31 for 21: Necessary Overkill

*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*

Today, I sat through a very long, very tedious meeting known as an ISP.  We have these meetings periodically to touch base with some of the key players in an individual's life and discuss the "road map" for their future. I'm glad these meetings exist, but man are they tedious.  Particularly when the individual in question lives in a state-run group home. Holy cow.  4 of the clients in my room live in this type of setting, and here are some of the many things we've had to discuss over the course of my 8 months there so far:

-this person's wheelchair must be at a 45 degree angle during mealtime
-this person's placemat must be dark-colored so as to contrast with his plate and help him to see it
-this person needs to be unbuckled in his wheelchair while in our room
-we must never use one piece of cloth as both a protector of clothing and a placemat.  Two separate pieces of fabric must be used, and the one on the clothes must not be called a bib or look like a placemat.  we must have in writing that this piece of fabric is helpful.

And oh, there are so many more.  And it's not just the day program.  When I was a group home supervisor, I was flabbergasted by the nitpicky details that we got nailed on by state monitors. 

-a medication that was to be stored at a certain temperature came 1 degree short of that temperature when the temperature was taken in the middle of a dance therapy session. 
-another medication said in very tiny letters to be stored upright (I'm fairly sure just to avoid spillage).  We had to create a little cardboard brace for it to ensure that it didn't fall over in the medication bin
-at other group homes, a ridiculous amount of attention was given to pool gates, to having to-the-inch measurements be absolutely perfectly specific between bars, etc.

And again, so many more.  And I hate when we get nitpicky, and it's frustrating when you know that no matter how hard you try there will ALWAYS be something you're doing wrong.  But there's something that I always reminded myself of when group home monitors were doing their rounds, and that's helpful for me to remember now:

This is not how our government always acted toward persons with disabilities.  And this is not how governments around the world act toward them.  No, in fact, our government used to place everyone into huge institutions, where inhumane conditions often abounded.  In an institution in New York called Willowbrook, it was discovered that masses of humanity were kept in the dark, usually naked.  They were fed in sort of assembly line style, diseases abounded, family members were encouraged to stay away.  In Romania, just a few years ago, I met a 10-year-old who lived in a crib and rarely if ever left her room in the orphanage.  She had had physical disabilities at birth, which were now a million times worse as her body had sort of just grown into the crib. 

And so, when it comes down to it, I'm glad our government has a million tedious rules in place to ensure that we don't revert to our past.  I'm glad we have to prove every five minutes that we are treating these people as humans, because the other extreme is terribly disturbing.  I'm glad that a team of 8 of us spend 2 hours in a crowded room to ensure that we are doing everything "right."  It's hard, it's tedious, but I'm glad.