One More Working Day, A Day of Rest, then Three Days of Survey

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Mornin. We’re having a terrific thunderstorm. Weather watch says that it is moving about 35-40 mph and will produce penny-size hail, but the thing is ... it’s not expected to last more than about 15 minutes. Eh, we can do that standing on our head. Well, we couldn’t really stand on our head, but maybe balance on our left foot? Well, we couldn’t do that for 15 minutes either. Hmm, we could perhaps sip coffee for 15? Yeah, that’ll work!

Hmm, it’s over now...

Today is the last working day before the CARF survey. We’ll have to see how it goes. There is a family meeting today at the Center. We will be doing a survey presentation. I think I’m pretty prepared for it. The survey itself is thankfully in English and Spanish. That’ll help.

In the field there is a very high concentration now days about assisting the families with support. 

It follows a period of de-institutionalizing mental retardation. After that there was an insurgency of group homes, but there was never enough funds to cover the needs of the population. It’s also part of a move to include (inclusion) the population in the local communities.  It follows a stretch of Person-centered planning where providers teach the individuals to make their own decisions and normalization where the individuals are given the natural supports to lead a "normal" life in the community.

What this seems to me is that the funding sources (government) is leaning away from being a primary support. It is hoped that the community will assist in services, jobs, housing, transportation, etc. It feels like we are to become more a resource than a care provider.  It makes me feel kind of unsure of the future. I know that Illinois serves 63,000 people in developmental day training. Is this something in the future that will be phased out as well? Not sure. 

I know there are arguments about funding people who have disabilities, but in order for that to stop, the communities have to adapt and allow even individuals who have the most severe and profound disabilities to work for a sustainable income. It means some of us in the "normal" population will have to give up some of our positions to become a support to someone else, just so that they can function. 

It is not healthy to have their only contacts be with immediate family.  We all need social diversity, including the families.  It doesn’t seem fair that these 63,000 people should all be trained to bag groceries, but shoot, for now we feel fortunate when someone will accept one of our individuals for that position.

For those of you who worry about all your hard earned cash. The federal government has decided through SSI that no one with mental retardation should be funded for more direct cash than about $563 a month. I’d guess about 97% of that goes to the families to help toward support of their sons/daughters/siblings. I don’t know ... None of us "normal" people could live off it.

On another track ...

Yesterday wasn’t a very good day for me. It started off ok. I was doing a couple of late minute reports summarizing "incident/accident" reports. It was time consuming, but easy enough. Then we helped out with the client lunches alongside Sr. Tess. Toward the last ten minutes, our friend came in and whispered in our ear that he had picked up a couple of sandwiches if I cared to join him. Thought ... cool! He even got the pop.

Somehow though it had turned pretty bad during the meal. We had sat across from him at our other friend's desk. I think it started when he asked us to next write a report of all the reports I write. He said, that after the CARF inspection he was going to start managing what I should write and not write to expedite my time. Well, that might sound ok on the surface, but I took it as a pretty serious state of difficulty.

So, we complained heavily. Basically, we said Sr. Tess was the one who told us what to do and that we liked planning our own days and were doing quite fine with CARF on our own.

That didn’t go so well with him. First thing he did was to assure us that he was in a management position above us and that we would do as told without complaint. Then he said that we were only doing secretarial or statistics work and that because he was the manager, he would make the decisions.

That pretty much silenced us. He took then a business call on his cell and we went to our own office. Not too much later, we were at Sr. Tess door. We must have looked pretty pathetic, because she looked at our face and asked what was wrong. Our Ann part presented. Ann’s an adult part, but pretty shaky.

To make a long storyshort, Sr. Tess became angry ... she reiterated that she was indeed the only person who could give me "orders." She said a lot of other things, that included something about not undermining our ability, but we were upset and made more upset, because she said she was going to talk directly to our friend.  We were very afraid of him getting mad at us both as a higher-up and as a 10 year best friend.

Our friend had stated that he’d probably be fired after CARF, but Sr.Tess told us that was not even being considered. We added that probably if he left the right thing to do was to go with him. We were pretty close to a full emotional outburst.

We left the office hot and dizzy and to make matters worse, our friend was now standing across the hall, apparently waiting to see Sr. Tess too. We just wanted to run and hide. It was a pretty long time before he got back to his desk (the next room behind ours). He didn’t talk, he seemed to be focusing on clearing his desk. Then he left without saying good-bye. We spent the next three hours not knowing what had happened or if he was coming back.

We emailed Dr. M. who responded back by phone within the hour. We talked to him for quite a bit. By the end of the conversation, we were clearer and calmer in mind and knew the one thing we should really do was to clarify that if my friend was so upset that he would leave, if Sr. Tess would still have me, we wanted most to continue the work at the center with her as our boss.

As we were writing the letter, Macadam IM’d and maybe intuitively asked how we were doing. We told him about the situation and he supported our decisions made. We then finished the letter, it was brief, and left it on her desk. She was in chapel. We drove home thinking over what it would mean if our friend left the Center or our friendship.

About 3 minutes after getting home, our friend was on the phone. We talked and listened to each other. He said he wasn’t leaving, but that he and Sr. Tess were concerned that we not be upset. We were shaky all over again, and left the conversation very tired. We ate our dinner and went to bed and now, now is now.

I don’t know. I think it was a bad day.  Hmm, It's over now?

Picture - http://www.crh.noaa.gov/mkx/slide-show/tstm/slide8.html