Healthcare, MRDD population, continued

While it is obviously true that I haven't posted in just over a week, I have in fact been writing here, starting a few paragraphs with no sense of where I'm going, only to save and come back to it, deleting some or all of it and beginning again. The issue is, this subject is so near and dear to my heart, and covers eight years of my life. Were I to write chronologically, simply telling the story of the work involved, the people I came to know (residents, staff and management), what's working/not working with the system...well, this would be very tedious, both to any reader and even to myself.



So tonight, I'm determined to actually post something, almost anything, to move forward at least a bit.

I want to begin by looking back just a bit: In my last post I introduced Andrea, hopefully I conveyed the humor with which she handled my overzealous enthusiasm as a 'newbie'. Andrea became my mentor, a woman whose standards I try to live up to as best I can. Just by being herself, I learned to value people more deeply for themselves, to try and appreciate their perspective at a level I hadn't ever considered before. She is a natural-born teacher, able to relate her experiences, work ethic, and common sense to everyone without ever sounding over-confident, condescending or 'preachy'. To say that she and I became friends would be an understatement: We are sisters in spirit, something plenty of people cannot claim in regards to the siblings they were raised with.

As I said above, this post has been started and stopped several times. Already tonight I've written quite a lot, only to go back and delete most of it. Instead of jumping in about life in the group home, I'd like to ask anyone reading this to use her imagination for a moment....

Consider who you are, what your day typically consists of, what you like to eat (and when, and how much), and who you enjoy spending your time with...do you need lots of people around, or does the thought of no 'me-time' drive you up the wall? Do you occasionally call off work or miss a day of class just for the hell of it? Or do people 'like that' seem lazy? What kind of health concerns do you have? Medications? Think about your sexuality: do you enjoy sex (with or without a partner)?

Now, imagine that some nameless, faceless Powers-That-Be have decided that you are going to live with seven people, whom you've never met, maybe for the rest of your life. You'll be sharing a bedroom with someone of the same gender. You'll be able to bring a few belongings, space allowing. Maybe you enjoy music, and often play the radio all night while you sleep...well, your roommate simply cannot sleep unless it's absolutely quiet, so a staff you've just met smiles and 'asks', "How about you listen just for an hour, say between 9 and 10pm, OKAY?" Clearly, you will be expected to comply.

The Powers-That-Be have plans for you. Monday through Friday, you will be awakened between 5 and 6am. You'll be expected to shower (quickly! there are 3 other women in the house who also need bathing), dress in clothes deemed appropriate for work and weather, eat breakfast (note that if you're underweight and don't like breakfast, you'll be exected to eat it anyway, and maybe drink a breakfast beverage on top of it for extra calories; if you're overweight, you'll be firmly prompted to eat less). Check the chore list: you might have dishes to do! You'll take any meds you're on, and very possibly be asked day in/day out to recite each by name, dose, purpose and side effects (for your own good). All eight of you will have a sack lunch prepared the night before, load onto a van, and head to work. Depending on the day, there may or may not be any actual work for you...it just depends on things that no one bothers to explain. Much of the time you'll find yourself sitting, waiting for 2:30pm, when you and your new housemates will load on the van to go home.

Your evenings will be just as structured, right down to planned 'leisure time'. Mind you, if your preferred activities are not considered age appropriate, you will be frowned upon and grudgingly given maybe half an hour in your room for this pastime. Dinner will be family-style (sit in your assigned chair). Bedtime is 9pm. Did you used to sleep just in your undies? Now you have a roommate, so that is no longer appropriate. Your dirty clothes must be put in a basket in your closet, and you'll wear pajamas.

Weekends, a chance to relax! Right??? Well, someone may've said you can sleep in. After all, who doesn't enjoy a couple extra hours of sleep after the drudgery of working all week? Sounds good, but if you have medications, they MUST be administered between 7am and 9am, no exceptions. Oh, many medications just can't be taken on an empty stomach, so you'll have to eat breakfast (served at 6:30am). Since you're up, it's time to clean your room, do laundry and any assigned housekeeping chores. The Powers-That-Be want you to participate in your community, so staff will take you and your housemates for an outing (hope you like Wal Mart and McDonald's).

By now, something in all this will surely have rubbed you the wrong way, which seems very reasonable...even inevitable. So, hey, your first night in your new home, the house manager (who by the way really isn't YOUR boss, just the staff's boss, yet somehow it feels like you have to listen to her) explained that you have all these amazing rights...basically it sounded like you could pretty much say to hell with any part of this. So let's play that out.

You complied the first week, more from being numb with shock at the newness of it all, but come Sunday night, you're feeling pissed off. That so-called work you did was boring, you didn't like your supervisor, and the person across from you yells a lot and gives you a headache. So you make up your mind, come Monday morning you are NOT getting up. You fall asleep, pleased with your resolution.

At 6a.m., a staff whose name you still haven't learned tells you, "Time to get up!" You grumble and roll over. 10 minutes later, he says it again, adding, "You're going to be late for breakfast!" You figure if you lay really still he'll get the message. And in a way, you're right. But understand, no plan is in place for this 'noncompliant behavior'. You're making waves, becoming a 'challenge' to be managed. Prepare yourself. Prompts will continue. The staff may or may not try to keep a calm tone, but either way he'll keep at you. He may try to find out what 'the problem' is...so go ahead and tell him, you hate work! Well, he'll start selling you on the positives: "Hey, all your 'friends' are there, your supervisor said she really likes you, you get to earn some money, you WANT to be 'independent' don't you??? Independent people go to work!" Maybe you have real perserverence, and you stay in bed. The manager will be called, special arrangements will be made. You may find yourself seeing the doctor to rule out medical problems, or a psychiatrist who decides it's DEPRESSION, and presribes a new medication. Keep on resisting the program, and a behavior specialist will get involved. She'll identify the target behavior: Noncompliance. Maybe by now you'll have another target behavior, Verbal Aggression, because you're so damned irritated that you're cursing and threatening all these control freaks with their damned rules.

Thinking of this structured existence, I realize it's much like the square peg in the round hole for some people. Maybe in a group home like this, 6 or 7 people just take the routine in stride most days of the week. They'll get angry from time to time, but let it go as quickly as it flared up. But imagine the incredible patience each person must have? Say one man does enjoy his life, looks forward to many features of the day or week...but how does he feel when a housemate yells, threatens or even hits?

If that seems too extreme (sadly, it really isn't), just think of all the personality differences, not just among the residents, but also the staff (which keeps changing all the time).

That's all I have to share tonight...it's really late, 3:30a.m, 6/22/09. I'll try not to take so long to pick up next time.

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.

Okay, so why not confront him?

When I wrote my first blog a couple nights ago, I didn't think much beyond that story and had just a handful of general topics in mind for subsequent posts. The story of Thomas, to me, stood alone. The feedback I received, however, begs a response. Basically, those who know me and Thomas responded with two supportive suggestions: One is, "Don't let him get to you." The other is, "You need to give it right back to him when he's being like that". Both are well intended based on consideration of my feelings. The first, not letting myself be upset, just isn't going to happen. Understand, I am not devastated and do not dwell every minute of every day on anything that is said to me; I simply may need to think about it a while, vent to a few close, understanding people, and then that is it. That leaves me with the other suggestion, to 'speak up' for myself.

These responses were interesting, but in a way also disappointing. After all, the point of that story was not to complain about Thomas, but rather to share what he means to me and how I value him. I hoped that anyone reading might take heart and think of similar relationships in their own lives and recall what those people mean to them. A new 'online' friend in another site actually did take the story that way...she wrote me a bit about her childhood and how she is coping with a family member.

I mentioned that someday maybe I would blog about why exactly it is that I do keep quiet when people say something I either disagree with or am upset about. Because of this feedback, now seems like the right time to discuss it.

There are a variety of interactions with people where I might want to speak up or disagree, so many in fact that this writing could easily go on, and on, and on. A cashier might be rude, a brother might be way off base, or a friend might simply have an opinion that's different from my own. I'll try to stay on topic here, from a general perspective and not get bogged down with too many individual situations.

The first reason for not speaking up has to do with my spirituality, or 'higher self'. I am a Unitarian Universalist (if curious, go to uua.org), an organized religion that has a set of principles, rather than doctrine, which I try to follow. These principles reflect the values I developed long before I ever heard of UU; mainly acknowledging and honoring the worth of every individual, and acceptance of one another. UUer's come in all shapes and sizes, with a wide variety of beliefs. A typical congregation may include atheists, agnostics, Buddhists, Wiccans, Christians, etc. What we all have in common are our shared principles. In order to practice these values, I do try to honor each person by listening and encouraging him or her. If something is said that I disagree with, I think, "well, it isn't about me...this brother/sister/mother/friend/acquaintance has a voice, has her own life story rich with experiences of joy and sorrow.

Add to this something I believe the Dalai Lama once said (forgive me if I'm mistaken, but I do believe it was him), that we should enter a room with the perspective that we are the lowest person there (paraphrased, hopefully not too butchered). To me, this means that in every possible situation and with every person I meet, I am the student and have something to learn from that person. If I become too involved in my own opinions or react to her words with indignance, anger or insecurity, well then how can I hope to learn and grow?

That is my highest aspiration, reflecting my spirituality. But of course, as an average person I do bring my ego with me when I interact with people. Accordingly, I do react internally. I frequently feel intolerant or impatient. I get offended or hurt. I may feel superior and think the person's a fool for thinking the way he does. Those are knee-jerk responses all mucked up with my own life experience and perspective. Why not speak up??? Well, I ask myself, what's my motive, and will speaking up satisfy that reason? If it is satisfying, will there be future repercussions, such as a damaged relationship, or within myself any guilt of conscience?

Any number of motives may apply: I may desperately want to change that person's mind, or if he has hurt my feelings, I may want him to know--and apologize! Maybe I simply feel strongly enough about something and want to be heard (and valued). Or it could be that if I feel slighted, damn it I want to lash back and make the offender feel like crap.

With those motives, why do I remain silent in almost every situation? Maybe here I do need to use a few specific examples. Let's pick on Thomas again. Just as I know he has opinions of me, I naturally have opinions about him. I believe Thomas is in a sense fragile: His self-identity is wrapped up in being wise, knowledgeable, thoughtful, above such base emotions as anger. Maybe more to the point, he deeply needs to be perceived this way. I can't recall him ever saying, "That hurt my feelings". Only insecure people get hurt feelings, and he is too mature for that. Thomas is very well read. He has over the years studied psychology and philosophy. He saw a therapist for about three years and has worked through many struggles. In short, he actually does have a lot of wisdom, interesting perspectives, and a great memory that allows him to support many of his views with facts.

So, if I want to change Thomas's mind, what are my chances? Slim to none! Well then, if that is the motive, I might as well say nothing. If he's hurt my feelings, what happens when I say something? In this case, I have over the years called on him to explain the hurtful statement. Every time, and I do mean 'every', I guarantee he has assured me that I have misinterpreted and taken whatever was said in the most negative possible way. He usually then explains that I've done this because of our childhood, that I am programmed to respond like this, and that he used to be 'where I am' but with introspection and therapy he has worked through and overcome this response. If he does apologize, it will be qualified: "I'm sorry your feelings got hurt because you didn't understand what I was saying." This being so, the motive is not satisfied, so again, I choose in most situations to say nothing. If my motive is to simply be heard (and valued), well it's clear to me that Thomas has an even stronger need to be heard. When this is the case, I know of course that I won't be heard even if I do speak up. So, I don't.

This leaves me with retaliation. When I've lashed out at people, I almost always regret it. It's hurtful, shallow, and definitely does not reflect those values I mentioned. I feel ashamed and guilty; it may be momentarily satisfying (Ha! Gotcha!), but what am I left with? Better to vent elsewhere as needed than to subject myself to the anguish I'll suffer indefinitely. Speaking from anger damages people, even very confident people. It damages the relationship. It is rarely (I deliberately am not saying 'never') worth it.

As one thought leads to another, I'm tempted to go down tangents...what about in the workplace involving co-workers or bosses? People I meet around town? If the above is all about why I don't speak up, what circumstances warrant an exception? But this writing is lengthy enough already. Basically, I try to uphold my values, not just in action but also in thought. When I can't manage that, then I consider my motives and whether I will get the desired response. If the answer is 'no', then there simply is no point in speaking up.

A trying relationship, and why I'm in it

A couple weeks ago, I was talking with my oldest daughter, a young woman now, whose insights and direct approach I value and respect. Our topic this time was one I periodically bring up...how my older brother upsets me. Typically, I'll call him, get upset to some degree, not say anything to him about my feelings, then vent, vent, vent. My daughter on this occasion said with a bit of exasperation, "I don't know why you let him get to you, why you worry so much about it!"

And so I started thinking about this, not really for the first time but more in depth. The easy answer I've had is, "He's my brother; I love him". A little deeper, and I'll say, "He's helped me out over the years, when I've needed support the most he's been there".

Maybe some other time I'll talk about why I don't speak up with him, it's really a different subject having to do with how I try to support and respect people in general. For now, there's just a little background I'd like to share.

I'll call my brother Thomas for more ease in telling this story. Thomas is 8 years older than me. I have as much a role in creating the dynamics of our relationship as does he. Basically, Thomas has assumed a role of "Wise One", and I...well, not so much. At best, I'm a "student", and not a particularly gifted one at that. I tend not to voice my opinions with him these days, because quite simply they will not be valued, will not influence him even a little, and may be met with a bit of ridicule, which I prefer to avoid whenever possible. A recent example...I had brought something up which I thought was kind of funny. In the course of telling him about it, I mentioned that I like rules. He nodded thoughtfully and said, "Insecure people like rules because they make them feel safe: You are a very insecure person." I said, "Okay" and tried to go on with my story, which involved telling him why I thought a particular safety rule was in place at a local state park. About 20 seconds into my opinion, with a good dose of impatience, Thomas shook his head and said, rapid-fire style, "Stop stop stop stop stop!" Five stops for me and my silly thoughts. Of course he went on and told me the REAL reason for the safety rule, and that it had nothing to do with anything I thought it had to do with.

Well, now I DO need to stop, because just retelling that simple example gets me upset again and brings to mind a string of similar interactions with Thomas. This, though, isn't about that, but rather why I value our relationship, what I see when I think of him.

In thinking this through while talking with my daughter, I flashed back to my earliest memory of interacting with Thomas. Remember, he is 8 yrs. older, so as kids we were in the same house, but just didn't have much to talk about or do together. What we did share was a small home with 8 of us kids, a stay-at-home mom, and a dad whose work kept him away for weeks at a time.

Our mom could be cruel, prone to rages that were expressed mostly through screaming, not infrequently through hitting us with hairbrushes and slippers. When neither of those items were handy, a stinging slap in the mouth would have to do. Once she chased another, particularly rebellious, brother through the house with a broom. Much to my horrified delight, he turned on her and suggested, "Why don't you get on that broom and fly away, you old witch!" My now-pagan sister may take exception with that phrase, but still it makes me laugh.

One day, when I was 12, my mother was putting away groceries. I must've been underfoot, really can't recall, but in any event, I remember she turned her hateful anger on me. Her exact words don't come back to me either, but I clearly remember how I felt: I was filled with the certainty that my mother would be happier if I were gone. This knowledge was like a punch in the gut, she might as well have hit me that day; it hurt so deeply. So, I simply left.

With no plan, no money, no food, and no destination, I started walking. I cried nonstop. The small city we lived in ran into the next city, and still I kept walking. After several miles, the road I was on led to undeveloped, more rural landscape. Along the way, there was one lone restaurant. I trekked diagonally toward it, which led me through some deceptively wet mud. My shoes sunk in a bit. I needed to use the bathroom. Teary eyed, I went in and tracked mud through the dining area. I vaguely can picture a few customers looking at me with startled expressions, but no one stopped me or said a word.

Well, I walked back to the road and just stopped. What was I doing??? It made no sense to go on, but going home and being unwanted felt just as impossible. Still, I turned back north, toward the familiar...not consciously admitting that I would return. Tears still ran off and on, and my legs had begun to ache, but I did not stop.

When I had just crossed back into my own home town, a familiar car pulled up alongside me and stopped. Thomas reached over and opened the passenger door. Defeated and worn out, I climbed in. He didn't ask what happened, just opened his arms. Grateful, I collapsed against him and sobbed quietly. After a moment, Thomas gently said, "Don't let her do this to you." He took me home, but with a profound change...I didn't feel so alone.

This is my brother, and these are the eyes I will always see him through. He has through the years helped me in other ways, at key moments when his capacity for great caring, quiet kindness, and sometimes practical, concrete action has been needed most.