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)