Do I Make My Struggles For Bil Public?

Up to now this has been somewhat of a private blog. But there are various blogging challenges I can join and if I did, I would have the opportunity to gain some readership for this blog.

But if I do that, I can never go back.  This blog will be public, and Bil, in a way, will go public with it.

I don't know if I want to do that to him.  I have the right to do whatever I want for myself. But Bil can't give informed consent.  It's as simple as that.

I think I made up my mind writing this post.  I stay private.  I don't have any right to expose Bil to the world.  He doesn't know that I am writing this blog, and I don't think he would have the capacity to understand what I am trying to accomplish.

So.....isn't it funny how you can expose yourself to the world on a blog but still stay private.

Is there anybody out there in a similar situation to me?

I guess I will never know.

Driving Mr. Bil

One of our concerns when my husband spoke to Bil's Medicaid Service Coordinator yesterday was about Bil and his need to get out into the community.

He loves to be taken to certain places - the Mall, Barnes and Nobles, Wal-Mart, even a CVS.  He likes to browse around and buy a treat for himself.  When his Mom visits someone, Bil likes to purchase a dessert - a box of candy, or something simlar.

When we come and visit, he wants to be taken somewhere.

My mother in law has increasing mobility problems. She is in her 80's and will one day reach that not-so-magic moment when she will have to hand over the car keys.

And then, Bil will need someone else to drive him.  We live over 100 miles away, so it can't be me or my husband doing the driving.

But he is very resistant to having others (other than my husband, or maybe one of his other siblings) take him places.  He really would like it, always and for all time, to be his mother.

This is one of the things we discussed which brings me to a rant I will publish soon - about Person Centered Planning.  Bil will be offered something, he will say no, and under the rules of Person Centered Planning his no means no.  So if his medicaid service provider offered him someone else to take him around, he would say no, reflexively.  Because of his disability.  Because he hates and resists change.  And a new driver is change.

But he has to be able to depend on people other than his Mom and his siblings.

More on this another time.  I think my husband made some progress on this issue.

Overworked and Overloaded

Well, my husband called Bil's Medicaid Service Coordinator and got "the scoop".  I'll blog about what my husband was told in the coming weeks.

What was remarkable - or, sadly, not remarkable at all - was the MSC's comment about his/her workload.

This MSC has almost 40 clients now. Bil is one out of  almost 40. 

Can you imagine someone having that kind of case load?  In New York State, a Medicaid Service Coordinator is a person who assists persons with intellectual or developmental disabilities in gaining access to necessary services and supports.  The job is quite complicated.  He/she must use a  "person centered planning process" and be knowledgeable of all kinds of state and local programs.  There is paperwork - an awful lot of paperwork.

The Medicaid Service Coordinator is supposed to be an advocate for the disabled client.  (I believe the technical term is "consumer" but I will use "client".)  The ideal is:  the client tells the MSC what is needed and the MSC somehow makes it happen.  Of course, this is quite difficult in real life.

And oh yes, the client has to be on Medicaid.  Doesn't matter if  he or she is a millionaire's child.  He or she has to be eligible for Medicaid (and meet other criteria) to be eligible for this service.

At one time the MSC had to visit the client once a month.  Now it is down to three times a year.  A certain percentage of the visits are home visits.  Otherwise, the client can be seen at work or somewhere else convenient to both.

I would really like to give a shout out to Medicaid Service Coordinators.  I can't believe they make huge sums of money.  It has to be dedication that keeps them going.  I suspect a high percentage of MSC's have a family member (child, parent, sibling) with a disability.  Just an educated guess.

And now, with that in mind - I will write more about Bil's situation in the coming weeks.

The 300th Post

Tomorrow my husband has an appointment to speak to Bil's Medicaid Service Coordinator.

We have so many questions to ask.

1.  What can we expect with continued Medicaid service cuts?
2.  What about housing lists for Bil? (A sore subject with his mother, but we have to face this.)
3.  What about the upcoming People First waiver?
4.  (related to #2) will supported housing be cut? 
5.  And last but not least, what can we do to help Bil?

It is so hard to peer into the future.  With this, my 300th post, I find that in a lot of ways, we are no further along with advocating for Bil than we were in post #1.  It's like hiking through quicksand!  Has there been ANY progress at all?

I hope we will find out tomorrow.

Autism and Aurora

Thank you blog Autism Policy and Politics, for alerting me to this.

I never thought I would be writing about the events in Aurora, CO.  If anything, if I had a genie, I would make a wish that the alleged shooter be made invisible, and that the media would never write another word about him.

So why am I writing about "he who caused Aurora" today and not about Bil?

It would seem that a morning TV talk show person made a statement.speculating about the mental condition of this shooter.  He said:

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society -- it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale" and "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses -- they can even excel on college campuses -- but are socially disconnected."

Well, some of this is true.

But diagnosing someone with autism, or Aspergers, not as a mental health professional but as a journalist?  What is his proof?  What is gained by this?

I know sometimes I play at "does this person have autism?" based on my knowledge of Bil, and other young people with autism. But never would I make my speculation public.  And, on top of this, autism is a spectrum disorder.  It manifests in so many different ways.

I know a young man with Aspergers who will smile at you, and even crack jokes.

I don't feel Bil could intentionally be violent.  (this is not to say a person with autism might react to a stressful situation, especially if they were being bombarded by sensory stimuli- but it is situation specific, and not a personal lashing out.)  And Bil craves company, but in his own way, and on his own terms.

This journalist, who has a child with Aspergers, has just tarred the name of Aspergers.

And one more thought - if it turns out that the allleged shooter has Aspergers - it does not mean all mentally ill people have autism.

If he doesn't retract this, we are back to the era where people with autism were mentally ill - and confined to institutions.

Thinking of Ourselves First

 In September of last year, our area, along with many other areas of upstate NY, was flooded.  We suffered a one-two punch between Tropical Storms Lee and Irene.

Not long after the flood waters receded and we started our recovery here in upstate NY, my mother in law called.

When are you coming down here next, she asked.  I've received some papers in connection with Bil, and I need you to look at them.

Unfortunately, it was impossible for us to come.  We had been impacted by the flood and had to worry about ourselves.

What ended up happening?  Well, she hung onto the paperwork and waited until we could come.  And as it turned out the paperwork had a deadline, which she missed.  I had to do some emailing to "make it all right".

**Sigh**

Thus goes long distance caregiving.

Why am I writing about this now?  Because, in a couple of days, my husband (after a lot of emailing) is finally going to talk to Bil's Medicaid Service Coordinator over the phone. We were supposed to do this in September of 2011 - but life intervened.

Amazing to think that it took us 10 months to get to the point where we could do this.  No, not because of being physically impacted.  I think there was a lot of psychological stuff going on.

I'm glad we are back on track, though.  But sometimes advocacy is impossible. Sometimes a caregiver just has to think of him or herself first.

A Penny for His Thoughts

Like so many with autism, Bil suffers greatly from sensory overload.  He can control it a lot of the time, but sometimes it just becomes too much for him.

Fortunately, he has figured out that if he is in a place he is familiar with, he can remove himself from the situation.

Today, Bil was visiting up here.  We didn't see very much of him.  Normally he would sit in another room and watch the Weather Channel. But this time, he disappeared for most of the visit.  I think he went to the bedroom where he sleeps during these visits, and (somehow) occupied himself.

I can feel for him because I know he was looking forward to this time with the family that lives here in upstate New York.  Yet, he wasn't able to be near us.

I think there was just too much noise for him this time.

He did join us for meals, but we were hoping to involve him in meal preparation. We weren't able to.

He also joined us when we were getting ready to leave to go to our house. (He was staying with another family member).  He stood silent.

Again, although he is verbal, it is difficult for him to communicate with us.  I really wish I could give a penny for his thoughts.