A Day of Advocacy

On Tuesday, February 7th I participated in a Focus Group to offer my input regarding Medicaid services in Ohio.  This group was open to Medicaid Consumers who depend on a variety of services such as but not limited to; assisted living, Home Health Aides, and home delivered meals.


I found this meeting to be hopeful, entertaining, enlightening, sad, and frustrating.  Let's start with the frustrating stuff so I can hopefully end this blog entry on a positive note.

• The room this meeting was held in was way too small.  Attendees had to call ahead to register so the organizers had to have an idea of how many people to expect.  Also, when you invite a bunch of people with varying degrees of physical and non-physical disabilities somewhere, then you really need to consider the fact that many of them may be using mobility devices like wheelchairs, walkers, or dogs.  All of these things take up space!  A man with multiple disabilities almost fell on me because he had to step over a Service Dog.  If my Aide did not have lightening quick reflexes, I would not be typing this blog entry right now.
• I did not care for the way the information was presented to those with non-physical disabilities.  It was obvious that many of them lacked the intellectual capacity to process the information like the rest of us which caused them to react in a scared, panic-like fashion.  I believe they deserve to be informed and should have an opportunity to voice their complaints and desires but it should be done in a way that is not traumatic for them.  They require and deserve a bit more compassion than what they got yesterday.

Ok, now the sad stuff.

• I met an older lady who is afraid to ask her Home Health Aide to cook food for her, run the vacuum or much of anything else because her previous Home Health Aide was so abusive to her that she'd rather compromise her needs than give her new non-abusive Home Health Aide a reason to quit.
• A middle-aged man who is very unsteady on his feet, even with his cane, is repeatedly denied Home Health Aide services because he is considered "too independent."  By his appearance, I would say that he most likely has not had a proper bathing in a while.  I can't imagine how hard and dangerous it would be for him to get in and out of a shower by himself.

Let's move on to enlightenment!

• I was very pleased to hear that I'm not the only person with a disability in Ohio who has wonderful Home Health Aides!  Those of us who have these great care-givers all have the ability and the drive to advocate for ourselves and assemble our own support system.

Now for the amusing stuff!

• Attendees continued to enter the room for about the first 10 minutes of the meeting.  My eyes and attention were focused on the group's Facilitator who was speaking.  When I felt someone sniffing my leg from under the table, I almost screamed!  Fortunately I looked first, because it was just a curious Service Dog.
• The previously mentioned Service Dog was on duty with a nice, older lady who's eyes were 'looking' in two different directions.  My excellent deductive reasoning skills lead me to understand that this lady is blind.  I soon realized that everyone does not have deductive reasoning skills.  When literature was being passed around the room, the woman seated next to the blind lady tried to pass her the literature.  The blind lady did not take the literature because she could not see that something was being passed to her.  So, do you think that waving the literature around like a maniac would force the blind lady to see?  As entertaining as it was, I had to intervene and kindly handle the situation.
• My audio recording device was better than the Facilitator's.
• There were a few other situations where I had to contain my laughter because it was just too inappropriate to express amusement.  However, I will say this.  More than once I thought of that old movie called "FREAKS."  I say this in a complimentary fashion.

There were moments of hopefulness.

• At intermission / break-time, a professional looking woman approached me with an interesting proposition.  She said that a new talk show is being developed, she's going to be the Hostess and she'd like me to be one of her guests.  I'll keep you all updated as that tale unfolds.
• At the close of the day long meeting, the Medicaid representative asked me to stay.  I was a bit nervous about this because my sources have informed me that I am on a "difficult Consumer" list.  The representative was very nice though and addressed an issue I brought up earlier in the meeting which was overlooked at the time.  The issue is known in the Health Care world as "Colorado Norms."  Colorado Norms provides what I call a "dirty loop-hole."  Medicaid/Medicare can honestly say that by adopting Colorado Norms, life sustaining care will not get taken away from those who depend on it.  However, Colorado Norms does in fact regulate this care.  Example #1 Transfers using a Hoyer lift may not exceed 15 minutes.   Example #2 Bathing may not exceed 30 minutes, once per day.  I made it very clear to this Medicaid representative that the people with disabilities in Ohio will not tollerate the implementation of Colorado Norms.  I also gave him my blog address and suggested he look around and see what happens when the State of Ohio does not protect the rights of its people with disabilities.

In closing, thank you LEAP of Cleveland, Ohio for hosting this event.  The Facilitator said that this group of Consumers from Northeast Ohio was the largest and the most enthusiastic.  That's just how we roll...  

Peace!