Chapter Four, My Developmental Disability Life, from Carpe Diem - Seize the Day, a Treatise on my Mental Health Experiences

Chapter Four

My Developmental Disability Life

Truly, Individuals that Are “Handicapable”

Most of my formative years (first 15 years) as a professional were spent working in the field of developmental disabilities – these people (men, woman, children) are considered intellectually disabled, deaf, blind, deaf/blind, and physically impaired, who also had severe emotional problems. I worked for State Institutions (WI, PA, and OH), Special Education in public schools (NC), private nonprofit organizations (MO) and private for profit hospitals (PA).  I served as program director, lead clinical psychologist, school psychologist and ran centers as the superintendent of the facility.  I was selected by the superintendents of a state to be their president of their organization and was the first executive director of the MO Association of Severely Handicapped. 

Residential institutions run by the State were mostly underfunded, controlled by unions, inadequately staffed on a seven day a week twenty four basis, and were used as warehouses to keep the handicapped out of sight of society.  In all these places, the executive director was either fired or forced to leave including me for doing was right for the indigent residing there.   

THE GOOD

During my tenure, I developed a unit management system of care and the construct of operating as a regional resource center.  Innovative self-help living and educational programs were implemented where learning was central focus across a twenty hour day and seven days per week basis.  Programs were instituted using “Try another way” – A Mark Gold approach, boy and girl scouts, time-out room for self-destructive behavior, Hewitt Engineered Classroom for dealing with emotional control problems, and curricula associated with Mary Meeker and Reuven Feuerstein dealing with Guilford’s Structures of Intellect and Instrumental Enrichment.   Behavior modification was employed for building the quality of life in those who were severely intellectually impaired.  The model espoused was that these handicapped people were truly “Handicapable” and all staff (medical, mental health, educational, and residential daily living staff) espoused this tenet and worked together as an interdisciplinary and transdisciplinary team to produce the best continuity of care and quality of care as possible.  Normalization principles were reinforced wherever possible constructing their living environment into a neighborhood concept to include the handicapped attending public schools in the area and having the community visit the facility and use the grounds for a variety of events (sporting events, carnivals, community action leagues, speaking engagements, etc.).  An envisioned future manifesto was developed which quickly grounded personnel in what was and why, moved to the future as to what could be and then developed a set of actions to make it happen.  Staff were enlightened and motivated to do their best.

The thought of using a facility for the developmentally disabled as a regional resource center for the geographic area it was located was considered quite novel for the day in the State where I instituted it.  The idea was to provide outreach services (medical and mental health) for those developmentally disabled living in the community who could not get services because of the area being rural in make-up and limited help being available.  When families needed respite support because of the undue stress placed on taking care their loved one or they needed someone to look after their loved one because they were going out for the night or on vacation, our facility provided the much needed backup services.  The whole idea was to keep the developmentally disabled living in the community to stay there rather than be placed in a state institution. 

THE BAD

Many institutions I worked at were an abomination.  Staff would tie up difficult to handle individual “patients” at nighttime so they could play cards – I caught staff doing this during one of my nighttime rounds of dorms, they were not expecting me to be there.   Staff would physically hit the patients – one staff actually broke the bones in the windpipe and the patient suffocated and died before anyone could help.  It was not unusual to meet the less than competent medical staff getting off the elevator on the wrong floor because they were so doped up from drugs themselves.  Nursing staff would give intramuscular shots (painful) to patients who disobeyed them.  Psychiatrists prescribed major psych drugs to most patients using for an excuse that the patients needed to be controlled.  All these incidences were reported and all got off due to the unions coming to their defense and somehow getting the evidence buried.

Many staff abused the system – they stole goods, supplies, food, and anything they could use in their personal homes.  Medical doctors signed off on work disability claims for staff who feigned their injuries – some staff were still on disability even in their seventies and eighties.  The food ordered was from a company controlled by the mafia – the nutritional value was very substandard.  The good news is that the patients would not starve but what they ate was never healthy. 

One place I worked at I attempted to set up a behavioral unit to deal with severe emotional control problems.  The Executive Director at the time denied my request.  One day while he was getting out of his car to come into the administration building I had a staff person purposely walk a difficult to control patient right in his path.  The patient physically acted out in front of him.  That same day I was called into his office and he said I could have my behavioral unit – how experiencing an out of control episode changed his mind!

The “Silver Bullet” story is a bizarre one.  I had an occupational therapist working for me who was bi-polar and when he was on his meds he did an excellent job.  When he went off his meds it was an entirely different story.  He did many weird things: (1) tried to get a major loan from the bank masquerading as me being the superintendent of the facility; (2) tried to get a professor position at a major university;  (3) blocking with a barricade a two lane highway holding a small caliber gun in his hand; and (4) called me on the phone and said he was going to kill a unit manager because the unit manager was on his way to rob his girlfriend’s parent’s home – he was going to use a silver bullet in his gun to kill him.  Fortunately, I was able to talk him down from his paranoia and delusions and get him the help he needed. 

THE UGLY

While I was the superintendent at a state institution, I came home one evening and my wife handed me an unmarked envelope that she received from a woman who worked at the developmental disability center.  She told my wife not to open it but to make sure I received it as soon as I came home.  When my wife handed the envelope to me I thought it was strange.  I opened it up and found a lot of hundred dollar bills with a letter from a local state senator asking me to do whatever I could to promote this gentleman identified in the letter to a higher paying position.  (This facility that I managed employed around one thousand employees and was the largest employer in the area.)  My first reaction was shock and found it difficult to believe who would even think I would accept such a bribe.  I immediately put the envelope with cash in it in a safe at work and called the inspector general’s office.

The next day two investigators showed up and they suggested we put a sting operation in place and invite the two people involved into my office to discuss the matter.  The invitation went out that we would meet at midnight in my office.  My phone was tapped as well as I was wired.  The investigators were hidden in a back room as the two showed up at midnight.  The conversation was recorded and the two made no doubt as to their intention.  The next day the two were arrested for trying to bribe a state official – a felony.  Here’s where it begins to have a twist.

In the state where this happened the charges had to be brought up to the local justice of peace to see if there was prima fascia case. The justice of peace happened to be the uncle of the woman involved and he determined there was no case.  The investigators were flabbergasted by the decision but decided not to give up and to take the case to another local area justice of peace.  This judge found that there was enough evidence to move it forward in the judicial system.  What I did not know when this attempted bribe was made that the woman involved as the intermediary in delivering the envelope to my home was the daughter of the mafia king! 

The state attorney general’s office assigned a newly hired “green” attorney to represent the state.  The defendants were represented by four seasoned trial lawyers hired by the mafia king.  The court case lasted ten days.  Initially, the judge tried to get the defendants to plead to a lesser charge – a misdemeanor but they would have nothing to do it.  The investigators testified – one could not remember anything but the other did.  I also testified and was on the stand for over six hours.  At the wrap up their lawyer told the jury “you know that Dr. Koehn is a smart man but he does not understand how we do business in this community.”  Little did I know but the local culture was that people paid administrators money to get their jobs.  The jury found them not guilty of any criminal offense.  (Postscript – had I known the community’s culture I probably would have in hindsight called them into my office the next day and had a photographer there to take a picture with me shaking their hands expressing my gratitude for their donation to the developmentally disabled – situation handled, done with, game over, got my message, no embarrassment to them.)

Within a month they attempted to get their jobs back but the civil courts found them guilty.  The lawyer representing the state came from a different office, listened specifically to what I thought needed to done, and said, and in what order.  I never had to testify – the case was a slam dunk.  Ironically, a year later the defendants requested that they get their money back from the state and because the state did not file some document in a timely matter, the defendants got their money back.

The story does not end here – many sad and insane things happened post-trial.  My wife, kids and I were threatened by phone calls and letters for our lives – fortunately nothing came of it but the stress was unbearable.  The investigator who testified, his young son (five years old) was killed in a hit and run accident six months later in front of their home during the winter season.  The pressure put on me in my job by the Department of Health became so overwhelming that I was forced to resign about a year later over some trivial reason.  The political structure in this state was linked to the mafia. 

As stated the year after the trial was extraordinarily mindboggling.  I hired after a very thorough and fair interview process my personnel director who had done an outstanding job to be the new business administrator to replace the acting business administrator who died of a heart attack.  The state secretary of health intervened and would not accept his appointment. The business administrator was responsible for all contracts to include food.  When we attempted to change vendors to improve the quality of food it was blocked by the state – the mafia controlled the food vendor. 

The new business administrator took his case to the civil service commission.  He asked if I would testify.  I said I would.  So I went down to the state capital to testify and was staying overnight in a hotel.  That night I got a call from the Secretary and was told that I was not to testify, nor was I to inform the complainant that I would not testify, and the next morning was instructed to go back to my office.  If I did not do what was asked, I would be immediately dismissed from my job.  I did what I was told but informed my current acting personnel director when I was leaving the state capital.  I told him that if the complainant called and wondered where I was to tell him the route I was taking and that I would be going only 15 miles per hour.  If he wanted the state police to pick me up he could do so – it never happened and he never forgave me for not showing up.   He never got his promotion.

This individual began to break down after this event.  Previously to his meltdown, a little information about him is important to understand.  He retired with an honorable discharge from the military and served in Vietnam.  He liked to party but was a controlled drinker.   He dressed impeccably and was excellent in his job. 

After his non-promotion, he showed up late for work or just did not show up at all.  One day he came into work completely disheveled, drunk and proceeded to embarrass himself in front of a lot of employees.  Somehow we managed to get him off campus and back to his home.  The next morning at six thirty AM I received a phone call from the State police asking me what I wanted to do with his remains. 

I could not believe what I was hearing – the shock was unbelievable.  Apparently, he got in an argument with his girlfriend, drove away from their house, purposely went down the wrong side of a four lane highway and drove head on into a sixteen wheeler that was stopped on the road.  Obviously he committed suicide under the influence and had a complete mental breakdown which has haunted me to this day to see if I should have done something different to keep this tragedy from happening. Little did I understand how all those ethic courses I took in graduate school would come back to challenge me as I dealt with all the ugliness in unethical behavior I experienced. 

ONE CAN MAKE LEMONADE OUT OF A LEMON!

Working for a private, religious-based, nonprofit center for the developmentally disabled was far better than working for state-run facilities.  This nonprofit besides having residential treatment component also had a separate school system for children and adults.  The residential architecture was state of the art for the times and set up with ranch homes and group home leaders – the stand alone residential units for the more handicapped were well designed, clean and more like living in an open condo system.  Prior to my leaving, this center was in the process of putting in place transitional group homes in the community for those who demonstrated the ability to live off campus.  They had an on campus vocational work center where silk screening, ceramic and art was taught as a craft – many of the products produced were sold to the public.  Families were constantly invited to participate in their “loved ones” lives and program.

The school which I ran had all the resources to support the students attending. The home living staff were well trained and the school had certified special education teachers for all levels of intellectual functioning, deaf, blind, deaf/blind as well as music therapists, occupational therapists, speech therapists, and physical therapists.  Home living and school were integrated and there was constant reinforcement and communication twenty four hours a day, seven days a week.  The school staff (thirty five in number) were mostly master educated female teachers with a passion and commitment to do their best for their students.  Additional vocational technical staff sublimated the teaching staff to help young adults and adults learn a trade.  One of my administrative assistants was a young adult female who had Downs Syndrome and was highly capable and very motivated to do well.  We were very successful at obtaining numerous grants from the state to set up innovative teaching, living environment, and vocational programs.

A unique feature of this center was its ability to leverage the resources of a major Big eight university regarding being a training ground for new and upcoming professionals in the field of developmental disabilities.  We had undergraduate and graduate students from many university departments (medical, mental health, and special education) gaining value added experiences at our center.  Potential budding psychiatrists, clinical and school psychologists, nurses, occupational and physical therapists, social workers, special education teachers spent their practicums and internships at the campus learning to apply their competencies in an atmosphere of being a part of a transdisciplinary team.  Transdisciplinary meant not only applying your craft but learning and applying elements of other professional crafts to produce the best quality of care and continuity of care as possible.  Extra time was spent with each trainee in helping them to adjust so they ultimately saw what we saw which was just how “handicapable” each of developmentally disabled were.  It was not unusual in the beginning for the trainees to want to quit or almost vomit because of what they initially felt.  Feelings were constantly addressed throughout their stay. 

This center of all the places I worked has left the most favorable memories for me – the center continues to exist and be a shining star in the field of developmental disabilities.  I left because of being too ambitious, probably wrong for doing so, and attempted to want to become the overall all administrator for both the residential living and school system – the corporate board did not desire this….thus their journey forward with me ended.  As a side note the medical department at the university during my early tenure at the center offered to put me through an accelerated program to become a psychiatrist – I was extremely tempted but did not accept, something I regret to this day.

SCHOOL DAYS, SCHOOL DAYS – LEMON TO LEMONADE BACK TO LEMON

As a school psychologist I provided: (1) special education support (emotionally handicapped, talent and gifted, intellectual disabled, and learning disabled) to a county and adjoining city school systems’ special education programs and regular classes; (2) diagnostic services and (3) counseling services in a  southern state on the eastern coast.  The city system was best known for operating education services for three different levels of intellectual disability (severe, moderate and mild).  Borderline intellectual disabilities were mainstreamed.  This type of comprehensive program that operated in the seventies and was unheard of back then – the irony is that this state’s funding for such programs has been so dramatically reduced that little if any semblance of what once existed, exist today.  The county system was very rural and one would travel fifty plus miles between the home office complex and the school asking for help.  

The regular class teacher who had special needs students had it extremely difficult.  Class size was typically between twenty five to thirty students on the average.  It was not unusual for these teachers to have five to eight special needs students per class without any teacher aide support.  The challenge was to devise support tactics, resources, techniques and procedures that they could use that were within their scope of ability to do given they had to attend to the individual needs of their regular school students who did not have special needs.   Such logistical and time management capabilities required creativity and innovation to pull it off.  More often than not the special needs students did not receive the attention they should because the regular classroom teacher felt overwhelmed with what to do.  Being empathetic to their challenges devising systems for them, and staying with them until they were able to execute, made all the difference between success and failure.

The special education teachers had it easier.  Resources and support were provided and individual attention to student needs was much more possible.  The biggest issue was misplacement, misdiagnosis and ineffective individual educational plans (IEP).  Back then mental health issues such as trauma, acute stress, anxiety, depression, ADHD, Bipolar, and conduct disorders were all treated as behavioral problems and collapsed under being emotionally handicapped – typically education and mental health were disjointed and disconnected from each other.   Autism was addressed as a peculiar social communication behavior and placed in an emotionally handicapped class.

Misplacement of students into moderate and mild intellectual disability classes was quite common.  Very often, I would see learning-disabled children who were assigned to these intellectual disability classes which blew my mind as to how they got there.  After much intervention, we were able to get them into learning disability classes with transitioning back into the regular classroom.  It was not uncommon for borderline intellectual disabled children to be misplaced into mild intellectual disability classes.  Back then the term “mentally retarded” was used. 

Typically one of the standard Intelligence Quotient (IQ) tests (Stanford Binet or Wechsler) as well as other specific diagnostic instruments to uncover specific deficiencies were administrated by a psychometrist.   Based on the scores and review by a team, the students were placed in a special education class.  What seemed obvious on the surface was not always the case.  One student I interviewed, had scored in the moderate range of intellectual disability but one look at him and you knew this diagnosis was wrong.  After talking to him for a while, he expressed that the individual testing him would not allow him to go to the bathroom so he did not perform well on the testing.  This situation was quickly rectified after spending two years in the wrong educational environment. 

I am not a big proponent of the IQ tests (supposedly measuring executive functioning) even though the current paradigm still relies on them to a great degree.  I was introduced to two different approaches to looking at intelligence – one dealt with seeing intelligence as an ability to transfer learning to new situations and the other seeing intelligence from a multitude of capabilities.  Both are more akin to my mental mindset of viewing intelligence.  I began exploring using the Learning Potential Assessment Device (LPAD) and Guilford’s Structures of Intellect (SOI) as well as their associated curriculums Instrumental Enrichment and Structures of Intellect Learning Activities.  Tremendous results and positive differences occurred when using these strategies developed by Reuven Feuerstein and Mary Meeker (both deceased).  One high school learning-disabled student who was getting “Ds” and “Fs” after six months of being tutored began getting “As” and “Bs” – quite remarkable!  Attempts were made to get the faculty to buy in to these approaches but with little success or sticking power. 

A quick side bar to show the kind of thinking that was part of the way teaching was approached at this time – during the beginning of the year school orientation, the superintendent of schools began his presentation by demonstrating how to use the paddle to punish students who misbehaved.  Neither I nor my fellow psychologist colleague could believe what we were hearing.  Such thinking seemed to come from the stone ages.

School principals often requested psychological services to help students with their crisis issues (family, interpersonal, bullying, etc.).  School counselors typically were the first to go to persons for students.  When things could not be handled effectively by school counselors we called in to help.  One high school student I saw revealed that she was sexually involved with a male counselor in her school.  Obviously this was immediately corrected – the sad part to this story is that it was not uncommon for teachers-counselors to get involved with emotionally deprived high school students.  More often than not these situations were either buried or ever revealed or uncovered.

CANTANKEROUS GERIATRICS

I spent some time as a medical psychologist providing support services based on referrals by medical staff.  During this time I also ran a wellness program for the hospital focusing on smoking cessation, stress reduction and nutrition.  These three programs were offered to the surrounding community and were based on programs developed by a highly credible nationally recognized firm who provided train the trainer classes.  These programs were very popular and well attended and made a difference to many people seeking help. 

Most of my referrals dealt with the geriatric population – some having dementia, others suffering from Alzheimer’s disease and many just disgruntled individuals who did not like the inadequate services they were receiving.   When comparing dementia and Alzheimer’s, while the behavioral manifestations are similar, medically the conditions are quite different.  Dementia is a product caused by mini-blood clots and Alzheimer’s is a product of ineffective synapses between brain pathways.   Mostly cognitive behavior therapy and executive function activities were used to soften the negative outcomes experienced by these medical conditions.  That said, the cantankerous “patient” was medically dealt with by giving unwanted medication to diminish their negative behavior.  What I did was listen to their concerns, address their needs and make their lives better – requested their medication be eliminated and for the most part this happened.  Medical doctors spent as little time with them as they could because the business model they were paid by was on how many “patients” they saw throughout the day – a lousy model to operate by in providing quality of care.  Some medical staff I knew even bragged about how much they made based on how many they saw.

So those labeled developmentally disabled are truly “handicapable” but the world treats them so different – what an injustice. As the world turns...