Friday, September 29, 2017

Fearing for the Future #FridayReflections

Today, on #FridayReflections, we have 10 minutes of free writing.

No editing.

Walking on the high wire.

Let me tell you about something that happened the other day.  I was in the building where I work, and someone flagged me down.

"I saw you at the XYZ meeting.  Are you doing the Front Door?"

I was taken aback a minute.  But then I remembered what she was asking, after she told me "I was at that meeting, too.  I was sitting in the back, and you were sitting (where I was sitting)."  Funny how that jogged my memory.  And then, I certainly did remember.

What that meeting was about was finding out something about a self determination program.  It may well be that eventually, all people with disabilities in New York State will be funneled through that program.  Instead of having others set up programs, the disabled person is basically given a budget and told to hire their own people.  You need to keep track of hours.  In fact, if you find out that the provider of services is not doing their job properly, and you don't immediately speak out, you (the disabled person, or the advocate) may be committing Medicaid fraud.

Anyway.  She asked if I had signed "Bil", my developmentally disabled brother in law, up for that program.  I said no. 

This is what she told me.  She has two children.  One is not disabled.  The other one has serious medical issues.  And she's been having some trouble getting services.  But she hasn't signed up yet, either.

Sometimes I think the pendulum has swung too far.  At one time, disabled people were treated as second or third class citizens, or even as little children, even if their disability didn't affect their mental functioning.  The "People First" movement has been a blessing to many of those people, who can now manage their affairs, with supports.

But then there are the other people.  The medically fragile.  The intellectually challenged.  Under many of those programs, they still have to make the same decisions as those without cognitive disabilities.  Or, they can be like Bil, in his late 50's, and never having had to take charge of his life before.

You just can't be thrown, if I can use an expression, into the deep end of the pool, with out having had swimming lessons. Good luck with that.

I fear for Bil in the coming years.

What if, one day, he ends up with no family to advocate for him?  The two brothers in his life are both older than him.

One day, we may look back on these days. 

And with that, I finally want to say that I still am not sure what direction I want to take this blog in.  I may blog for the rest of October, although I am participating in several challenges with my main blog.

If I stop publishing, I will let you, my readers, know.

(end of 10 minute free write).

Join Sanch Vee and other bloggers at #FridayReflections.


  1. We all get worried of our days to come. The what-ifs don't leave hold of us. Let's hope for the best. Best wishes for you and Bill.

  2. Thank you, Darshana. I have visited your blog under my "real" name.

  3. It does sound daunting not knowing what to expect. I hope things work out for you guys. I also hope you figure out a direction for this space.


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