Category Archives: mental health

Lend Me Your Ear(mark) and I’ll Sing You a Song? Governor Bentley’s Budget Plan Puts State Mental Illness Care at Risk


As most of my Alabama readers know, our legislature ended the session with no solution to our budget shortfall. We simply do not raise enough money in tax revenue to run the most basic functions of the state. On August 3, our legislature meets in special session to try and solve what couldn’t be solved for months this spring.

Governor Bentley has now released the details of his plan. There is a bit of actual revenue raising, but much of his answer appears to be shuffling money from one insufficient fund to another.

Most alarming is the proposed un-earmarking of nearly $200 million intended for the Special Mental Health Trust Fund—a substantial part of the Department of Mental Health’s budget. Otherwise, the Department depends on General Fund appropriations, which have steadily declined over recent years—the earmarked money is the only secure element. The outcome of poor funding has been dismal, with ever-longer waiting lists for life-saving services. Shane Watkins died this year, because when he needed hospitalization for his severe schizophrenia, there were no beds. Current funding is not acceptable. Level funding for 2016 would not be a victory. Now our governor wants to put mental health funding at even more risk.

Here is an example of the deleted earmarks: “…shall be deposited in the State Treasury to the credit of a special fund which shall be designated the Alabama Special Mental Health Fund and shall be used only for mental health purposes, including the prevention of mental illness, the care and treatment of the mentally ill and the mentally deficient and the acquisition, equipment, operation and maintenance of facilities for mental health purposes.”

Supposedly, we are to believe that money will be taken and then somehow returned afterwards in the subsequent budget process, with a leap of faith reminiscent of the Flying Wallendas. But if these funds are needed to make up a deficit in the General Fund to begin with, how will they be given back? Where will the money come from? If there is money to return to the Department of Mental Health, then why take it away at all? Removing an earmark to solve a General Fund shortfall only makes sense if the earmark is going to an over-funded area. I am not an accountant—I never in my life took a finance class. I still think I can recognize tomfoolery when it is this blatant.

I am aware that our state has an incredible number of earmarks, and I know analysts have said this is a problem. At the same time, I can see why we need them in a state which refuses to fund basic functions on a reliable basis in the annual budget. It’s the Ulysses strategy—we lash our legislators to the budget mast before they pass the Sirens singing at them to drown us in the bathtub.

I strongly recommend that Alabama voters contact their legislators now and advise against un-earmarking these critical funds. Tell them we don’t want circus acts performed with our money.

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Filed under Alabama Legislative Session 2015, mental health

Serious Brain Illness: We Can Tear Down This Wall


Today, on the birthday of Dr. King, what will you do to honor his memory?  I took some time to think about the particular essence of the work he took up, the work that never gets completed and is always necessary.  I’d like to suggest there are two basic elements of that work.  First, we must always bear witness to our shared wrongdoing, by naming and calling out the human-made class, habit and stereotype driven barriers to human potential; and second, we must just as vigorously speak of our capacity for something better, offering each other enlivening glimpses of the possible future, through the yet-to-be torn down walls.

The barrier I want to call out to you today is the one we’ve created for those with serious brain illnesses like schizophrenia and other psychotic disorders.  We didn’t cause these brain illnesses, as best we can tell— they present their own barrier, for sure, but that’s not the one I’m naming. 

The barrier I mean is our special singling out of humans with life-threatening brain illnesses to be left largely without treatment, ignored and even criminalized.   If you watch this video of a man with schizophrenia, homeless due to his illness, being beaten to death by police instead of given desperately needed treatment, and you then learn his killing was not found criminal by a jury, you can see what our created barrier has done.

I had a hard time watching that.  I had to do it in pieces.  I said I wasn’t going to watch, because my imagination was painful enough, and because nothing about this event is actually new or unusual, and because I am a caregiver for a young adult with this same illness, and because I didn’t need another reason to cry about what is happening to sick people.  Lots of excuses, but bearing witness means we have to watch the hard parts.

Now you can take a breath, and I’d like to offer the second half, a glimpse of a future where we tear down the barriers to treatment we have built.  We made them:  we can take them down. 

We haven’t seen substantial national legislative effort to do anything until recently, with the Helping Families in Mental Health Crisis Act.  Representative Tim Murphy, a psychologist, has put forth a game-changing bill that would go a long way towards allowing people with serious brain illnesses to live safely and with dignity in their communities, instead of being consigned to homelessness, jail, and early death.  I have read and thought about the bill in entirety (there are links in the site above).  I endorse it strongly. I am contacting my legislators to request their support.  I believe it will do some work that seriously needs doing.  That’s my short version.  If you’d like to know a few more specifics, please read on and also see discussion of the bill here.  If there are questions not addressed, please let me know and I’ll try to get an answer for you.

Quick Summary of HR3717: Helping Families in Mental Health Crisis Act

This bill would restructure administration of planning and funding at the federal level in a shift towards known to be effective policy and an evidence-based approach to evaluating programs.  Focus would be put on services allowing persons with serious brain illness to stay in their communities while being effectively treated.  Specific parts of HIPAA (health information privacy law) would be modified to allow caregivers to know information necessary to health and safety. 

I have seen criticism of the bill from advocates with milder brain illnesses who fear mandatory treatment would be forced upon them or that choice would be removed from those who have done, as is typically said “nothing wrong besides being mentally ill and homeless.”  I can certainly understand why someone with a mild illness would extrapolate the same ability to think and reason clearly to someone more severely affected and be concerned about the ill person’s freedom.  Indeed, we all might do well to have the level of concern necessary to monitor treatment programs and legal action from misuse.  There will always be a gray zone where assessment of competency to make decisions is uncertain.  On the other hand, we don’t quit giving antibiotics to patients with meningitis just because they are used wrongly for viral illnesses. We don’t shut down hospitals that are needed but are not functioning well, because we still need somewhere to go when we have heart attacks—we fix them. Wait, we DID do that…but only for brain illnesses.

Reading this bill, I would say that if an error has been made, it appears more likely in the direction of slightly undertreating, due to long-standing fears of overcalling brain illness.  The gray zone has been largely excluded. Only those with the most severe psychotic illnesses are addressed by the bill, and some will still be left out in the effort to preserve rights.  Breaking down a barrier takes time and sometimes has to be done stepwise.

As I’ve discussed in prior blogs, those with severe brain illness often present with anosognosia—inability to recognize their illness.  Rational thought is lost due to the illness itself, which renders the choice of treatment or not meaningless to the person.  Paradoxically, mandatory treatment can sometimes restore thinking ability to the point of competency.  Even when that doesn’t happen, treatment increases the chance substantially that the person will be able to live in the community and enjoy the normal rights and potentials the rest of us enjoy.  A person having a stroke will be treated, even though he can’t ask for help.  A person with severe brain illness, whose illness steals his ability to understand why help is needed, is not treated because he doesn’t ask.  Both must be treated in order to access their ordinary civil rights.

Funds Currently Misdirected

SAMHSA, the Substance Abuse and Mental Health Services Administration, would come under direction of a new office, the Assistant Secretary for Mental Health and Substance Use Disorders, as part of the Department of Health and Human Services.  This person would have to be an actual psychiatrist or psychologist with research and clinical experience.  A National Mental Health Policy Laboratory would consult with the National Institute of Mental Health to identify evidence-based policy, implement it, and monitor outcomes.  An interagency coordinating committee would work to integrate all federal work on mental illness and would include representatives affected by brain illness under treatment, family members, and advocates.  Professional peer review would be required for all grants and proposals.

At present, SAMHSA is not administering available funds in a targeted, evidence-based manner.  Priority is not being given to those with the most severe though treatable illnesses and is being distributed to various fluff grants instead.  Sometimes redesigning administrative functions is just window dressing.  And sometimes, that is the only way to shake things up enough to change them.

A few years ago, I was offered a chance to attend a SAMHSA funded training session for healthcare providers on substance abuse screening.  Because I was in the process of helping a group of pediatricians in my state select a screening tool for teens, I registered, hoping I would learn more about how to use the tool.  I had a paid trip to Miami, where I stayed in a fancier hotel than I would ever manage on my own, for a 2 day session targeted primarily at screening and motivational interviewing for basically well people.  Instead of focusing on how we could work with patients ill with serious addiction, the thrust was on how anything more than 1 drink a night for women or 2 for men could be a health risk and how we could help people quit doing that.  Addiction was normalized and thus forgotten.  How many people could have undergone actual treatment for the funds taken to do that conference?  If the restructuring frees up funds to be used well, we can afford to do so much more.  Throwing money at a problem definitely doesn’t solve it when so much goes in the storm drain or gets blown away—aiming and directing money at a solution works much better.

Redirecting Funds: What is AOT?

There would be 50 grants available to establish new Assisted Outpatient Treatment programs (AOT).  AOT is an evidence based therapy to provide monitored treatment of brain illness in an outpatient, community setting.  The requirements are stringent—only those who are not able to provide for their own basic needs due to brain illness, who are likely to substantially deteriorate without treatment, who lack the capacity to make decisions, who have a history of violence, incarceration due to illness or repeated hospitalizations due to non-adherence with treatment, or who present a danger to self or others would be included.  AOT has been determined constitutional in court.  Typically outpatient commitment is ordered for a one year period and can be renewed, but only if the same conditions are still met.  At the court hearings for commitment to AOT, the patient would have legal representation and could give testimony.  No permanent or longstanding sentence is imposed.   If a year seems long, remember illnesses this severe and chronic are not likely to be going away.  And prison sentences for untreated persons are often far longer.

This does not mean the eccentric guy who puts out funky lawn ornaments is going to be held down and given a shot.  It does not mean every person who hears voices, or mumbles to herself in the grocery store, or is disheveled, or preaches on the street corner is going to be picked up by police.  Forget what you’ve heard about mental illness being so common and ordinary—it is not, not the kind covered by this bill.  We don’t have the money to do that kind of thing anyway.

The bill would increase funding for the most serious forms of brain illness and specifically devote a portion to illnesses associated with violent acts, in effort to find more effective treatments.  It would provide for education in schools on signs of brain illness and how to respond.  It would extend meaningful use funding for electronic health records to psychiatric facilities.  Liability protection would be extended to qualified volunteer physicians at outpatient psychiatric clinics.  Funding would be put into suicide prevention programs.

The bill would give grants to establish telepsychiatry programs and train primary care doctors to work in collaboration with psychiatrists.  It would give planning grants to 10 states to establish Federally Qualified Behavioral Health Clinics, which would be required to include child and adolescent trained psychiatrists and staff, training in dual diagnosis (addiction plus another brain illness), rehabilitation services, peer support, and supported education/ employment.   It would fund training for first responders to recognize brain illness and act appropriately to avoid killing the person they need to help or being killed themselves.  It would strengthen funding for mental health courts and veterans’ treatment courts.  It would protect medications from exclusion from state Medicaid formularies.  It would fund inpatient and residential treatment for those on public insurance between age 21 and 65.

Eliminating Obstacles to Sharing Vital Information with Caregivers

For patients being supported by a caregiver, usually a family member, at present HIPAA creates a dangerous barrier to good care.  In order to provide home care that is actually a form of residential, medical care, the parent or other family member must be able to know what medications are to be given, what side effects to look for, what symptoms of relapse are, and how to respond appropriately.  The caregiver must also be able to locate a hospitalized family member and be able to give crucial information to the treatment team.  We ran into a problem with this a few years ago, when we were not contacted upon hospitalization of our family member until he gave consent the next day.  He had been started on a medication that had given him dangerous side effects in the past, and we could have prevented that had we been notified.

The bill would allow only such pertinent information to be shared with caregivers, the same as it would be shared with nursing home staff.  If a person is not ill enough to need a caregiver, this section is irrelevant.  So it does not mean that your therapist is going to tell your mother about your session and what you said about her.

Flaws in the Bill

So, what are the flaws in this bill?  Every bill has them, of course.  These are the ones I see:  non-brain-based language is used throughout—“behavioral” is a particular annoyance.  People with heart attacks are having a “behavior” when they grab their chests, I guess.  The same-old same-old “quality” monitoring measures and incentives are proposed, which are not really measurements of quality care but of less sick patients.  Effective quality improvement can be done, and not like that.  The HIPAA improvements do not, for some reason, include 14 to 18 year olds.  A friend suggested to me this was because state laws regarding minors are so different.  However, at least it would be wise to include caretakers for emancipated minors in the safety-motivated release of information.  There is no provision to require medical information to be given to primary care doctors by psychiatrists, which turns out to be harder to get done than you’d think.  Many states have restrictions on sharing such information, despite it being crucial to safe patient care.  I see a lot of grants and funding which appear temporary, so I do have concerns that states may establish services that will then lose funding.   This is not a reason to avoid beginning, just a caveat that we will need effort to maintain what we start.  I do not see any of these flaws as critical to change before passing the bill.

Today, I have made my very small act in honor and appreciation of Dr. King and his life’s work.   I have called out a harmful, human-made barrier to the lives and dignity of those affected by serious brain illness.  And I have shown you a view of the possible, a better path forward.  Small acts can add up, when we all do them.  What do you see, in place of the barrier?  What will you do to help take it down?

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Filed under addiction, evidence based medicine, Healthcare reform, mental health

Serious Brain Illnesses and the ACA: No Relief for the Weary


As a pediatrician whose patients and their families sometimes develop serious mental illnesses, and as a family member and caregiver, I can tell you the word “serious” is a euphemism, a polite understatement.  I have a friend with stage IV cancer who has received life-saving treatment for many years—she is able to work, care for her family, and enjoy her life despite the fatigue and side effects.  If she were to stop treatment she would likely die quickly.  Her illness is serious.  Treated, illnesses like schizophrenia and bipolar with psychosis settle to the level of serious.  They are not really “mental” either, which sounds as if we are speaking about nebulous, abstract, idea-based problems —they are brain illnesses.  Let’s call them what they are.  Untreated, these brain illnesses are not serious—they are devastating, catastrophic, and deadly.   Those who do not die wind up far too often in prisons unprepared to care for them or homeless, living—if one can call it living—under bridges and in doorways. 

 

Brain illness care has long been the red-headed stepchild of medicine—barely funded when required by law, and far too often, not even then.  For decades, advocates have worked towards parity, the equal treatment of brain and other body illnesses by insurance, only to witness seemingly solid legislation morph into a sieve of loopholes.  Anyone who has watched can testify to the creative genius of private insurers, against whom no legal barrier to patient abuse has so far succeeded.  Prohibit annual or lifetime payment caps and they limit the number of visits allowed.  Require inpatient hospital coverage and see new categories like “partial hospitalization” that don’t count.  Require outpatient coverage and get provider networks at payment rates so low hardly any doctors sign up.  Will the Affordable Care Act (ACA) along with the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 do any better?  My short answer is “no.”  For the long version, read on.

 

 

Under the recently released final rules for parity, effective for plan years that begin after July 1, 2014, most private insurances (except for grandfathered small group policies) will have to provide some brain illness coverage.  The exact services covered will vary between states, because of the way the Department of Health and Human Services interpreted the ACA.  By making Essential Health Benefits depend on prior insurance offerings in each state, the word “essential” is stripped of any semblance of ordinary meaning and varies when we step over the state line between Alabama and Georgia.

 

The final parity rules removed an earlier stipulation for insurers to use clinically accepted standards of care for brain illness treatment authorization. If a treatment is recommended by national experts and advised by your own doctor, the insurer does not have to use the same guidelines and can deny payment.  Although plans are supposed to use similar methods to develop provider panels for psychiatric and other medical care, the parity rule discussion says disparate results in the composition of those panels don’t prove there is a problem.  So if your plan does not include sufficient psychiatrists on the panel accepting new patients (a common issue) but has plenty of other types of specialists, you may not have grounds to protest if the insurer can figure out an excuse.  If insurers are only providing certain elements of brain illness treatment in order to satisfy the ACA, they don’t also have to meet the full requirements of parity otherwise. 

 

There may be some relief to states and patients for coverage of court-ordered brain illness treatment, because insurances can’t restrict such coverage if they don’t restrict it for other court-ordered medical services.  For example, if a court-ordered blood transfusion for a child would be covered, then services provided during a court-ordered psychiatric hold should be covered as well.  I am uncertain if insurers will be permitted to exclude the entire category of all court-ordered treatments to evade this element—I do not see reference to this in the ACA itself.  If that is an available loophole, we will certainly see it used.

 

If insurers cover a certain type of care for medical illnesses, such as outpatient rehabilitation or residential treatment, they must now also cover it for psychiatric illnesses.  That sounds good on the face of it— funding is greatly needed for day treatment programs and other levels of supervised care.  Unfortunately, the option is still wide open for insurers to deny or limit authorization for such services based on… well, whatever they want to base it on, absent any requirement for using accepted standards of care.  I expect we will have services mainly in theory, denied in practice by some set of arbitrary criteria.

 

In a particularly odd arrangement, insurers that can demonstrate a 2% or more increase in costs during the first year of parity can request exemption from parity the next year, and afterwards a 1% cost rise gets them a one year exemption.  Potentially, subscribers could have brain illness coverage every other year.  If my friend with cancer got her chemotherapy only every other year, what do you suppose would have happened by now?

 

The point-of-service cost-sharing barriers are substantial under the ACA.  For those with lower incomes who don’t qualify for Medicaid and have subsidized plans, a $30 co-pay might as well be $300 if they don’t have it.  A $2000 deductible or out of pocket limit?  Unimaginably out of reach.  People affected by serious brain illness are more likely to have lower incomes and thus likely to forgo necessary care at a lower level of up-front cost.

 

Some with serious brain illnesses who have not been able to get private insurance due to their pre-existing conditions may now get private policies.  Those under 26 can now stay on parent plans—but will these newly covered persons have access to care?  Having an insurance card is not at all the same thing as being able to get treatment.  At the onset of illness, many already had private insurance that failed to meet their needs.  I have seen no improvement at all in access for my privately insured patients to appropriate care for brain illnesses.

 

For long-standing serious brain illnesses, partly because treatment barriers and gaps have contributed to loss of function, public insurance is common—either Medicaid, for those with SSI Disability, or Medicare for those with SSDI.  I do not see the kind of changes in either of these programs that would be needed to prevent care gaps.  The “donut hole” for Medicare prescription coverage is closing, but there remains substantial out of pocket cost.  There is no parity requirement for payment of psychiatrists in Medicare and payment is low compared to other outpatient services.  Consequently, finding a psychiatrist who accepts Medicare isn’t easy.  In my city, the only option is the county Mental Health Center, already overloaded.

 

Medicaid appears to be affected by parity only if it is administered through Managed Care Organizations or Alternative Benefit Plans.  The Medicaid Expansion, in states that adopt it, will add some with brain illnesses who have not been able to get disability benefits.  The main barriers to care for those with Medicaid are funding, generally severely inadequate at the state level, and commitment laws that hinder timely treatment when the patient is sick enough to be unaware of the illness (anosognosia).   When it comes to strokes and heart attacks, we hear “time is tissue”—the rush is on to treat patients urgently, conscious and asking for help or not.  With serious psychosis, just as damaging to brain tissue if untreated, we bizarrely decide the ill person, unable to make rational decisions, does not want help.   Staffing at Mental Health Centers is limited, wait times are lengthy, and necessary community supports are minimal to absent. There is no move towards building a serious brain illness treatment infrastructure in the ACA.  If care is affordable but not available, patients are left behind just the same.

 

Although Medicaid pays for residential care of those with intellectual disabilities, there is an “IMD exclusion” prohibiting federal matching funds for care in a psychiatric hospital.  This has helped cause deteriorating service quality at state hospitals and made it appear cheaper for states to put those with serious brain illness in jail than to hospitalize them.  The ACA includes a “demonstration project” to pay private psychiatric hospitals with Medicaid funds to provide emergency services in some states. Because private hospitals have higher administrative overhead, proportionately less money may be used for actual patient care than in lower overhead public facilities.  The demonstration project funds are not available for public psychiatric hospitals, although the money is public in origin. Why not use those funds to improve state hospital care and coordinated transition of care to communities?

 

Because milder brain illnesses are more common and seem to garner more popular sympathy than serious cases, I am also concerned about wise use of scarce resources. The ACA does nothing to ensure that priority will be given to those most severely affected, both in terms of initiating treatment and maintaining it.  The spectrum of brain illness is broad, just as for other medical illness.  It is being absurdly stretched to include non-illness ordinary frustrations of life so providers can be paid for their preferred “patients.”   

 

I would not begrudge a person with a mild brain illness appropriate treatment any more than I would a person with a mild asthma flare-up.  Mild problems can become serious without good care.  At the same time, I would not leave a person in my waiting room gasping for breath to see one with a head cold.  I would not stop insulin for my patients with diabetes just because they “look good right now” in order to counsel basically healthy people on how to eat more vegetables.  And that is the sort of mindlessness happening in brain illness care right now—priority is given to the worried well.   

 

Although we have no cure for the most devastating brain illnesses, we most certainly do have multiple proven interventions that can, much of the time, bring those affected to the level of the merely seriously ill.  Treatment reduces the risk of relapse and allows many to have meaningful lives in their communities.  Just as with cancer, brain illness can sometimes worsen even during treatment so that the care plan needs to be adjusted—this can only be effective when care is continuous and frequent enough to catch the early signs of trouble.  Each relapse not treated quickly and skillfully may cause cumulative, permanent, unrepairable damage to the brain.  Treatment gaps in a system full of cost and access barriers can mean death. 

 

Any reform of healthcare that fails to address the needs of people with serious brain illnesses, including their critical need for continuous care with no loopholes or gaps, is a sham, a travesty, and a parody of reform.  I am weary of seeing tragic headlines about those we have failed, when I know we already have the knowledge and tools to do better.  My grade for the ACA on brain illness?  Fail.

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Filed under HHS rules on ACA, Medicaid, mental health

A Few Words: Why it matters how we talk about what happens


First of all, let me say that as I write today, we have no idea at all yet what caused the tragic shootings in Aurora, Colorado this week.  So I’m not going to jump to the conclusion that the shooter is mentally ill.  I don’t have to—plenty of folks have already done it for me!  There are various opinions on whether we should or shouldn’t “use” horrible events to promote various political agendas.  I’m not going to do that, not because it isn’t legitimate but because something just feels off about the idea.  Instead I want to talk about our responses to the events.  The words we use about them can either stimulate needed discussions or cause further harm—it really does matter.

Second, I’ll say right off that I’m not much of a politically correct word purist.  I am a member of NAMI (National Alliance on Mental Illness) and have more than one family member with serious mental illness. We are taught to stop using words like “crazy”, “loony”, “nutcase”, etc, because these are quite hurtful to people we love.  I still use the word “crazy”, a lot, but I use it to mean “something that doesn’t make sense to me” or is over the top, as in “I had a crazy day at work” or “the phone is ringing like crazy”. Yes, I occasionally even use it in a teasing way, towards a person.  I am probably not supposed to do that.

We have a lot of words and phrases in English to describe a person who is behaving foolishly or irrationally.   Some of them are colorful and spot-on, and I see no compelling reason to eliminate them.  “She’s fallen off the deep end”, “he’s taken leave of his senses”, or “lights on but no one home.”  Most people don’t say this stuff when they know a person is actually sick—that would be cruel.  It’s just our way of talking about the sometimes incomprehensible behavior of humans.

There’s a certain line we can cross, though, where our thoughtless speech habits can cause unintentional pain.  To me, that is most likely to happen when we use words like “crazies” as shorthand for groups of people, especially people who might actually be mentally ill.

For example, a newspaper article this weekend made the statement “You can’t let the crazies win” and compared it to not letting the terrorists win (by going shopping).  My understanding was that the writer meant we couldn’t let fears of highly unlikely events keep us from doing ordinary things, like going to the movies.  Instead, he hurt the feelings of many families, including mine, and inadvertently perpetuated stereotypes about those with mental illness.  What are people with mental illness trying to win—a game? A war?  Of course not—they want what we all want, a good life.  Are we supposed to fight them, so they don’t win?  We should be fighting instead on their behalf, for better treatment and access to treatment.  That was a clear line-crosser.  I’m surprised no one caught it before it went to print.

I expect professional journalists to do better.  I’ve commented on several Facebook posts also, for people who are not paid to do better.  There is no reason to use comments like “this is about nuts and ignoring nuts” or talk about “the crazies running around shooting people.” I’ve tried to rein in my irritation and just comment that this kind of talk is hurtful.  Most people just apologize, which is all I want.  Others get offended. In the words of an old friend, “I’m sorry but I’m not going to apologize” about speaking out, any more than I would for calling someone on a racial slur.  It is the same thing. We need to make it socially unacceptable.

Why does it matter?  People with certain mental illnesses, if untreated, are clearly at increased risk of doing violent things.  Those who are treated are zero percent more likely than the rest of us to hurt people. They are, however, at significantly increased risk of becoming the target of violence by others.  When we disparage groups of people with mental illness as “the crazies”, we fuel stereotypes that in turn fuel violence.  Who wants to go to the doctor and be labeled a “crazy”?

Many, many people with serious mental illnesses respond well to treatment and go on to live productive, happy lives.  Many don’t tell others, because they are afraid of stigma.  When people use the term “crazies” around them (or their families), they may feel battered by those words internally but not feel they have enough likelihood of acceptance to respond. Some of those folks smiling and laughing at your words are gasping on the inside.  Whenever events like this happen, they have to deal with the ignorant, hurtful language.  Their fears of being ostracized or rejected (or even attacked) go up. They have trouble sleeping.  Their families feel more stress, which means we are more sensitive than usual to such talk and may over-react.  Please remember that.

I know people get frustrated with the ever-changing rules of politically correct speech.  As John Steinbeck said, “A writer lives in awe of words, for they can be cruel or kind, and they can change their meanings right in front of you. They pick up flavors and odors like butter in a refrigerator.”  For some conditions, it is hard to keep up with which term we are supposed to use and which ones are rude—Steven Pinker calls it the Euphemism Treadmill.  I think of it as a process—words get stinky sometimes and can’t always be rehabilitated, so we change them, but attitudes lag behind and can contaminate the new words too. 

Another problem with ignoring the language?  If people can use derogatory words about an entire group without social disapproval, it tells them something big—it says they might also disregard or even target this group through actions, like defunding mental health care or ostracizing them from the community. Others might just look the other way, the same as they do in conversation.

It would probably be too much to expect us all to pretest our speech constantly—is it true?  Is it necessary?  Is it kind? We don’t need to be the PC speech police either.  But there’s quite a distance between being ridiculously perfect and giving a pass to “You can’t let the crazies win.”

We can’t just change the words, or nothing will get better—we have to change the underlying attitudes.  It is all of a piece.  Reminding ourselves to consider our words gives us a chance to examine our thinking as well. It is not ok to use these words.  We are not that kind of people.

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Filed under mental health

HR 676, Part 8: A Tribute to LS, on Memorial Day


It’s a beautiful (and hot!) Memorial Day, and even though I’m using it mostly to catch up on odds and ends and hang out with my family, I know it is important to remember the day’s original purpose—to honor the memory of those who have died in war.  What do you think of, when you think of war and warriors?  Do you think of the immediate injuries of battle?  Or do you remember the slower, more painful losses of those who return home?  Far too many of our veterans eventually succumb to their wounds of PTSD and related mental illnesses, years and even decades after the formal military hostility has ended.

 

Today, I think of a lovely man, once a family member by marriage.  He fought in the Vietnam War and came home wounded more deeply than anyone knew at the time.  He was an engineer, a father, and a marvelous carpenter.  We still have a wooden lamp he made us by hand, 20 years ago, in his own design.  We shared many family dinners and stories and watched our young children play together.  When his war injuries finally got the better of him, no one could stop it—he became estranged from the family, disabled, and finally, one day we got the call that he was gone.

 

I count his death as both a casualty of war and of the failure of our mental healthcare system.  Whatever the inadequacies we encounter in the US healthcare machinery, the situation for mental health is many times worse.  Some of this is just because no one in the world has found cures for the most serious of mental illnesses, but much of the problem is in our failure to deliver treatments than can and do help.  In honor of those who have returned home from a military war only to die as a consequence of mental illness, let’s review Section 204 of HR 676 on Mental Health Services. 

 

As you can see, it is short and sweet.  Part A says:  “The Program shall provide coverage for all medically necessary mental health care on the same basis as the coverage for other conditions.  Licensed mental health clinicians shall be paid in the same manner as specified for other health professionals.”

 

This is basically “parity”—saying mental health is part of health and can’t be treated differently seems to me a no-brainer, but it continues to be a root problem in our system.  Our main attempt at parity, despite SAMHSA’s very optimistic wording, continues to fall short.   The truth is that we have multiple separate and UN-equal systems of care.  For those with private insurance, panels are limited to certain providers.  Many policies under Alabama’s largest insurer do not cover therapy unless it is by a PhD, leaving out large groups of very qualified and effective therapists who have other professional licenses. 

 

Even when a family is fortunate enough to find a skilled therapist their loved one can relate to, the whole relationship can end if the employer insurance policy (and thus the provider panel) changes.  Many of the policies I see in our office have “carve-outs” for mental health—the insurers pay a set portion of everyone’s premium to another insurance organization, so that patients must deal with an entirely different agency for mental health.  Typically, these specialist insurances have been very hard to deal with.  They use their own criteria for hospitalization, for instance, which are different from the standard-of-care published criteria the doctors use.  We can usually get little help from the patient’s main insurer in dealing with the behavioral insurer.

 

When there is a carve-out, pediatricians and other primary care docs get left out of the loop in treating milder conditions like ADHD or uncomplicated depression and anxiety.  I’ve recently had several children who had been stable and thriving in my care for their ADHD—they had to switch to a psychiatrist for medication monitoring, because their insurance policies have changed and do not have primary care doctors on the behavioral panel.  It made so much more sense for me to care for these children as whole humans—the asthma, the growth and development, and the ADHD are not really such separate issues.  It was easier for the families too, but now they have to add extra appointments to their overloaded schedules. 

 

Many private providers require up-front cash payment and tell the families to file for reimbursement from the insurer.  This allows the providers to charge whatever they want to, leaving families to do battle for uncertain payment.  Many families who have private insurance cannot afford to plunk down $200 a week for therapy and wait months to get some of it back.  So they don’t go.  They come back in a few months with the same problem I tried to get them help for, except it is worse and now harder to treat.  Quick help for mental illnesses is critical—the longer the brain goes on in a dysfunctional state, the higher the chance of long term illness and disability.

 

For those who have public insurance through Medicaid, in Madison County the options are limited.  Alabama Medicaid wisely allows primary care doctors to be paid for mental healthcare, but when the patients’ problems are beyond our training in psychopharmacology or when they need real counseling, they must go to the county Mental Health Center, now overloaded and underfunded.  Waiting lists are long.  Even though our MHC here tries hard to manage on a shoestring and has a director who truly cares about clients and families, it has not been able to keep a board certified child/ adolescent psychiatrist on staff.  For adults, budget cuts have led to a move towards group therapy instead of individual therapy for most patients.

 

The split in private and public systems has had other consequences, on the provider end.  Most of the families I know through NAMI who have loved ones affected by the disabling mental illnesses like schizophrenia or other psychotic disorders have wound up using public insurance, when their loved ones could no longer work.  This means that many private psychiatrists and therapists today have much more experience and skill with the “worried well” than they do with full-blown psychosis.  Many of them no longer even see hospitalized patients.  Patients in public care often see therapists in training, who leave once they have finished that training.

 

There is little patient choice in either the private or public system.  Competition between insurers won’t help, because the insurers must satisfy their shareholders and bottom line—they will continue to find ways of limiting access as a form of cost-control.  The only kind of competition that matters in mental (and all) health has to do with quality of care, and the only way we will ever see the fruits of such competition is for all patients to have access to any licensed provider.  Any form of cost-sharing at the point of service (co-pays and deductibles) would be especially detrimental in mental health—it is the treatment families in my practice seem most likely to put off until they can afford it.  Needing mental health care is still embarrassing for many families, and having an excuse to wait is dangerous.   Payment needs to be in advance, as in the Medicare for All plan, where we all pre-pay through taxes.

 

Part B of this section says the program will favor “community-based care” and that “in all cases the highest quality and most effective care shall be delivered, and, for some individuals, this may mean institutional care.”  If you held your breath (or picketed with us) as Alabama considered closing almost all our state psychiatric hospitals this year, take note of those words!  We cannot continue to put our most vulnerable citizens at risk because of floundering state economies.

 

I do not know if my former family member would have lived—or lived well— had he been in a country with a more integrated and accessible mental health system.  Some problems will always be beyond our reach.  We should not put our young men and women in the armed forces into combat for frivolous reasons—we should all know the human price of our votes for those who will make these decisions. 

 

Honor the memory of those who have lost their personal battles with mental illness today by doing something for those who have yet to fight.  Do something concrete—share this post with friends, call or email your legislators, or talk with a neighbor.  Tell them why we need Medicare for All.

 

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Filed under HR 676 Analysis, mental health

Letter from Bazelon: Alabama’s Mental Health Funding Crisis


Interesting letter to Governor Bentley from the Bazelon people.  This is the law firm involved in the Wyatt vs. Stickney case– if you don’t know about that, there is some good background on it by Dr. Fuller Torrey’s group.  It is the lawsuit that resulted in the tragic consequences of deinstitutionalization in prior decades– the burgeoning population of homeless mentally ill, the dumping of sick people into prisons, and the loss of sick persons to suicide.  It was intended by some involved to force hospitals into better standards of treatment, not to abandon patients entirely– but the consequences were disastrous.

The letter is a clear threat that if Alabama doesn’t fund our mental health, we are about to get sued– again.  Bazelon says Bentley should apply all the funds initially intended for Bryce to use for transitional planning and they seem to think this will be enough.  I am uncertain of that– we need not only funds for transition, including capital costs and training of new personnel, but also for the ongoing expenses of our current and future services.  Using one-time funds may not cut it– we won’t know until DMH releases a clear plan and estimated expense.

Bazelon’s insistance on closing all the hospitals may be misguided– the Olmstead decision says that we should place people in the least restrictive setting possible, and to integrate them into the community if it can be done.  Some people are too sick to make it in the community, no matter how hard we try, until we have a real cure.  More will be intermittently very sick, since relapses happen even while on previously effective medicine, and they must have a secure, safe place to get treatment.  It is possible we could replace the hospital with local crisis stabilization units– we should be open-minded– but they would have to have capacity to keep people until they are REALLY ready for a lower level of care.  Here’s a brief breakdown of what Olmstead requires and does not require, from Iowa– note that it does NOT require all hospitals to be closed!  It just says that people can’t be kept in the hospital longer than they need to be there, if it is possible to serve them in a community setting.  The pitfalls of over-reliance on community settings are severe.  Bazelon is hurting us by over-interpreting Olmstead.

Bazelon has an ulterior motive that conflicts with reality.  They do not believe in commitment, even to outpatient care– they think all patients with mental illness should be left to their own devices unless they are right about to kill someone.  The reality this conflicts with?  There is a well-studied phenomenon in serious mental illness called anosognosia.  People who have this are incapable of understanding that they are sick or need treatment, the same way as some people after a stroke will not be able to believe they have a left arm.  It is part of the illness itself.  Real advocates for loved ones with mental illness have a more realistic approach.  We are definitely not in favor of restrictive setttings when they are unneeded, and we fight for the inclusion of patients in making their treatment decisions whenever possible.  We want our loved ones to be as independent as they can be and to have fulfilling lives.  None of that is possible if they die from suicide or undergo permanent brain damage as a result of inadequately treated illness.

Torrey’s site has a good explanation of why we need approximately 50 hospital beds for each 100,000 population (same as my prior estimate of 140 beds needed for Madison County alone) and a list of capacities per state– notice Alabama is far short.

Bentley and Baugh have promised that they will not close the hospitals until local infrastructure is ready.  If they keep that promise, the transition could go well.  The reason many of us are not reassured by their words is many-fold.  There have been multiple and rapidly changing plans issued from DMH since February, so we are uncertain anything they say is going to remain in place.  They have not yet told us how they will pay for it or how they will apply the 2012 proration to DMH without hurting outpatient services.  At our regional meeting last week, we were told that DMH couldn’t guarantee a timeline because it depended on funding– which is in direct conflict with saying the timeline depends on having infrastructure prepared.

The threat of lawsuit may be the only thing that saves our mental health system.  Will Bazelon be just as ready to sue on behalf of those who become homeless or commit suicide because they have inadequate care as they are to sue for what they consider excessively restrictive care?  Don’t hold your breath.

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Filed under Alabama legislative session 2012, mental health, Uncategorized

Notes from Region I DMH Meeting


Notes from Region I DMH meeting, March 23, 2012, Huntsville Main Public Library, 10 am to 1 pm

 (This may be of interest to those of you who are preparing for mental health cuts, but I am mainly posting it here so local Alabama advocates can review.  DMH= Alabama Department of Mental Health, NARH is North Alabama Regional Hospital.  As I’ve posted previously, the state is preparing to close all the large regional psychiatric hospitals except for criminally committed and geriatric, and move care into the communities.  However, the communities are not ready.   This was the last in a series of regional meetings around the state between DMH representatives and what they call “stakeholders”– family members, consumers, service providers, law enforcement, etc.  It was a LONG meeting).

My general impression/opinion:  DMH came planning to reassure us and give some broad platitudes.  Long on “philosophy” and short on facts.  Peacock told the press she expected us to leave feeling “more open-minded”.  We quickly uncovered that they have NO IDEA what they are going to do—not reassuring at all.  They do not even have an estimated cost analysis or desired timeline.  They are saying that the regional facilities won’t close until local capacity is in place, but in the next breath, they can’t give a timeline because it depends on proration.  So the truth is, they don’t even know if they will be ready before they are forced to close the hospitals because they can’t pay to run them.

 

Lots of use of “I agree” and “I feel your frustration” but the group was not taken in by these therapy tactics.  I suspected the questioners were more well-informed than they expected.

 

I do not think it is DMH’s fault that the legislature is not funding adequately, but I am very frustrated that they are not following the example of other state agencies and being clear that they can’t cover services without $.  They owe us the duty of presenting a clear budget need to the Legislature and a clear time-frame for transition, whether the government provides that needed money or not.  They need to be clear in saying what the consequences of inadequate funding will be. It is unacceptable for them to be so passive in this circumstance.

 

Fortunately, the press did read the release and talking points I sent in advance and were quite pointed in their reporting—they could definitely tell that DMH was not providing the answers we requested.  We also did a 1 hr sign protest in the pouring rain beforehand—made for some great TV footage.

 

Details:

Dr. Tammy Peacock began with introductory remarks/ background.  Said Commissioner Zelia Baugh had planned to come but was in a finance meeting discussing plans to deal with proration.  They do not know how they are going to deal with the 10.6 proration (21.2% cut in next 6 months). Discussed anticipated 29 million dollar cut in DMH budget for 2013.  Said hospital budgets had already been cut as far as possible and that even closing only 2 of them would not be enough to cover a 29 million $ gap.  Said other reason to close hospitals is that the Department of Justice is enforcing Olmstead ruling, which says that individuals with mental illness have the right to live in the most integrated setting they are capable of.

 

Peacock said no one had been comfortable with the October 1 timeline.  They are still not certain of where funding to create the new community infrastructure will come from.  They plan to overlay mobile crisis teams onto local MHC services, work toward tele-psychiatry 24-7, and leverage more federal dollars.  They are not sure of plans for long term care of the most seriously mentally ill.  They are currently talking to other states and federal agencies to get ideas.  It is “not our intention to shift the financial responsibility to the local level.”

 

Peacock said the timeline is extended but they don’t know by how much.   She then opened the floor to questions.

 

Questions/ Comments from floor (my occasionally snarky editorial comments in italics, and interchanges that seemed particularly significant to me in bold– I may have missed some, was writing furiously—please fill in if you notice a gap):

 

 

Q:  If consumers were required to clean their facilities themselves, how much money would that save?  (Really, someone said this—I almost fell out of my chair. Fortunately, it got better)

A:  Consumers would need to be compensated fairly for any work they did

 

Q: Isn’t it a short-term solution to become dependent on federal $?  And the questioner can’t tell when her relative with SMI is stopping meds—he would be capable of killing somebody if off them.

A: Most consumers would be able to live in their homes but some could go to supported housing.  They have been in meetings with HUD.  They will need ACT teams and PACT teams (a larger team) for the most seriously ill.  (Did not answer the question about federal $).

 

F/U Q: But if my relative refuses treatment the PACT team can’t force him, right?

A: No, they can’t

 

Comment: HUD housing is in bad neighborhoods where people prey on mentally ill.

A: This is not about us saving money—reality is that we have 29 million less to spend. (not an answer)

 

Comment:  Concern that outpatient commitment law has no teeth and needs to be revamped. 

A: There will be inpatient care through “different means”.  Alabama just hasn’t been sued “yet” because of restrictive care. (doesn’t seem like an answer)

 

Q: Is the state prepared to help local hospitals become designated facilities?

A: Contact your local MHC

 

Comment (mine):  I disagree that we have too many people in restrictive care and are at risk under Olmstead.  For Madison County alone, if 1.1% of adults over 18 have schizophrenia, national statistics say 5% should be in the hospital at a given time.  That would be 140 at NARH for our county alone, just for schizophrenia.  We have fewer served by the hospital and group homes than should be there, not more—what we need is MORE community services in addition to crisis and group home services.  Told briefly about son’s experience with commitments and difficulty getting community services.  Said that without adequate services at every level, people would cycle through repeatedly and each time they had a bad relapse, they could suffer permanent damage.

Answer:  I agree but we don’t have the money  (that was all she said.  To me, that says she knows good and well that this Olmstead bit is blowing smoke.)

 

Q: Can you elaborate on the timeline for hospital closings?

A:  The Commissioner is working with the Governor and hopes to announce next week.  We are not going to close the hospitals until communities have identified local beds.  Says there has never been a July deadline at NARH (for stopping new civil commitment admissions) and doesn’t know where we heard that.

 

Comment:  A son has been committed 4x for mania but in between is fine.  Risk of being hurt/ arrested when manic.  Takes 3 to 4 weeks before safe out of a confined place.

 

Comment: Our Place (drop in center in Huntsville) needs more $ for peer-led services

 

Q: If Judge says a person is committed to the hospital, where will they go if no hospital?

A: No closings until we have local beds

Q: Where is the funding for new facilities coming from?

A: We aren’t going to put the bulk of our money into bricks and mortar.  There will be “repurposing” of existing structures.  We can’t do it without bridge $. (basically, they don’t know)

 

Comment:  The cost of renovation is high—must do expensive items like replacing window glass, etc, not cheap

A: I agree

 

Comment:  “It sounds like you’ve decided to sell us out”

A: That’s not my perspective

 

Comment:  We need more research and funding to find early treatment for SMI

 

Comment:  Concern about consumers who will be discharged too soon because they have learned what to say—doesn’t think ACT/ PACT teams maintain outpatient control without offending constitutional rights

 

Comment:  the community is uneasy because of how the information was released.  People don’t have enough info, being given conflicting information, changing info–  DMH should have given better/ more complete info

A: I agree.  Hard to be definitive when we don’t know

 

Q: Why didn’t DMH prepare for this earlier—they knew the budget situation was coming long before now

A: “It isn’t cost-cutting—nobody has $” (how is this an answer?)

 

Comment from consumer:  NARH helped me tremendously

A: Closure is on hold until access at community level

 

Q: What is the probable time of hospital closure?

A: We don’t know—it depends on proration and funding.   MHC’s have been asked to give a plan for what they need.  There is a philosophical change to move to community care. (Philosophy, Shmilosophy… give us some facts)

 

Q (me): How much time and money do you actually NEED to do this right?

A: Can’t answer—“we can’t control the process”  “we don’t make a wish budget”

 

Q: Is there a 5 year plan for how to evaluate/ monitor this transition?

A:  Didn’t answer.  Just said they would get feedback from MHC’s.

 

Q: Is there a plan to meet individually with MHC’s?

A: We have been meeting collectively, and some individual meetings are in process

 

Q: Can local hospitals serve as crisis stabilization and will $ be available to them?

A: talk to your MHC

 

Comment:  Georgia did a similar transition to community care, and it was fine until patients decompensated and they did not have enough places to send them.  Became a revolving door system.

A: Isn’t it already a revolving door system? (Wow—she really said that.  How is that a helpful answer?)

 

Q: Have you pressured the fed govt for $?

A: Commissioner hasn’t asked yet, doesn’t know how many housing vouchers needed, “a lot of data hasn’t been gathered”

 

Comment: Real stakeholders have not been brought into this process.  Crisis houses have failed in other states

A: They have applied for housing grants (first, doesn’t answer the question—second, seems to conflict with answer above but I may be misunderstanding)

 

Comment:  Illinois closed a hospital in one area to rely on community services, then closed community services, and now churches are doing a rotation to care for the mentally ill (I have not seen this in print)

 

Q: Have you coordinated with the Sherrif’s Depts, State Police to find out needs?

A: Not sure.  Did meet with Probate Court committee

 

Q: What about Deaf?  Are interpreters in plan?  Commenter noted that her local hospital was often not staffed to assist her 24-7.

A:   Possible regional capacity. Haven’t figured it out (Note—there was a Sign interpreter present)

 

Q:  The responsibilities of the Community Mental Health centers are increasing—how will we fund all this?

A: Never underestimate the power of your vote.  (By this point, I think she realized we were serious)

 

Q: How will the MHC’s handle the 10.6% proration and handle new administrative responsibilities to develop these plans? 

A: “No one has told the MHC’s they will have a 10.6% cut”.  (umm… you said earlier that the hospitals could not be cut further at 25% cut—this will be a 21.6% cut over the rest of the fiscal year—how could it NOT come down on the MHC’s? Is there some secret department we don’t know about?)

 

Comment:  You can’t answer our questions and can’t give us a plan.  You haven’t done a cost-benefit analysis.

A: I understand your frustration

 

Comment:  State has been trying to get out of hospital business for years.  ECM (Eliza Coffee Memorial) hospital is limited to short term only.  Communities have trouble keeping psychiatrists to staff local hospitals.  How many on the planning committee are probate judges, family and consumers? 90% of commitments are recycled. (I didn’t hear the answer, sorry)

 

Comment: People get bumped from group homes to communities and then their families bear the burden.

 

Comment:  It doesn’t just take resources to begin this project but resources to sustain it.

 

We broke into groups and discussed our needs, then reported back.  I could not see the written lists of the other groups, but the verbal reports were very general—just basically needing peer support, law enforcement training/ support, more community capacity.

 

Madison County MHC group requested a long list of items by process of brainstorming, which I have because I was in that group.  Note that Brian Davis, who has spoken to us about his own perspective previously, gave us a chance to tell HIM what we think we need.  Thanks, Brian!  I don’t know if the other groups did it that way.

 

1) 60 additional group home beds in addition to present capacity

2) 100 more supervised apartments and $ for setup/ furniture, etc

3) Ability to use larger than 3 bed homes if necessary for economy of scale

4) Private rooms in the group homes, for consumers who relapse from stress of no privacy

5) A mobile psychiatrist available 24-7

6) More peer support, another drop-in center

7) Young adult Peer Support and transitional support

8) Maintain current services at Huntsville Hospital

9) Consumer classes for communication skills/ assertiveness

10) A crisis stabilization unit ready before NARH closes

11) More timely access to appointments at MHC

12) Recruit/ hire more psychiatrists

13) Try to get some of the oil money for infrastructure

14) Respite beds for short term care, if family needs to be out of town or are ill

15) Flexibility in policies about who needs therapy and med monitoring

16) Mixed opinions on tele-psychiatry—some in favor, some worried about pinning too many hopes on it

17) More services for autism/ Asperger’s

18) DMH needs to tell the Governor and Legislature how much $ they NEED and not just take what they get

19) Transportation for consumers

20) More family members involved at DMH level in planning

21) More local planning sessions/ communication.  Don’t call the meetings “stakeholder” meetings—should be town hall/ forums and should be well-publicized.  The whole community is affected

22) More commitment from local government to be involved

23) Increase the skill level of MHC therapists

24) Some remaining capacity in the state for long-term hospitalization

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Filed under Alabama legislative session 2012, mental health