Privileged Kids Fake Disability

By Tim Fromla

As a person who suffers from mental health issues, I am glad I live in California so that when I take a test, I can have extra time or even after I graduate, jobs are required to provide reasonable accommodations for my disability. In school, for example, there is extra time as well as breaks to allay my anxiety. When I do presentations, I can’t get dinged for stuttering or stammering.

Sadly, there are those who take advantage of the ADA (Americans with Disability Act) so that they can excel in school. According to the Hollywood Reporter, “Everybody’s Doing It”: Cheating Scandal Shows How Privileged Kids Fake Disability” is disturbing.

Going back to college, I had to request reasonable accommodation like longer test time or a day extra to turn my assignments in. Also, I had to seek approval to take breaks so that I do not become anxious, and not get dinged for stuttering or stammering while making a presentation. I had to get a note from my psychiatrist, submit it to the disability advocate, and waited for a letter so I can show my professors that I needed help. My anxiety and OCD were going haywire because I thought they would have denied me the accommodation, but I received it, and all is going well.

Today though, after the testing scandal from coast to coast, there are those who fake disabilities to get an upper-hand, thus creating a more massive stigma for those who need assistance. Many of us who do have mental health issues, tend not to want to share their plight with anyone but have resigned to the fact that we do need help.

More than 40 years I kept my illness to myself. I failed because I felt that I did not deserve the help. The failure resulted in me not doing so well in college in the past and going back today; I can make it up by going back to school. Yes, I do need help, and I promise to contribute to society, but at the same time, when those who don’t feel the humiliation as those who have various issues, it takes away the importance of accommodation so that I nor anyone else would rely on others for support.

I prefer not to get on disability and do well like any other student, but because I need the extra help, it can seem kind of embarrassing, but achieving the level playing field is all we ask. When wealthy folks who are lazy take advantage of the system, this can adversely affect our chance in succeeding in life. So what can we do? Go after those who take advantage of the system. I had to go through therapy for six months before seeing a psychiatrist. From there, the psychotherapist had to diagnose me, record my progress and keep a record of everything we did. I did not use my primary physician to write a note asking for an excuse; I had to open myself up to a stranger and explain why I am the way I am.

My therapy session can be prying, and my anxiety and OCD, as well as depression, made me struggle, but because of this, I can say without a doubt that I do need help so that I can be a contributing member to society. I don’t want help, but I realize that I need the support so that I can function in life. Taking advantage of the system though is a detriment to those who need the assistance. 

Stricter regulation must happen so that those who are wealthy enough to bypass the stringent requirements, don’t.   With stricter regulation, I suspect that folks like me will be under the microscope because of the acts of the few, thus creating more anxiety for us.

 

The Unitarian Effort in Helping to Reform Minnesota’s Mental Institutions 1946-1954

by Rev. Barbara F. Meyers

I have recently read a fabulous book that shows what committed religious people can do to reform mental health practices.  It is The Crusade for Forgotten Souls – Reforming Minnesota’s Mental Institutions 1946-1954, by Susan Bartlett Foote, university of Minnesota Press, 2018. 

It tells the fabulous story of how Unitarians in Minnesota helped to reform mental institutions in the mid-1900’s.  After pioneering work for documenting what was happening in Minnesota’s mental hospitals by members of his congregation who were horrified by snake-pit like conditions, the Rev. Arthur Foote minister of the Unity Unitarian Church in St. Paul, Minnesota was able to get the ear and the trust of the governor of Minnesota, Luther Youngdahl, and mental health reform became Youngdahl’s most important political policies.  

The reforms dealt with more funding, lower case loads, better training for workers in the hospitals, getting rid of restraints, better food and more social programs.  The reforms also involved people from the public visiting patients at the hospitals and bringing the true stories of what was happening into the public view – speaking truth to power.  Rev. Foote was very involved in all of the presentations to the governor and legislature to get these reforms identified and passed.

However, many of these reforms were later overturned by tightfisted conservative politicians and bureaucrats after Youngdahl left office.  But, as Susan Bartlett Foote points out, many important lessons emerged and live on:

  • it gave voice to the voiceless;
  • it helped define a modern mental health system to deliver care;
  • it showed what principled advocates could accomplish. 

Important considerations for success were:

  • effective political leadership is essential;
  • realize that the policy process is fickle;
  • trusted voices of citizen advocates are important;
  • the press can play an important and constructive role in shaping public discourse. 

The book’s most important conclusion is a quote from Luther Youngdahl: “The protection of the patient depends on our eternal vigilance.” 

This book should be required reading for all who are interested in mental health reform, and especially for Unitarian Universalists.

I have written to the author and hope to talk with her about the importance of this book to our future.   As a side note, Arthur Foote was the former father-in-law of Susan Bartlett Foote and she came by most of the information in the book from notes that she found in a closet of her house that he had left there.  She also did masterful research on the issue in many archives.  A first class book! 

I wish to thank Janet Holden for pointing me at this book.  I notice that there is a review of the book in the March 2019 issue of The UU World.

A Tragedy in the Family – My journey as a mental health advocate

by Steve Boczenowski

Early last year, my wife of 40 years, Deb, & I, who have lived our entire lives in the Commonwealth of Massachusetts, moved to New Hampshire.  After taking some time to set up our new home and get acclimated to the neighborhood, I started to venture out to make connections into my new state’s mental health community.  Last month, I found myself testifying to the state Senate Health and Human Services Committee in support of legislation which would increase access to mobile response and stabilization services.  Here is how I began my testimony: “My name is Steve Boczenowski and I’m a regular guy.  I love the Patriots and the Red Sox.  I love my wife and children and grandchildren.  I go to church most Sundays, exercise regularly, and love to work in my yard.  I’m just a regular guy.  But this regular guy’s life changed very dramatically on December 1st, 2009.  On that day, my 21-year-old son, Jeffrey, took his own life.”

This is just the latest step on my journey as a mental health advocate.  I was reminded recently of the first step that I took on that journey.  It was an evening in May, just six months after Jeffrey had died, when Deb & I and a group of friends organized a forum as a community response to the tragedy that had befallen us.  Jeffrey’s death was still very fresh to us that night and this is how Deb & I chose to describe our beloved son in that moment:

As a child, Jeffrey was full of life.  He had a mind of his own and a jolly laugh that just made you smile.  He could be intense, or he could be pensive, but he could also seize moments with a sense of joy and wonder.  He was always an independent thinker and exhibited true bravado, but he also always deferred to the wishes of his older sister.  Jeff was a sensitive soul, a bit quirky, but was a very charming young lad.

As Jeff grew older, he kept these same traits, but his sensitivity proved to make his life painful at times.  In the 3rd and 4th grades, despite being a good student he would ask repeatedly if he were going to pass or be kept back.  As a ten-year-old on his first real baseball team, his coaches thought he showed promise so they batted him lead-off in the first game; but after striking out four times, he was devastated and didn’t swing the bat again for many games thereafter.  He hated family disagreements, and worked hard to please his parents.

As he entered puberty, his moods turned darker.  He dressed in black and brown, grew his hair long, and his moodiness increased.  Always a shy boy, Jeff turned even more inward; he lost his love of sports and would frequently question the motives of his teachers.

Throughout all this, we, his parents, stayed involved in his life: Deb led a Camp Fire group and taught Sunday School classes; Steve coached him year after year in basketball and soccer.  We had dinner together most nights, helped Jeff with his homework, and always stayed in touch with Jeff and his friends.  We participated in many family activities including church, visits to grandparents, and family vacations.

Despite our best effort, Jeffrey took his own life late last year.  And we are left to ask ourselves why.

We mourn the loss of our son.  We have many unanswered questions.  But in the final analysis, the answers to those questions will not bring Jeff back to us.  And while we miss him terribly, it is our hope that Jeff’s death will not be in vain.  We hope to use his story to help to educate parents and their children so that they might pursue appropriate treatment if they experience mental illness.  That’s what tonight is all about.

The goal of that well-attended forum was to provide useful, practical guidance for parents.  We spent a lot of time figuring out how to best meet that goal and we decided that Deb & I would share anecdotes from our experiences with Jeffrey to identify obstacles that we encountered in getting Jeff the treatment he needed.  We also recruited two local treatment providers who discussed the obstacles we described and then proposed solutions that parents could employ.

Our group of organizers got together a few days after the forum to debrief and we were all quite enthused at what we were able to accomplish.  We decided to keep working together and we named ourselves Teenage Anxiety and Depression Solutions (TADS).  All of our group had some connection to mental health: some as parents, some as school guidance counselors, first responders, an emergency room mental health triage, and a clinician in private practice.

Meanwhile, Deb & I were doing the work of managing our grief.  We attended suicide loss support groups and did some reading.  We also reached out to the Massachusetts suicide prevention community, the Massachusetts Suicide Prevention Coalition (MCSP), which provided us with a good deal of education and support.  Through our participation with MCSP, we were able to make very good connections, which informed our work with TADS.  Nine years later, I realize that my work with TADS was an important part of working through the grief of losing my son.

But in those early days, we needed to figure out how to shape our work with TADS.  (We also took the necessary steps of becoming a 501(c)3 non-profit organization so that we could raise funds.)  We knew we wanted to leverage our story to help people, but I felt strongly that just telling my story was not enough.  Sharing a story raises awareness, which is helpful, but there is more to addressing the problem than just raising awareness.  From my perspective, parents are largely ignorant about mental health issues.  What does depression and anxiety look like?  What are symptoms that we can observe?  What’s important and what’s not?  So, beyond raising awareness, from the beginning I felt that it was important to help educate parents.  For several years, I would insist on sharing my story only when accompanied by a mental health professional.  (After listening to experts for a few years and attending several seminars on mental health, a widely-respected clinician assured me that I had developed sufficient background to provide the education piece myself.)

Also, from the beginning, Deb, an 8th grade math teacher, felt strongly that we needed to help middle schools and high schools educate their students about the perils of mental illness, including (but not limited to) suicide.  In those first few months of participation within MCSP, we encountered an organization called Screening for Mental Health which had developed an evidence-based suicide prevention curriculum for middle schools and high schools known as Signs of Suicide (SOS).  (Screening for Mental Health has recently been renamed to MindWise Innovations.)  Beginning in September, 2010, TADS annually hosted free one-day suicide prevention training for educators by hiring trainers from Screening from Mental Health.  More recently, Deb & I have received training to become certified trainers for the SOS curriculum and provide the training ourselves.  Over the past nine years, we have trained over 500 educators.

But awareness and education were still not enough.  The message that I would provide parents went something like this: Here’s what happened to our family; if you see these signs in your child go and get help!  But go and get help is a really difficult task for parents.  Because of the stigma associated with mental illness, it is not part of our public discourse.  I would tell people, if my son had a knee injury from soccer, I could go to the school bus stop and ask for recommendations for a good orthopedist; but when your son has depression, you don’t feel comfortable asking other parents for a recommendation for a good therapist.  Consequently, we struggle.  I remember accessing my insurance company’s list of therapists – names and contact info for local therapists, but with no other information or details.  As I stared at the computer screen, I wondered if I could trust any of these individuals, unknown-to-me, with the health of my child.  Recognizing this shortcoming, the newly formed TADS board started to discuss the best way to compile our own list of local therapists.  We were aware that compiling such a list would be difficult and it would soon fall out of date.  And we wondered if such a list would be sufficient – would it aid parents in finding a good match for their child, which is critically important in providing quality mental health care.

Then one afternoon, Deb & I were helping out at a local mental health fair and we encountered an organization that had already performed much of this difficult work and provided a telephone service to make quality mental health care referrals.  This service, INTERFACE, was provided by William James College, a graduate school for psychology majors and used graduate students to staff the telephones.  (INTERFACE is available only in Massachusetts.)  In a nutshell, the INTERFACE Referral Service provides personalized counseling referrals matched for location, specialty and insurance.  No fee is charged to the individual making the call, but the community licenses with William James College to provide this service for their residents.  Over the next few years, TADS raised funds to pay for this service for several area towns, and then convinced the local municipalities to pay the annual service fee with public funds.  We also advocated on behalf of INTERFACE to other cities and towns in Massachusetts.

Thus, our mission was complete: TADS addresses mental health issues, especially among young people, by raising awareness, providing education, and enabling access to care.

In subsequent blog posts I will describe some of the highlights of our work with TADS and where our journey has led us.