As many of you know, over the last three years, we have raised funds to pay for mental healthcare for families in need. We appreciate all your support in helping us raise over $140,000 however, even at that rate, we can only help 1-2 families a year.
We want and need to do more.
We are very excited to report that LAF will be supporting McLean Hospital in establishing its very first PACT program to help more families every year. Also a first, this program will include a scholarship bed. In addition, we believe health insurers may be interested in covering care of this type in the future.
The first step is to get the program established and that requires philanthropic support. We have commitments for much of the amount needed, but still need to raise $100,000 over the next two years.
To do that, we need your help.
PACT (Program of Assertive Community Treatment) is a system that serves people with major mental illness, including schizophrenia and bipolar disorder, and is designed to support those at risk for repeated hospitalizations or who have had recent homelessness.
Google “stereotype stigma discrimination” and what do you find? The entire first page of hits is for mental health and mental illness. We had Mental Health Awareness Month in May. We had Mental Health Awareness week Oct 2-8. Then World Mental Health Day on Oct 10th. Maybe we need so many awareness events to get mental illness off the first page of hits for this combination of phrases.
Let’s consider the dictionary definitions,
Stereotype: to believe unfairly that all people or things with a particular characteristic are the same
Stigma: a set of negative and often unfair beliefs that a society or group of people have about something
Discrimination: the practice of unfairly treating a person or group of people differently from other people or groups of people
So how do they fit together? Stereotype is the grain of truth that reinforces stigma and enables discrimination.
Stereotypes are tricky things. There’s usually a grain of truth hidden in them. An observation that <insert group of people here> typically have <insert characteristic here>. The stereotype comes into play when asserting that a specific member of that group personally has a characteristic without any evidence and most likely not even knowing the individual. Stereotypes have another thing going for them. That grain of truth? Well it’s usually something negative. Take for instance the stereotype that people with severe mental illness (SMI) are violent. Reading the Boston Globe Spotlight article, it’s clear that happens. They report that in a ten year period, 116 people with severe mental illness were accused of killing 139 individuals, mostly family members. Without question this is tragic in its own right, but the reporting reinforces a stereotype. Consider this. Right in the middle of that time period, NAMI published these figures for Massachusetts:
Massachusetts had 6.5 million residents. Of those, 211,000 were living with SMI.
Let’s do the math: Approximately 3% of the population in Massachusetts at that time was suffering with SMI. Making the assumption that the SMI population between 2005 and 2015 was essentially a stable number, that works out to .0005% (yes that is three zeros before the percent!!) of people in Massachusetts with a severe mental illness who were involved in a homicide.
The stereotype reinforced by the article is that those with severe mental illness are likely to be violent. That seems like a pretty small percentage for labeling a large group. Wouldn’t you call that unfair? It’s certainly a stereotype to be afraid of being killed by any individual person you meet with severe mental illness. And yes, that does include the homeless person talking to themselves on the street.
Which brings us to stigma. If this population is likely to be violent, why wouldn’t you be afraid to be around them? You certainly would want to distinguish yourself from them. Look for all the ways in which you are not like them. Avoid identifying any commonality; keep yourself safe. Safe from worrying about something like that happening to you, your family, or others you care about. Justified in keeping yourself safe by avoiding eye contact, acknowledging them or giving them any other sense of belonging to the community.
So now, through the “validity” of a stereotype, we’ve applied stigma which has (unfairly) identified those stigmatized as “other.” And to be clear, that other-ness is in a negative context. This is not – XYZ group is better. It’s most certainly that this group is worse than you. Moving us to that place where we don’t practice acts of human kindness. These feelings allow us to not help a family in the neighborhood by driving carpool or dropping off a casserole while they deal with the burdens of finding treatment for mental illness. The types of neighborly things we would normally do. In fact, we are more likely to avoid those friends and neighbors brave enough to share a mental illness and crisis.
And this is how we get to discrimination. Throughout history, when horrible injustices are perpetrated, it’s preceded with a campaign to identify and denigrate the “other.” That includes everything from the Crusades, slavery, the Holocaust, and the genocide in Rwanda to name just a few. And in our modern society, this identification of “other” which is actually “less than,” even sometimes “less than human” leads to not just discrimination, but our ability to turn a blind eye to that discrimination.
For example, read the story of the Seattle Tree Man. This is an incident where for 25 hours a man clearly in the throes of a psychotic episode, was refusing to come down from a giant sequoia. All concern and outrage was focused on the tree. The discussion was around the cost of the damage to the tree and whether or how to charge him with a crime and get him to pay for the damage. No one was concerned for his wellbeing. No one even brought up the failure of the mental healthcare system to provide him with treatment. We would not treat our animals this way. That is the face of discrimination. It’s a hop, skip and a jump from “benign” stereotypes to full blown discrimination.
It’s past time to reform our attitudes and our mental healthcare system and treat our fellow human beings as exactly that – human beings. Start with yourself. Make eye contact. Recognize the human being. Raise your voice every chance you get to denounce discrimination. You can start by calling out stereotypes and stigma; demanding treatment not prosecution for those in need. Don’t wait for the awareness month, week or day, to raise your voice, to speak out.
Because it’s the right thing to do. And because you too could be stereotyped, stigmatized and discriminated against. It’s a hop, skip and a jump to being considered “less than.”
At the National Alliance of Mental Illness (NAMI) convention in Denver this month, I met a woman whose son is in his 20's and became psychotic about a year ago. He currently lives in her closet, won't eat or come out, and she describes him as feral. In desperation, she contacted police, who picked him up & took him to the ER. They found a psychiatric bed in a hospital about 2 hours away. He was there 4 days and then discharged, to the streets. Of course, she went and picked him up.
Also at the convention were vendors with lots of terrific programs to help people like this woman's son. A reasonably priced one costs $16,000 a month and was even located in her town. She can't afford that. She and her husband have health insurance that covers their son, but that doesn't translate to meaningful care. He is back in the closet in her house.
My only suggestion was to involve the news media and maybe the human interest angle would provide a fund to pay for his care at one of those private-pay programs. That just doesn't seem right!
There were also terrific presentations on applying RAISE (Recovery After an Initial Schizophrenia Episode) research for First Episode clinics and how amazing these new approaches are when treatment starts within the first 74 weeks of psychosis. There is hope through treatment for people like this young man. The trick is getting access to the treatment. NAMI is working hard to get more clinics opened and funding through block grants, but the need is real and very great.
What can you do?
Contrary to popular opinion, and even my own perception, our legislators really do care a lot about what we think. According to a recent webinar, individualized contact from constituents influences our legislators anywhere from 92-94% of the time. Lobbyists on the other hand, have an 83% level of influence.
Things are ripe for change and you can feel it. On July 6th, H.R. 2646 - Helping Families in Mental Health Crisis Act - passed in the House with a vote of 422-2 in part due to a large number of constituent voices raised on Twitter (see #HR2646). Senate democrats did a sit-in at the end of June to raise voices on gun control which also had a huge amount of social media support (see #NoBillNoBreak).
There are more ways than ever to have your voice be heard - phone, email, letter, Twitter (use trending #'s and the legislators @name), Facebook (follow your legislator, post to their page), and of course, your vote in November.
In spite of the resounding victory for mental health in July, there's a lot to be done. The Senate vote was planned for September, but now at least one senator is attaching gun related language to derail it. And, as we all know, there is no bill without both sides of Congress.
So raise up your voice and contact your Senator. Tell them you care about comprehensive mental healthcare. The people like this young man deserve the care they need. Find your Senator's office information here.
"Studies show that people with a serious mental illness are no more prone to violence than anyone else — when they get the help they need"
Really wish that the lead-in to this amazing story by the Boston Globe Spotlight team had been
"STUDIES SHOW THAT PEOPLE WITH A SERIOUS MENTAL ILLNESS ARE NO MORE PRONE TO VIOLENCE THAN ANYONE ELSE — WHEN THEY GET THE HELP THEY NEED"
The article is a long read and just the first part of several, but take the time to read it. Then come back here and read my email to them (below).
Overall, it's an amazing thing to have the "megaphone" of the Spotlight team on the topic of mental healthcare in Massachusetts (and beyond). We really are having a long overdue conversation reviewing the results of changes that started many years ago. Those ideas were meant to create a better outcome for those with mental illness. I hope this time we can learn from mistakes quicker and adjust, rather than plod along without really learning from what's working and what isn't.
I write this email with deeply mixed feelings. As the parent of a son with schizophrenia, I have lived the choices and challenges described in the article and know the truthfulness of the experience. This is not the first time one of Michael's articles has moved me (I wrote to you after the Peter Minich story a few years ago).
You’ve gotten over some pretty big hurdles. You or your loved one has a diagnosis (no small feat quite often). Now there’s a recommended treatment plan. It’s been hard, confusing and very stressful. And probably took longer than you would have hoped. Whether dealing with physical or mental health issues, this is often the hardest part. But now there’s some clarity on actions to take and that can bring some relief.
And then, bam, everything comes to a standstill when you discover that either your insurance just plain doesn’t cover the treatment or somewhere in their process they have deemed the treatment “not medically necessary.” How in the world are you going to pay for this? It’s not bad enough you have to deal with the illness and treatment, but the finances add to the stress.
Of course, it sometimes happens that insurance companies deny claims for treatments for physical medical treatment, but this report by NAMI from April 2015, reports that mental healthcare claims are denied twice as often as physical healthcare claims. 60 Minutes did a segment in Dec 2014 and it has not gotten better since then.
I recently met a woman who did not take “no” for an answer when her insurance company denied her son the care he needed and was entitled to. Trudy is a strong and inspiring woman who took on the insurance company and won. You can read her full story here. Even more inspiring is how she now takes every opportunity to speak out and point out that “deemed medically necessary” is a catchphrase that allows insurance companies to avoid paying for pretty much anything. For any type of illness. Until we eliminate those terms, people are going to need to fight back like Trudy.
There are other people tilting at the windmills and winning. Another strong and persistent woman known as the “Insurance Warrior” spends her time helping others with all types of illnesses. It turns out that insurance companies expect that people will appeal claims that are denied, so if you’re not getting the coverage you need and are entitled to, file an appeal.
In addition, there is the Mental Health Parity Act of 2008 and you can learn more about parity - what it is, how your state is doing and what you can do to get help at ParityTrack.org. And of course, here at The Living Assistance Fund, we are bridging the gap to ensure you get the treatment you need.
So “be like Trudy”: take the fight to your insurance company, your state, speak out and up (stigma is our enemy in getting what we are entitled to) and support nonprofit organizations that help.
Every illness, physical or mental, is the combination of a genetic predisposition and an environmental trigger. My aunt is 93 years old. She smoked heavily from her early 20’s until 86 years old when she had triple by-pass surgery. She has never gotten lung cancer. Pretty clearly, she doesn’t have the genes that respond to that environmental trigger. While we don’t know how to identify all genetic predispositions, it’s pretty clear when two individuals are exposed to the same environmental trigger and one develops an illness and one doesn’t, that genetics is playing a part.
In the arena of mental health, we are only just validating how true this is. Experts no longer believe that addiction is a matter of will power or that people should be able to “snap out of it” when depressed. More and more the research shows that these are brain diseases and new genetic discoveries like this one for schizophrenia prove that out. The persistence of old perceptions about will power and being “weak” continue to mean there is plenty of stigma around mental illness.
But consider this - who hasn’t been anxious before a big test? Or depressed after a death – sometimes it doesn’t matter how close you may have been. The world mourned Lady Diana together. What if we really start to think about those events as environmental triggers? There are a couple of benefits to that, including an acknowledgement that most people fall on the spectrum of having “symptoms” of mental illness. This article from a few years ago talks about why we shouldn’t use mental illness as figures of speech. That saying “I’m OCD” is possibly trivializing a serious mental illness. I’d rather say that’s an acknowledgement that we’re all in the same boat. That we all fall somewhere on the range of behaviors associated with mental illness. Stigma is about making someone the “other”, understanding that we share these behaviors means there is no "other."
Look at it this way. Everyone has cholesterol. For almost everyone, certain environmental triggers are known to increase cholesterol (like not eating well or not exercising). We are all checked regularly for our cholesterol levels. The first action is to mitigate those environmental triggers if they exist (eat better, exercise more). But for many people, their cholesterol is high no matter what. High cholesterol runs in their family. When the number consistently tops 200 and the LDL/HDL ratio isn’t good, medications are prescribed. For that person, high cholesterol has become important enough to require treatment.
Applying the same logic to anxiety, most people have anxiety about something: speaking in front of a large group of people; going to a party where you only know the host, etc. If you are still able to do those things or they don’t interfere with how you want to live your life, then no treatment is necessary. But what if your anxiety makes it impossible to leave your house? That probably interferes with your quality of life and should be treated. It’s easy to see, though, how the difference between “normal” and “needs treatment” is a question of where you fall on the spectrum. Is it interfering with your life?
So the analogy between cholesterol and anxiety wasn’t really the same in one particular way. For cholesterol, we have early screening tools. We have a blood test that helps our doctors know when we are about to be at risk. The first clue that maybe treatment would help isn’t a heart attack. For anxiety, we don’t have good tests yet; our doctors aren’t really screening for it, and we are not self-identifying before it’s a paralyzing illness (i.e. you can’t leave your house). One of the biggest reasons we don’t self-identify is stigma. It’s hard to acknowledge that something like anxiety is interfering with your life until it’s a really big problem because others think you should “snap out of it” or you have a weak personality. We really need to stamp out these perceptions, first and foremost by understanding that everyone lands somewhere on the spectrum. Everyone has moments of experiencing “symptoms” that often don’t require treatment. And just for the record, it’s easiest to talk about this in the context of anxiety and depression since pretty much everyone has experienced those “symptoms.” But it’s just as true for psychotic disorders. Did you have an imaginary friend as a child? Have you ever heard a voice in your head – maybe your mother’s – cautioning you about something?
Truly, we are all human beings with the same brain and body mechanics. When and whether we need treatment for any illness, mental or physical, is primarily about luck – whether or not our particular genes meet up with a particular environmental trigger. Let’s acknowledge that and eliminate the stigma of mental illness. You can start by helping someone you know (1 in 5 Americans currently suffer with a mental illness) the same way you would for a physical illness – bring a casserole, drive a carpool, volunteer support. Let them know it’s okay to openly tell their story. Treat them as you did before you knew they had an illness.
Reading a magazine, I saw an ad for the book “Thrive: How Better Mental Health Care Transforms Lives and Saves Money.” The title obviously piqued my interest and I’ve picked up the book. With detailed statistics, data and analysis, the authors make a strong case for better funding of mental health care. Most particularly, they clearly demonstrate that it is way more expensive to not pay for mental health care than to pay for it. Quoting from page 11 (didn’t take long to get to the heart of it):
“It turns out that mental health has a huge effect on physical health, and thus on health care costs. … Controlled trials show that if you get psychological therapy, you go to the doctor for physical ailments much less often than those who remain untreated. The resulting savings are large enough to fully cover the cost of the psychological therapy.” 
What’s that? You go to the doctor less often for physical reasons if you have received appropriate mental health care? This makes sense as it’s common knowledge that there’s a link between mental state and recovery from physical ailments. How many blogs, like this one, have you read about attitude mattering when battling cancer?
The problem is the way our health care and mental health care payers have structured reimbursement. The system is rigged. Many of our insurers use a mental health “carve-out.” If you’ve ever sought coverage for counseling or psychological treatment, you are probably aware that your primary health care insurer (someone like Blue Cross Blue Shield) actually refers you to someone else for mental health care claims and pre-approvals (someone like Optum). This system creates the situation where each insurer is held accountable for keeping costs down in their sector of care. The fact that overall costs are dramatically reduced by providing mental health care becomes invisible. It appears cheaper to deny claims and coverage.
In “Thrive,” the authors go on to support with facts and figures, the efficacy of treatments like Cognitive Behavior Therapy (CBT) is low cost for many of the most prevalent illnesses: depression and anxiety disorders. In fact, CBT is successful 50% of the time over the course of only 16 sessions at an average cost of $2,000! This pokes a very large hole in the justification for carve-outs – that these illness are chronic and open-ended and therefore very costly to treat.
Of course, there are chronic, long term mental illnesses. But if treating mental illness reduces physical illness, at a rate that pays for mental health care, then the bottom line is that it’s cheaper for insurers to pay for mental health care than not. So why aren’t they? At a minimum the practice of carve-outs creates an environment where it’s hard to see the holistic financial benefits to insurers. This may be why many insurers are stalling on paying claims as required under the Mental Health Parity and Addiction Equity Act passed in 2008. We can only assume they think it’s cheaper to ignore the law than abide by it. Reading “Thrive,” has illustrated to me that's not the case. 60 Minutes did a segment on mental health claim denial rates in December 2014, 6 years after the law was passed. Now we’ve been waiting for eight years. It never made sense morally (it's the law after all), but now it's clear there's really no excuse.
So what can you do? Get the message out that parity is cheaper than denying mental health claims. Connect with The Kennedy Forum who is working to ensure the full implementation of the Parity Act. Find out how your state is doing in implementing parity. Speak out on Facebook & Twitter by sharing this blog and ParityTrack.org. Raise your voice to demand parity on both the state and federal levels. Cheaper and better – now that’s a win-win.
 Layard, Richard & Clark, David M. Thrive: How Better Mental Health Care Transforms Lives and Save Money; Princeton University Press, Copyright 2014. Page 11
 Carve-out: a service not covered in a health insurance contract. It is usually reimbursed according to a different arrangement or rate formula than those services specified under the contract umbrella
Tomorrow - Dec 1st - is #GivingTuesday marking the time of year for reaching out to support those who are less fortunate. This year, we are thankful to have been instrumental in the creation of a new step-down program at McLean Hospital.
This more affordable residential program will allow us to stretch your donation and support to help more families. Even more exciting, this program will include a scholarship bed, allowing us to more than quadruple our ability to help families each year.
Making this program a reality requires philanthropic support. Please consider making a donation to The Living Assistance Fund before the end of 2015 to make this new program a reality in 2016.
Join the voices being raised to create the political momentum to make a difference in how we handle behavioral health. Check out the Now Campaign and these facts
Follow the discussion on Twitter with #NOWoutloud
Yes, yes, yes. If you read our earlier post on the statistics of mental illness in this country, many of the numbers cited by John Oliver will be familiar. But this video is still well worth watching: