Where are our priorities?

In my previous post I described the cliche comments I used to get while out and about with some of the MR individuals with whom I worked for 8 years.  Comments such as "it takes a special person to do what you do" or "you truly have a gift" were commonplace during my career in that field. People used to say they could never do what I did. They used to say that "retarded people" just made them uncomfortable. In fact there are many people who would simply prefer to ignore the fact that they exist.

I wanted to take the opportunity in this post to discuss the effect that stigma against the MH/MR population has, not just on those who live with it, but on those who care for this population. Its a subject I'm passionate about because of the time I spent caring for those individuals and personally dealing with the stigma. I have a soft spot for care givers and recognize the impact that this type of stigma has on them, and that its largely ignored by anyone who hasn't had the experience. In order to do this, I decided to interview someone who works in the field currently. Now, I changed career fields 7 years ago, so while my experiences are still relevant, I felt it better to speak with someone who still experiences it today.  I sat down with Amanda, a recruiter for a local Human Services company which provides services for individuals of all ages with developmental disabilities.  This company employs over 900 employees in 7 different counties in PA. The individuals served are primarily diagnosed with MR, but the majority have a dual diagnosis with some aspect of MH disorder along with MR.

Amanda has worked for the company for over 15 years and has been involved in all facets of employment there. She began her career working directly with individuals in the group home, and transitioned to supervisor of a group home.  After about 10 years, she made a huge move, which took her from the group home environment, to working in the office full time, until about 3 years ago when she became part of the HR  recruiting team. Because of this wide array of experiences in the company, she has a truly unique view of the advantages and disadvantages of working in this field.

According to Amanda, she hires approximately 25 people per month, on average. However, approximately 30 employees leave on average per month. "So you can see why we are perpetually short-staffed," she says.
One of the biggest reasons that employees leave, is that they find higher paying jobs.  The average starting pay is $9.00/hr, so it's fairly easy to understand that employees would jump at the chance to leave if confronted with a higher paying alternative. The next biggest reason employees leave is that they get fired. There are a number of reasons for this, but in the human services field, the biggest reasons include, abuse or neglect. Bear in mind, company policy defines abuse and neglect as a wide range of defined actions. Things as benign as leaving your shift early are considered neglect, according to company policy.  Other reasons include progressive discipline issues, such as attendance.

To give some idea of what is involved in providing care for an individual with developmental disabilities, Amanda described a list of job responsibilities that she commonly includes during the interview process to potential new recruits. Direct Care functions include providing personal care, such as hygiene, preparing meals, going on community outings and engaging in various types of activities, transportation in company vehicles, state and county mandated documentation, and general housekeeping.

From her experience in the field, Amanda shared some of the biggest challenges that employees have when working with these individuals.
"They are expected to administer medications, deal with unmotivated coworkers who don't pull their own weight, dealing with the behavioral issues - sometimes severe - that the individuals possess" and, she says, dealing with the physical demands of the job, like lifting, pulling, and bending."
There is also a general lack of understanding from management that seems to really discourage the employees.

But its important to note the rewards that employees receive for providing such needed care for these individuals. Watching the residents achieve goals or accomplish tasks that they've been working hard toward is a huge reward, according to Amanda.  Also, the sense of self-fulfillment, making a real difference in someone's life, love for people with special needs, and the opportunity for advancement within the company.

While employees have plenty of challenges to face within the company, while working with individuals directly, what most people outside the industry don't understand are the challenges of being a part of the care giving field in general. Amanda describes some of the biggest challenges that companies like hers face, which include budget issues.  " There seems to be a serious lack of understanding from the state level, that funding needs to be based on cost of living. Our funding doesn't increase according to cost of living increases, but the company is still expected to make adjustments for it's employees for this reason" Amanda explains.
This just creates increased staffing issues, such as higher turn over rates, because the company can't pay it's employees as much as it would like.

There are also unrealistic expectations from the state and county over the type, and level, of regulations required in order to receive the same amount of funding every year.  "It seems there is always more and more we are required to provide - documentation wise - to the state and county, but we never receive more funding as a result. It's always the same or less."

I asked Amanda what she wishes that people would understand the most, about working with the MH/MR population. According to her, over the years "the level of stigma has decreased, but people still don't understand that individuals with MH/MR diagnoses don't really need to be 'controlled' just because they're different.  I've been on outings with individuals who have severe behavioral issues, and people still ask 'why are you letting them act that way out in public?'  There still could be more tolerance of people with disabilities, both within and outside the field."

"Most importantly," says Amanda, "in order for stigma to go away, society just needs more role models to teach acceptance and understanding. Children need to be taught by their parents, teachers and other authority figures, that just because someone is different, it doesn't mean we should love them any less."




A.J. Knight (personal communication, February 23, 2013)

Stigma Kills

I wrote about mental retardation in my last two posts because there is a definite stigma against the MR population. But this sort of stigma reminds me of a soft, very loving yet uncomfortable stigma. Where people stare, but it's a sweet "awwww" kind of stare. When I worked in the MR field, I used to hear the cliche comments that everyone seemed to make when they saw me with one of the individuals I served. "It takes a special person to do what you do". It always bothered me, because I didn't think I was particularly "special". I was just doing my job.

The stigma of mental illness on the other hand, is hard, unforgiving, and potentially deadly. Its the type of stigma that makes women hide their children. It's the kind of stigma that makes doctors push mentally ill patients out of their office with a prescription for Prozac and a "you'll be fine".  While the gentle stigma of mental retardation doesn't seem to cause much harm, the cold, neglectful stigma of mental illness can be deadly.

Sunday's cover story in the Reading Eagle, entitled "Nowhere to turn" by Jason Brudereck describes the story of Katrina Pugh, a 21 year old graphic designer (among other things) who committed suicide early in January after battling mental illness her entire life. She killed herself with her boyfriend's rifle, which prompted a particular amount of attention given the nation's outcry over gun control.  But this is not a story about guns.

Katrina's story is not unlike thousands of other people in this country living with mental illness. According to the article, Katrina began getting treatment by a psychiatrist as a child and was diagnosed as bipolar, with anger, anxiety and defiance issues.  As a teenager, Katrina was brutally raped by a classmate.  Her mother tried over and over again to help her daughter, which at one point during her teen years, involved her living in a family care giving setting as part of a long-term therapy program.  But like thousands of other teens who hit the age of 18, the mental health system abruptly ended support for her, and now considered an adult according to the law, Katrina could not be forced to obtain help for her mental illness.  Her mother, Kristine desperately searched for other options; but to no avail.

Kristine attempted to involve the police several times, in order to have her daughter involuntarily committed, but the police never offered any support; instead telling Kristine that there was nothing they could do because Katrina was an adult.

After being forced to testify in a court case against her friend, which brought Katrina an immense amount of anxiety because of her previous experience as a young teen, testifying against her rapist, Katrina began to unravel more than ever before. Based on an opinion by Dr. Edward Michalik Jr.., the administrator of Berks County's Mental Health/Development Disabilities Program, who said, "that as long as a witness is not judged to be incompetent, there's no reason to keep her from testifying" (Brudereck), Katrina was not kept from the stand in the court case.

Katrina ultimately chose to kill herself months after the court case, because she simply could not fully recover from the courtroom experience.  She snuck into her boyfriend's house, retrieved his rifle from the closet, and locked herself in the bathroom where she shot herself in the head.

The saddest part of this story is not the fact that Katrina's boyfriend kept a loaded rifle in his house, it's not the fact that Katrina unravelled as a result of a severely stressful court testimony, and it's not the fact that Katrina was raped as a teenager. The saddest part of this story is that there wasn't adequate support for Katrina throughout her life. It's the fact that her mother's insurance company wouldn't pay for consistent mental health care. It's the fact that the law considered Katrina an adult at 18, and therefore didn't feel that Katrina needed help for her illness anymore. The police wouldn't intervene. The court system wouldn't intervene after her rape. The mental health system shuffled Katrina through their doors with a handshake and a smile, and told her that everything would be fine.

There needs to be real change in this country when it comes to mental illness and the treatment of it. Our society sees guns as the reason for violence and death, and places blame on the deranged mad men that use guns to commit awful attrocities, but why doesn't society turn their pointing fingers on doctors/psychiatrists who push those in need through the system? Why doesn't society blame the police for turning a deaf ear to a desperate mother, trying to keep her tortured daughter from harming herself?  Why doesn't society take a stand against insurance companies for treating mental illness as a non life threatening problem among their policy holders?  Mental illness isn't treated as a SERIOUS issue, and as we have seen in newspapers, and on TV, mental illness is astoundingly life-threatening.

The answer to these questions is simple. Mental illness is stigmatized.  Mental illness makes people uncomfortable. It scares people because they can't see it. It costs money to treat it. People are afraid of it.  The bottom line is that Mental illness carries with it a stigma, and as in the case of Katrina, a life that could have been spared, that stigma kills.



Brudereck,J. (2013, February 17). Nowhere to turn. Reading Eagle, pp. A1, A4.

The More You Know, The More Visible They Are...

Organizations like The American Association for Mental Retardation and the Association for Retarded Citizens exist to educate the American public on the many aspects of mental retardation (MR), including prevalence, resources for families and educators, and research statistics. Unfortunately, these resources are usually only utilized by people who have recently become touched by mental retardation in a personal way. Whether it's because they have a child diagnosed with MR, or perhaps because of interaction with an individual with MR through a social or professional circumstance.   The socially invisible population usually remains invisible to anyone else who has no need to learn more about MR.

Through research for this blog, I've come across some interesting statistics about MR which really puts the diagnosis and those living with it in perspective. Most people don't understand just how lucky they are that they weren't born with MR, or that their children weren't born with, or developed MR. According to the American Association on Mental Retardation, there are generally four different risk factors that cause MR: 

1. Biomedical factors
    -things such as birth defects, or genetic disorders, and even malnutrition

2. Social factors
    -things such as child stimulation and adult responsiveness

3. Behavioral factors
   -harmful behaviors like drug and alcohol abuse (i.e. fetal alcohol syndrome)

4. Educational factors
   -things like the availability of educational materials and support for pregnant women, to teach them the                proper way to care for themselves while pregnant

It's rare that we journey out into the public and see a person with MR, which is why we always notice those individuals right away. There is just something "different" about them, even if their disability isn't blaringly obvious. But, just how many people are there in this country, living with MR?

In 1982 (that's 31 years ago for all you mathematically-challenged out there), the Association for Retarded Citizens estimated that roughly two and a half to three percent of the general population live with MR. This equals approximately nine million individuals (give or take a million, based on population growth).  Given the increased research and awareness of autism over the last ten years alone, it's possible that the number could be well over ten million.   More people live with MR than those who live with cerebral palsy, and birth defects such as spina bifida. MR shows no discrimination when it comes to race, ethnicity, educational, or socio-economic backgrounds. In fact, almost one out of every ten families in the United States is directly affected by MR.

So you see, MR is common. Our neighbors, our coworkers, and our friends all might be related to, or at least know someone who lives with MR.  The fact that we might not interact with an individual with MR on a regular basis doesn't mean there isn't a whole subset of our population who lives with it. Gaining awareness of the causes of MR is also an important step in understanding it's prevalence. It certainly makes me think more about how miraculous the process of birth is and how we walk a fine line between "normal" development and MR.  We often don't give a second thought to most of our actions, or choices. However, when you start to think about the damaging effects of drug and alcohol abuse, or the fact the impoverished in our world suffer from malnutrition and non-existent prenatal care and education, it's easy to realize that every single one of us has the chance of being directly affected by MR.

Contributing Sources:  http://www.heionline.org/docs/training/introduction_to_mental_retardation.pdf

                                   http://www.aaidd.org/content_100.cfm?navID=21
                                  http://www.thearc.org/view.image?Id=2078

Introducing....Mental Retardation

        What do you think of when someone mentions the phrase "mentally retarded"? Personally, I think of several things: my aunt, all the individuals I worked with for 8 years, even Corky from the late 80's TV show, Life Goes On.  But you know what else I think of?  The stares, the gasps, the quick shuffles to get out of the way. I think of mental institutions that hid the mentally retarded away from the rest of the population. I think of the historical perception of individuals with mental retardation as possessed by demons, or punished by God. There are plenty of positive memories that come to mind, but plenty of negative images that appear as well. So, what do you think of?
        You might be one of the millions of people in our society who prefers not to think about the fact that there is an entire population of individuals in our society - indeed, throughout the world - who were born and now live with mental retardation. It's ok, I don't blame you if you are. It's common to go through life without really paying attention to world of the mentally retarded population. You might see someone with Downs Syndrome, as they pass you on the sidewalk and feel mildly uncomfortable because of their buggy eyes, or their over sized tongue, or their squinty eyes.  But you quickly pass by and after trying to make sense of WHY they look so different, chances are you just forget about them. Besides, it might be easier to forget about them and get back into your comfort zone again.
       This blog is dedicated to talking about that subset of our society who are widely considered "invisible" by everyone else.  There is a lot of information out there that discusses the stigma that society has against persons with mental retardation and I intend to share it with you throughout this blog.  Below is a video featuring Chris Burke (a.k.a. "Corky") who discusses Downs Syndrome and what people who live with it are like. It's a short clip, but I'm sharing it with you in order  to introduce you to one of the aspects of mental retardation; just in case you need an introduction.