 years of experience in poverty law, specifically focusing on housing, benefits, and consumer law. 

Kathy lives with bipolar disorder.  She makes full use of her work place’s very generous sick leave benefits and a flexible schedule.  Kathy was diagnosed her first year of law school after being civilly committed.  She was not permitted to return to Harvard until the next fall, at which point the school put conditions on her return. 

During her third year of law school, she used the Harvard Law School newspaper as the forum to come out about her illness.  Against the advice of the Office of Public Interest Advising, when applying for jobs after law school, she included her position on the council of former patients of McLean Hospital, making her disability fairly obvious.  “If someone didn’t want to hire me because of my disability, I didn’t want that job.” Kathy says that she has gotten jobs because she has disclosed.

Kathy shares that her biggest barrier to the legal profession was getting admitted to the Connecticut Bar.  Despite the fact that she had already been admitted to the Massachusetts and New York Bars, she had to wait for a year and a half and then was conditionally admitted. For the next nine years, she had to report that she was taking her medication, as well as provide a doctor’s note twice a year confirming that she was in fact taking her medication. 

Since 1999, Kathy has served as a volunteer trainer, presenter, and facilitator for Connecticut’s chapter of the National Alliance on Mental Illness (NAMI-CT).  Combining her personal experience as a recipient of mental health services and her legal background, she is able to speak to issues affecting those living with mental illness from a multi-faceted perspective.  Her advocacy work has earned her numerous honors including the Dr. Karen Kangas Advocacy Award from Advocacy Unlimited in 2010.   “Winning an award named for someone who is a role model for advocacy and a very dear friend is humbling.”

Kathy currently serves as a member of the Board of Directors of Advocacy Unlimited, Lawyers Concerned for Lawyers-CT, and the Connecticut Alliance to Benefit Law Enforcement (CABLE). She also serves on Governor Malloy’s Sandy Hook Advisory Commission.  Her goal for the future?  “To continue to do work I enjoy.”