Health care for people with mental retardation and developmental disabilities (MRDD) in Indiana

About eight years ago, my husband took a job in a small city close to Indianapolis, about four hours' driving time from where we were living. The managerial position he was taking came with plenty of promising talk about eventual ownership of the midsized company. His new salary was more than double his prior income. In short, this seemed a wonderful opportunity. In many ways, I looked forward to the change.

So in June, 2000, we made the move. I spent the summer lazily, getting to know the community, finding my way around and spending time with our kids. By August, as the kids started their new school, I looked for a job. Having worked with adults with chronic, serious mental illness, and also having an interest in psychology, I hoped maybe I'd find a job in that field. An ad in the local newspaper sounded interesting, about providing direct care services for people with mental disabilities. This wasn't exactly what I wanted, but the general idea of working with people was still appealing, so I applied.

The interview was conducted on site, a group home with eight adults. Entering the residence, I took note of the friendly atmosphere. Comfortable-looking furniture in the living room, nicely waxed floors and a cozy dining room, and dozens of photographs on the walls all contributed to a sense that this truly was a home, not some impersonal institution. Before entering the small office with the manager, three people approached me and introduced themselves. One middle aged woman gave me a hug. The manager asked her, "How do we greet people?" The woman laughed and said, "Nice to meet you". Later I would learn that great emphasis is placed on helping people with mental retardation and developmental disabilities to function in mainstream society, right down to 'proper' greetings, which do not generally include hugging total strangers.


The job sounded perfect: I would be helping the residents learn activities of daily living (ADL's), assisting with the maintainance their home, and assuring personal safety. The pay was low (I am still amazed at how our society undervalues the importance of caregiving), but I wasn't worried; my husband was earning a great salary and my income would be more of a supplemental cushion.

The company provided a week of orientation and training. I took classes in passing medications, documentation and crisis intervention. How upbeat those trainers were! What a caring, noble endeavor to provide quality of life for this population! We trainees were praised for taking on such challenging, but rewarding work. We spent a good two hours learning the clients' rights. They could be involved in determining their course of treatment, or refuse said treatment. They could seek legal counsel, change doctors...on and on, pretty much the people in our care could do what us so-called 'normal' people just take for granted, with one exception: Many of the residents had the legal status of emancipated adult. The rights apply to them. Other residents, a minority really, had legal guardians. In that case, the guardian makes the decisions for the resident.


Management promised their support and understanding, assuring us that as the 'front line team', we would serve as the eyes and ears for them...we were to come to them with any concerns or ideas that would enhance our residents' lives, because that's what we're all here for...right???


Call me naive, ignorant, or just plain dumb; but I completely ate this up. Maybe it's tied into a deeper personal need to define myself as a helpful, caring person...those being a couple of the qualities I admire most in others. At any rate, this pro-company 'we-love-our-clients' propaganda was incredibly effective on me. I was filled with enthusiasm, completely energized, and fully ready to jump in there and advocate for these folks. I remember having the slightest, fleeting thought of something being inherently wrong when one trainer stressed that the company was a privately owned, very much for-profit business. What a strange point to make, in the midst of all this pro-resident talk. It struck me, just briefly, as rather odd that companies could or should profit this way (see my point about being naive?)...and of course much later I would come back to this thought and see clearly that all of human health services as it currently exists in our country is very much profit driven. At the time though, I simply hadn't been faced with the multi-faceted and very troubling reality of what this fact entails.

My first day on the job didn't involve work at all, but included a staff meeting. Meeting my co-workers and learning a little about the people I'd be helping was very exciting. Imagine a grade-school child who is bubbling over with enthusiasm to the point that she is wriggling and fidgeting in her seat...that's pretty much a good picture of me right then. The house manager who'd interviewed me addressed a current concern: One client was having behavioral issues, being verbally aggressive toward his housemates and the staff. His QMRP (qualified mental retardation professional) had amended his behavior plan to address problem. The plan included the admonition that staff was at all times to remain very calm and unemotional when working with him. This advice I would learn in years to come is always the best approach, and also often one of the most difficult to follow. Staff after all are human, and when someone is out of control, screaming and cursing, even threatening violence...well try to picture yourself in such a situation and consider how you would respond. Another aspect of the client's plan was positive reinforcement. I don't recall specifically when he would earn his reinforcement, only that it was $1.00. A staff sitting across from me spoke up when this was reviewed. By her tone it was clear she in fact was very frustrated with this person and at her wit's end on what to do with or for him. She asked, "Is it okay to tell him he's not going to get his dollar if he keeps it up?" Without thinking first I chimed in, "We'd want to be very careful about how we said something like that, because it could have a very punitive quality to it which defeats the purpose of positive reinforcement." Who doesn't love a wet-behind-the-ears newbie know-it-all??? This staff, I'll call her Andrea, didn't change her expression and didn't look at me overly long. She just turned to the manager waiting for a response. The response was something like, "Oh right, as long as you keep calm and don't make it sound like a threat, it's appropriate to remind him of the reinforcer." She then suggested a little role playing for us to practice our approach with him.

At this point, Andrea jumped up. She firmly announced that role playing was a GREAT idea, and that she was going to play the role of the resident. She jabbed her pointer finger in my direction and declared, "SHE'S going be my 'staff''!" Right about then, the reality of what I'd done by jumping in with my two cents to a bunch of seasoned staff about two minutes after they'd ever met me hit me like a ton of bricks; immediately followed by the acknowledgement that now, I would pay. Inwardly, I groaned, well, I brought this one right on me. It struck me as inherently funny. I would eat my crow, and make amends later through hard work and respect.

I will not say exactly what the role playing entailed, because of that resident's right to confidentiality. There is a slim chance that details could be identifying enough for anyone who knew the resident to guess his identity. Suffice it to say, Andrea played the part to a tee, with a glimmer of rather wicked delight in her eye as she watched me squirm. As for me, I tried best as I could to take it seriously, flubbed up numerous times, and kept having short bursts of giggles...sort of a moderately uncomfortable yet strangely fun experience that lasted no more than four or five minutes.

I'll end this post on that note. This subject is near and dear to me, with stories that have touched my heart, and broken it many times over. Over the next several days, I'll try to share some of these here, as well as address the very real pervasive problems this field struggles with, considering the health system as it's currently structured.