Sunday, February 17, 2013

Call Back Roulette

The wonderful world of advocacy and customer service!  Don't you love it!

My husband and I both, and a third party helping us, been having a frustrating week with customer service.  The latest is my mother in law's alarm system.  Before that, an online purchase.  Before that.....


Alarm system, bounced back and forth, voicemail menu doesn't give me the option I need, I finally reach what I think is the correct extension, am put on hold for over 5 minutes and then told to leave a message.  No option to continue to hold.  I would have; I'm doing plenty of other items anyway but now I have to hang around for a call back. If there is an emergency at my mother in law's house, will they give the same customer service????

I'm also waiting on something that Bil's medicaid service coordinator is supposed to be sending, and I haven't received yet.  Maybe it's just late in the mail.

Calls to my mother in law's lawyer re a paper he drew up for her.  No call backs. Guess who is not going to get our business in the future.  A lawyer who can't return a phone call is scary, because legal work is full of deadlines.  Will he meet any deadlines needed?  My mother in law is of the age where she can't make call after call after call. At least if his office can't speak to us, could they tell us what we need to do so they can?


Sunday, February 10, 2013

When No is Not No

We are having some success, thanks to help we have gotten from an unexpected source, in perhaps getting some movement from the agency that handles Bil's Medicaid Service Coordination.

What I was unable to do, this person (who has cost us money, but has been worth it) has been able to - well, at least get their attention.

We are waiting to hear back.

The aim is to get Bil training to increase his independence, and, indirectly, allow him to be of more assistance to his Mom.  His Mom needs a lot of help around the house now, and Bil is definitely in the role of caregiver to his elderly Mom.

You would think this would help the taxpayer.  But until now, I've just received excuses.  What they will do is ask Bil, 'do you want to...." and of course he says no. He, after all, has autism.  He is anxious about any change in his routine.  He needs to be coaxed, and then he is OK.

But, so much easier to take his automatic no as a "no", because then they don't have to bother, don't have to give the service.

Well, this paid person has probably done about all she can do.  Isn't it sad that we had to spend money to get what Bil is entitled to?  Yes, entitled to!  He is a taxpayer.  He works for a living.  It doesn't matter that it is at a sheltered workshop.

He should be a valued member of our community, but that isn't the fate of most people with disabilities.

So much easier to take their "no" as a no, and not give them the opportunity to be more independent.

So much progress still needed - but it's a start.

Saturday, February 9, 2013

Bil at the Gym

Bil went to a health club last week!

Well, he didn't do much of anything there.  But the fact that he was there was encouraging because of the reason he was there.

His mother took an exercise class - water walking.  She finally (a great victory) allowed herself to be talked into going to a health club. She has a one month trial membership. She had resisted this for years, as her physical condition deteriorated.

Bil's mother is at the point now where she doesn't want to drive by herself.  So, Bil came in the car with her.  I'm not sure what he did for the time she was there but they do have a little cafe there.

I wish so much we could get Bil into that pool, but I somehow don't think that is ever going to happen - unless his mother talks him into going with her.  And I am not sure the club will allow that unless he buys a membership.

The memberships aren't cheap either, sadly.

Right now, our focus is on Bil's Mom.  If she doesn't want to fall again, she must work on her balance. She must use a walker too, but that's another story.

Right now, every time we see Bil, he seems to have gained more weight.  I think he would at least walk in the mall if accompanied by someone.  But his Mom can no longer mall walk and we live hours away.

Right now, we'll just have to put these concerns aside and see what happens with his Mom.  There's only so much we can do at one time.

Saturday, February 2, 2013

Bil Speaks for Himself

It was something to see.

I would almost call it a miracle.

Bil knew that someone was coming to my mother in law's house to access her physical condition.  Normally, if a stranger had come to the house, he would have hid in his room.

Not this time.

Bill sat on a chair, near the recliner my mother in law uses, as the person interviewed my mother in law.

At one point she denied having fallen for almost a year, and Bil immediately corrected her, listing times she had fallen, and one time she had tripped.  He named dates and places.

He left at one point, but came back a few minutes later.

He stayed there for almost the entire time.

My theory is, he is deeply concerned for his mother in law, and sensed this person was there to help.  He still wasn't able to articulate his thoughts, but the fact that he stayed, and the fact that he wouldn't let his mother lie, I think spoke for herself.

Good for him.

If only we could wave a magic wand and give him typical abilities to interact with people.  What might we see?

But last week, Bil spoke for himself.  And I was so proud.