We Need to Talk About Mental Health

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We need to talk about mental health. We need to talk about mental health even if makes us uncomfortable. We need to talk about mental health even if we want to ignore it. We need to talk about mental health in a manner that can’t be cut down to a thirty second sound bite. We need to talk about mental health the way we talk about physical, which is to say we need to talk about it seriously.

We need to talk about how more than half of American adults with mental illnesses receive no treatment. We need to talk about the barriers they face to receiving treatment. We need to talk about how quality treatment is cost prohibitive and how low-cost services are overwhelmed by people in need. We need to talk about how mental health professionals are being asked to do more with less even when it’s detrimental to their clients and to themselves.

We need to talk about the costs of mental health and not only the economic one. We need to talk about the social costs. We need to talk about the pain that people with mental illnesses live with and the pain their loved ones carry. We need to talk about caregiver burnout and the dangers it presents. We need to talk about suicide. We need to talk about child abuse. We need to talk about domestic violence.We need to talk about substance use. We need to talk about all the horrible things that are so often comorbidities of mental illness but no one is willing to acknowledge.

We need to talk about incarceration. We need to talk about the criminalization of mental illness. We need to talk about a criminal justice system that is not designed to meet the needs of people with mental illnesses. We need to talk about how the mentally ill were once warehoused in state hospitals and how they are now warehoused in state prisons. We need to talk about how instead of receiving treatment and rehabilitation they are simply punished and then released from prison only to return again because their symptoms are not managed.

We need to talk about the lack of crisis services. We need to talk about how calling 911 brings the cops to your door but not someone with mental health training to assess crises. We need to talk about how Emergency Rooms “treat them and street them” no matter the severity of symptoms or the risk of harm.

We need to talk about change and then we need to demand change.

For the Record

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I have a series of mental health diagnoses. I have a veritable alphabet soup behind me, so please don’t think for a second that I’m unaware of mental illness or the stigma of mental illness. I live it. I work with it. I provide direct services. I conduct home visits. I’ve studied it. I am not arrogant enough to assume that my experience with mental illness is everyone’s experience with mental illness, so no, I don’t speak for the mental health community. I speak for myself, which is why I am careful to utilize “I” statements.

I work with people who are difficult. Some have criminal backgrounds. Some have committed crimes that are unspeakable, and I still get up in the morning and work with them because they’re human. It’s not that I’m a saint or a martyr, but because I’m also human.

 

“Compassion will cure more sins than condemnation.”

Henry Ward Beecher.

An Open Letter to the Thinking Person’s Guide to Autism

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I want to preface this by saying that I appreciate the advocacy of your organization on behalf of autistic people. You provide valuable, scientifically based information about autism, and have made the effort to have a professional and credentialed scientist on your editorial board.

Unfortunately I cannot say the same regarding the information that your site provides in regards to mental health, suicide, and filicide. Upon reviewing the members of your editorial team it became apparent that there are no editors possessing credentials that render them experts on mental health. Unless I am mistaken no editor is a psychiatrist, psychologist, social worker, or psychiatric nurse. It deeply concerns me that editors are then engaging in conversations about mental health, suicidality, and filicide without having any expertise or professional oversight. Your organization is considered credible by many people including other professional organizations. Your editors speak and write with the weight of an established organization behind them but without any credentials, training, or academic research supporting their claims.

I encourage you to seek out a licensed mental health professional to serve on your editorial board or at the very least seek out a licensed mental health professional to provide the same kind of professional and academic oversight that your science editor provides. From a professional and academic standpoint, filicide and suicide are complex issues with both personal and societal risk factors and contributors. Filicide and suicide do not occur in a vacuum. There are well-documented societal risk factors for filicide and suicide, including the cases of parents who murder neurotypical and non-disabled children.
I have also reviewed the emergency resource guide that your organization promotes. The guide contains only general, national hotline numbers. While it is an admirable start, the information as it is currently presented is unlikely to be helpful to someone exhibiting sucidal and homicidal ideation. A demand is being placed for rational behavior on someone who is most likely exhibiting irrational thought patterns and behaviors.
I would like to explain what occurs when someone contacts 911 or CPS while they are in crisis. In regards to contacting 911, responses and laws vary among states and localities. In my state what typically occurs is that the person exhibiting the homicidal/suicidal ideation is transported to the nearest Emergency Room. The person cannot be released from the Emergency Room without being evaluated by a psychiatrist. If the person “passes” the evaluation, then they are released from the hospital. Most of the time patients are not admitted. There is an acute shortage of psychiatric beds available, and doctors face immense pressure to discharge patients even if they are possibly a danger to themselves or others. There is no guarantee that the person will be admitted to the hospital or prevented from returning home to their child.
When CPS is called there is no guarantee that a report will even be taken. Our state operates as such that CPS phone calls are directed to State Central Registry located in the state’s capital. The phone operators have the discretion to decline or accept reports. If a report is declined, theoretically the parent could hang up the phone and call back, hoping to reach an operator who will file a report. It should also be noted that parents call a different hotline than mandated reporters (teachers, nurses, social workers, doctors, etc.). The hotline that is open to the general public is not as well-staffed nor are the reports usually taken with the same sense of urgency. Unfortunately it is believed that reports from mandated reporters take precedence over reports by families and community members.If CPS accepts the report then a caseworker will conduct a home visit within 24 hours. There is no guarantee that the child will be removed. Removal is uncommon, and the family is more likely to receive a referral for what are called preventive services. Preventive services aim to stop a child from being placed outside of the home. Sometimes they are sufficient, sometimes they are insufficient.
Again, this is why I encourage you to work with a licensed mental health professional who can provide not only insight to human behavior but also to the legal and societal procedures. The same academic rigor that your organization affords to science should be afforded to mental health.
Respectfully,
Social Worker
Aside

It’s April which means that it’s Autism Awareness/Acceptance month. Everywhere you go there are blue light bulbs, blue t-shirts, even a blue Empire State building. It’s also a great time for organizations to solicit donations. The big question is where should you donate? There are many choices, and of course Autism Speaks is probably the first organization most people think of. AS gets air time for public service announcements, celebrity endorsements, and partnerships with other big name organizations. Autism Speaks has partnered with Major League Baseball and Sevenly to raise money among other things. People like to buy stuff, and they like to feel good about the stuff they buy. If they can work in a charitable donation in the transaction then all the better.

Autism Speaks is not without controversy. Many people including autistic self-advocates and parents of autistic children disagree with some of the positions and tactics utilized by AS. I’m not here to reinvent the wheel. Other people who are more eloquent than I am have already touched on this subject:

http://blog.thearc.org/2013/11/16/open-letter-suzanne-wright-co-founder-autism-speaks/

http://www.huffingtonpost.com/2009/11/09/i-am-autism-advocacy-vide_n_351296.html

Two of the most vocal opponents of AS are the Thinking Person’s Guide to Autism (TPGA) and the Autistic Self Advocacy Network (ASAN). Aside from the ideological differences, TPGA and ASAN object to how AS utilizes its funds. You can find statements to that effect below:

http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf

You can also find third party data on AS’ financials here:

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=12720#.U0BrmFfHt2o

 

Most of the money donated to AS does not go to autistic people, their families, or communities. Most of it goes towards fundraising expenses and salaries. That much is true. ASAN accuses Autism Speaks as being “financially irresponsible.” I would tend to agree with that assertion. The problem is that neither TPGA nor ASAN are financially responsible.

TPGA’s questionable status as a 501(c)3 has already been covered here: http://theconnorchronicles.wordpress.com/2014/02/01/is-tpga-committing-tax-fraud/.

Since that post the Myers-Rosa Foundation/TPGA has commented on their tax status here: http://www.myersrosa.org/p/about.html.

ASAN is a legitimate 501(c)3 organization and potential donors can view their 990 from 2011. I was unable to locate the 990 for 2012, however I don’t take that to mean anything sinister. The Autism Speaks data above is also from 2011. A breakdown of ASAN’s expenditures from the 2011 fiscal year can be found here as well as a pdf of their 990:

http://non-profit-organizations.findthebest.com/l/1786400/Autistic-Self-Advocacy-Network

Clearly ASAN does not have nearly as much money as Autism Speaks, however the breakdown still raises questions about how money is being used. A lot of money is not going towards programming but to staff. Their total revenue for 2011 was $272,832. Staff expenses alone accounted for $138,404.00 or 50.7 percent of their total revenue.

 

Compensation of Current Officers $37,000
Other Salaries and Wages $89,117
Payroll Taxes $12,287
Professional Fundraising Fees $0
Other Expenses $60,888

The salaries drawn by staff are undoubtedly modest, but it’s clear that half of the budget was consumed by staff expense. This kind of spending pattern is similar to Autism Speaks only on a much smaller scale. Is it fair for one organization that barely funds programming to attack another organization for barely funding programs? The ideologies are different, the numbers are different, but it appears that the outcomes are quite similar.

 

More Money, More Problems: Not All Nonprofits are Created Equal

Pay No Attention to the Man Behind the Curtain

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I am almost (almost!) done with my internship at Agency X. It’s grueling. It’s exhausting. I spend more hours there than I’m mandated to, and I end up taking work home with me. I carry the same caseload as a full time employee. I am not paid. Most days I don’t get a break for lunch; instead I shovel food into my mouth as I drive from one house to another.

One of my clients was recently removed from my program due to some serious health and safety issues. I thought we were going to get the client the help they so desperately need. I thought the client would be placed in a group home with the level of care that their symptoms and behaviors warrant. That is what I was told. I have documentation. I have notes. I made arrangements.

Today I was informed that a meeting took place yesterday. I was only asked to join the meeting about an hour before it began. Everyone else had arranged the meeting much earlier. I had to attend another meeting so I was not included. My input was not important. It was decided that the client would remain in my program. It was decided that I can continue making multiple visits to the client each week.

I managed not to cry until I got home. I’m so angry, and the words just won’t come out. This is a huge disservice to the client. This is a huge disservice to me. And no one cares because it’s all about money and numbers and not about people.

Passing the Buck: Where Does it Stop?

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There’s recently been a media circus in regards to Adam Lanza, his father, mental illness, and autism. There’s finger pointing, there’s denial, there’s outrage, and there’s plenty of speculation. I did not treat Adam Lanza. I did not know him. I cannot diagnose him, and frankly I’m always skeptical of postmortem mental health diagnoses. Don’t even get me started on modern professionals proposing diagnoses for historical figures. Unlike disorders like cystic fibrosis or Down syndrome there is no genetic or laboratory test to diagnose autism or schizophrenia or depression or the list goes on. At best we make diagnoses based on observed and reported behaviors, diagnostic criteria set by the American Psychiatric Association, and clinical judgment.

It’s not an exact science. It’s subjective. Where one clinician sees one disorder a different clinician sees another.

Adam Lanza is just one example of the inexact science of diagnosing and treating mental and neurological conditions. The autism community has been quick to cry that Lanza was not autistic. The mental illness community has been quick to cry that Lanza was not mentally ill. Neither autism nor mental illness fully explain what happened in Sandy Hook. Neither autism nor mental illness is at fault for Lanza’s actions. This argument is just a manifestation of a much, much bigger problem.

Autistic people can have mental illnesses. Intellectually disabled people can have mental illnesses. Developmental disability and mental illness are not mutually exclusive, despite what most people (want to) believe. There is often an intersection, and it’s a messy one at that. There are no traffic lights, no police officers directing cars, no road signs, nothing. It’s a massive, multiple car pile-up that we just can’t help but stop and stare at, but nobody does anything to prevent further accidents.

In New York State mentally ill people are served by the Office of Mental Health (OMH), and developmentally disabled people are served by the Office for People with Developmental Disabilities (OPWDD). People who carry a diagnosis of autism and a diagnosis of a mental illness occupy a strange limbo. They are typically excluded from OPWDD programs due to their mental illnesses, and they are typically excluded from OMH programs due to their developmental disabilities. Each agency claims that the other is responsible for paying for and providing services to this population. In the end no services are provided.

If there’s any hope of receiving services then one of the diagnoses must be expunged from the records. When I worked in the OPWDD system that usually meant that the mental illness diagnoses were stricken from the record. Now that I work in OMH I see the developmental disabilities diagnoses discarded. Just because the diagnoses are changed doesn’t mean that the needs of the clients have changed. It just means that some of their needs will be ignored in the name of funding.

Most of my clients are dually diagnosed. Agencies and treatment teams don’t acknowledge this, or if they do it’s always in hushed tones and never recorded in official documentation. It’s only when you actually comb through all of the records and referral materials that you find evaluations indicating that the client is autistic and/or intellectually disabled. Many clients conveniently have “inconclusive” IQ tests. Some have their IQs recorded in the murky range of borderline intellectual functioning. It’s smart evaluating and recording on the part of professionals. If their IQs are documented as 70 or below then OMH will usually refuse to pay for services and then refer the case to OPWDD. OPWDD will then refuse to pay for services because they’re mentally ill and refer the case back to OMH.

It’s frustrating for everyone involved, and it’s a gross disservice to the clients. We are ignoring who they are in an effort to secure funding and services. You can argue that some services are better than no services, and there is truth in that statement but it’s still no excuse.

April is Autism Awareness/Acceptance month. May is Mental Illness Awareness/Acceptance months. This year instead of ignoring each other why not collaborate? Why not advocate for services that are tailored for autistic people with mental illness? Why not draw attention to the discord between OMH and OPWDD and the way it harms our clients?  Why not celebrate and accept people for who they are, including all of their diagnoses? I mean, I get it. I’m asking for a lot. I’m asking for cooperation from two camps that can’t even foster cooperation within themselves, but this is all at the expense of the very people we are purporting to accept. Why not give it a try?

I’m Not Laughing

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Every morning I wake up to the same headline; some variation on how another young person committed suicide because of bullying. Every morning I read the same posts, watch as people gasp and murmur, “This never happened in our day” and “We’ve never had bullying problems before, kids used to be so good” and “Some kids just can’t take a little teasing, when did that become a crime?” and of course, “My child would never be a bully like that.”

What no one says is that bullying has long been a problem, we just never talked about it. When we did talk about it the blame was on the victim, and sadly that’s still the case. Maybe if the victim tried harder to fit in, maybe if the victim wasn’t such a tattle tale, maybe if the victim just avoided the bullies, maybe then this wouldn’t have happened. The onus is on the victim to stop the behavior, not the bullies.

I got off the bus from my first day of kindergarten with a large bruise on the side of my face. The boy sitting next to me in class punched me for some reason I can’t remember. My mom took one look at me and called the principal. My seat was changed, and that was the end of that.

Except it wasn’t.

In kindergarten a boy spit on me because I was “weird”. A fifth grader burped in my face while I was on the bus, much to the amusement of his friends. A sixth grader sprayed water in my face while I was on the bus because it was funny. A third grader taunted me every day while riding the bus, calling me names and swearing. Each time my mother called the school. Each time the student in question was spoken to, and each time I figured out that I had little recourse. Even if an individual student was discouraged from harassing me, that still left a student body of 1300 who had yet to get the memo.

Every year after followed a similar pattern. Name-calling on the bus, pushing on the playground, and exclusion from group activities. In first grade a student tried to pull my skirt down while we were on the playground. I yelled at him to stop, and he told the teacher. I was chastised for yelling; I should have asked nicely.

I should have asked nicely. That’s the message I received when I tried to defend myself.

I had horrendous teeth growing up, and even now I don’t possess a Hollywood smile. My teeth are large and prior to wearing braces they were so crooked I could eat corn on the cob through a picket fence. I became known as “Buck Tooth Beaver Girl” on the playground. Kids didn’t know my name, but they knew I looked funny. It was a laugh, let me tell you,.

By sixth grade I was completely socially isolated. I had no one to eat lunch with, and no one to play with at recess.  Kids who previously tolerated me no longer acknowledged my presence. Kids who previously tormented me upped the ante. The insult du jour was anything and everything pertaining to my (perceived) sexuality. You’re a dyke! They would whisper in my ears while we stood on line or sat together in class.

The usual question at this point is why didn’t I do something? Why didn’t I tell anyone? Surely teachers and administrators would have made it stop. I reported kids and sometimes they were reprimanded. Sometimes it made the bullying stop. Sometimes. What’s worse is that sometimes the teachers bullied me, so how I could I expect help?

I’ll preface this by saying most teachers are good people. Most teachers do not bully their students or take joy in their failures. Unfortunately, some do. The most egregious example for me was in sixth grade science. I attended a pull out Gifted and Talented Class, and sometimes I missed science lessons including experiments. I had to go to school early and make up the experiments with my science teacher’s supervision. He rarely came and instead another science took pity on me. She was always at school early, and she allowed me to use her classroom and supplies. I would complete my work and turn it into my teacher for grading.

Towards the end of the year my teacher confronted me about missing lab work. He accused me of not making up my work and refusing to come in early to meet with him. I stammered that I did come in early, that he wasn’t there, and that Mrs. So-and-so let me make up the work in her room. I always gave him the lab booklets afterward. The arguing escalated, and I honestly don’t remember what he said. I do know that I panicked and ran into the girls’ bathroom across the hall from his classroom. He stood at the doorway screaming, “You can’t hide in there forever! You have to come out!”.

My math teacher that year was a tiny, elderly woman with nerves of steel. She had been teaching since the 1960s and was unflappable. I heard her voice outside the bathroom, “You get away from that door. You have no business near the girls’ bathroom!” She came into the bathroom with a box of tissues and let me compose myself before escorting me to her classroom. After school I told my mother what happened, and she called the school immediately. I don’t think I’ve ever seen her that angry, before or since. The teacher was disciplined, and I never heard about the “missing” work again.

If you’re wondering, he still has his job. I was not the first student to file a complaint against him, nor was I the last. How can we expect to keep students from bullying each other when the people in power fail to set an example?

Middle school was worse. Now I had to contend not only with the kids from my elementary school but kids from three other elementary schools as well. I was still called a dyke and other variations on a regular basis. I had a teacher who took great joy in making me cry every. single. day. His goal was to desensitize me so I would stop crying by the end of the year while he made fun of me in front of the class. It was brutal. It was awful. It was going into the lion’s den day in, day out with no end in sight. I went to his class, sat in the back row, and cried while he tormented me because it was “for my own good.”

I didn’t tell my mother because by then I think even she was tired of hearing about it. My parents knew I had no friends. My parents knew I was teased and bullied, but they didn’t know what to do. The older I got, the worse it got. It didn’t matter who said what or did what, it continued. It’s a beautiful example of learned helplessness.

There was a particular group of boys who targeted me on a regular basis. Like me, they were in advanced classes and so I couldn’t avoid them. One of them, the cruelest one, sat behind me whispering insults, things I can’t bear to repeat. I would go to the bathroom and cry every day. At one point he paid another one of the boys to ask me on a date. They wanted to see what I would do, and it was going to be hysterical! When So-and-So asked me on the date, I stared at him with my mouth open. I didn’t like him, but I didn’t want to hurt his feelings. I told him I would think about it.

Another person in our class was kind enough to let me know that So-and-So never wanted a date; he wanted to humiliate me.

These boys also accused one of our teachers of being a lesbian, and that the teacher and I were “being lesbians together”. You have to love the terminology of thirteen year old boys. I was terrified. I didn’t want to get in trouble, and I didn’t want my teacher to get in trouble. I liked her a lot more than I liked my peers. I told the teacher even though the torment could be worse as a result. She was horrified, and we went to the assistant principal’s office. The boys were disciplined, and for a while the bullying abated.

High school was slightly better in that I had more freedom. There more students, more places to hide, and I packed my schedule so tightly that there was no time for lunch. These same boys attended high school with me, and they continued to harass me. One day they waited for me outside of class and asked, “If Mrs. So-and-So was a man would you suck her dick? Huh? Would you?”.

I went to the assistant principal and reported what happened. She said it was very serious and considered sexual harassment. HALLELUJAH, maybe now there would be an end. The boys would be asked to read packets about sexual harassment and sign statements swearing they would never do it again. That was it. That was all. I tried to explain that this was a pattern of behavior dating back to elementary school. Ah, it didn’t matter what they did in our previous schools. That was irrelevant.

That moment solidified what I already knew. No one with the power to help me was going to help me.

These are just the high-lights of how I was bullied in school. I won’t even get into the cyber-bullying, the fake screen names, and the fake Myspace page dedicated solely to making fun of me. There are other stories, more stories, and some that I still can’t talk about. Even as an adult I’ve been the subject of whispered conversations and laughed at in class. I’ve been left out of group activities. I’ve been isolated. The difference is that now I know I am not the problem.

People try to find wisdom and meaning in their suffering, but sometimes there isn’t any. I wasn’t tormented to learn a lesson. I was tormented because I was different. I am not a stronger person because of the bullying. I am a strong person in spite of it.

One of the things that made me angriest in school was when adults would tell me “It gets better”. It doesn’t. There are bullies at school, at college, in the work place, there are bullies everywhere you go. It will not get better unless you make it better.

This is still my problem. This is your problem, too. You can’t feign ignorance anymore. The body count is too high. The mental health effects are too prevalent. No twelve year old should be driven to throw herself from a building. No fourteen year old should be driven to shoot himself in the head. It’s enough. We’ve had enough.

If you see something, say something. Say it loudly. If you are silent while your children bully others or while your classmates bully others or while your coworkers bully others, you are complicit. For every child who dies there are countless others who are still struggling to live. There’s hope for them, if we can change.