Archive for September, 2012

If that makes me a liberal addict, then so be it.

Attending a protest rally at the state capitol. No Accountability? No copay!

We have been so blessed to live in Pennsylvania.  My boys get treatment and therapies for their autism that they never would get anywhere else, and that is what has kept us here in the Keystone State.

When our sons were first diagnosed, I was advised to apply for Medicaid, or Medical Assistance (MA).  I didn’t want to do that.  We didn’t qualify financially. But then I learned that, because we had kids with disabilities, we fell in a “loophole.”  We could get MA for them.  And unless we did have MA, my sons could not access certain necessary therapies and services.  Private insurance would not cover the treatments.

I continued to ask service providers, such as music therapist and Wrap Around service agencies, if there was any way I could private pay.  The answer over and over again was “No.”  MA was the only payment they would take. For us, MA was a necessary evil.  We didn’t want to take advantage, but we had to do so if we were to get help for the boys. So I swallowed my pride, went to the County Assistance Office to apply (I went at a slow time so that no one would see me… only to see someone who went to my church), and became a reluctant welfare recipient. It was one of the most difficult things I have ever done.

During the recession, we were relieved when PA passed a law that our private insurance had to cover autism services, but then were very disappointed when our boys were denied by our primary insurance.  We discovered that the law wasn’t being uniformly enforced. What was supposed to save the taxpayers $33 Million ended up saving about $980,000. We had to stay with MA whether we liked it or not.

Now there is an outcry, it seems, that families like mine, who don’t qualify for MA financially but have kids with disabilities, are taking advantage of the system and bankrupting the state.  We are abusing the system and getting a free ride.  How dare we.  And now we must pay copays which will be capped at 5% of our gross income. (None of our our expenses count.)

My feeling that we could pay a fair share has never waned.  However, I am so wary of the system. A quick list of reasons for my  misgivings:

  • We have a law that private insurance has to pay for autism services.  It’s not being enforced.
  • For three years in a row, the County Assistance Office (CAO) has lost my annual MA renewal paperwork and my boys lost services due to clerical errors.  This year, my reapplication was “stuck” in their computer system.   Of course, I wasn’t notified.  The services just got cut off.  When I called to see what had happened, I was told that they could see that I had indeed gotten all my paperwork in, I had a confirmation number (I submitted online), I did everything I was supposed to do. But they couldn’t access my reapplication, and  fixing it was my responsibility.  I went to the CAO three times to submit the same paperwork over and over and still had to call a supervisor… who ended up fixing the situation in 30 minutes after two months of turmoil.
  • I just got a confirmation that the DPW received my application for CHIP (Childrens Health Insurance Program).  But I didn’t apply for CHIP.
  • Other parents have been notified of their new monthly copay amount,  based on their gross income as calculated by the Department of Public Welfare (DPW).  Unfortunately for them, the DPW says that their gross income is thousands of dollars higher than it actually is.  And, as I said above, they have “no expenses.” The copay cap is then based on an inflated bogus income.
  •  When I call the customer service center with questions, they tell me to contact my case manager. When I call the MA Case Manager for the boys, the phone rings at least 20 times and then I am disconnected. I can’t even leave a message.
  • Our MA does not give us a statement of how much they are paying for services.  I don’t even know how much they cost.  How can I make a smart decision about service providers and copays when I am kept in the dark about cost?

I haven’t received my letter telling me what my monthly copay cost will be, but I am already worried. If the Department of Public Welfare can’t keep track of our paperwork, can’t add up our pay stubs that we submit annually and  inflates income, doesn’t answer when I call, and doesn’t let me know how much my kids’ services actually cost, then how do I know that our copays (which will probably be more than what we pay for our private insurance) are fair and going to the providers? How do I know we are not being duped?

I feel  trapped in a system where I have to have medicaid, and then punished for being in the system by being charged an exorbitant copay that doesn’t take into account all the expenses of caring for kids with special needs.

Our Governor made the comment that people are “addicted to services.” Other people say that the liberals are just making a big ol’ stink.

Well, if swallowing my pride and getting my boys services the only way I know how, and protesting when my boys and my family are unfairly punished for being trapped in the system makes me a liberal addict, then so be it.

Thanks for listening / reading my long post.

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Middle School Dance

My son came home from school on a Friday and said, “I’m going to the dance.”

I very intelligently replied, “What?”

I tried to get him to see that he would be safer better off and I would worry less he would have more fun if he went to a family game night with us.

No way. He said the dance would be fun.  He needed $4.

My interrogation began. Who would be there?  Did he know what happened at dances?  What friends of his were going?  Would his learning support teacher, Ms. H., be there?  He was quite tired of my questions until I asked him one that he knew.

“When does it start?”

“6:30.  And I want to be there early.  They’ll have snacks.”

Sigh.

I told my husband that our boy was going to the dance.

He replied, “But he doesn’t have any  money.”

“I’ll give him the money,” I replied.

“But sweetie… I’m concerned.”

“Me too. But our boy is asking to do something that other middle schoolers do and I want to support that.”

So we agreed to let him go.

I drove him to the middle school.  We stood outside with a group of very loud kids until the doors opened.  And yes, I walked in with him. And yes, I spoke with the principal and I breathed a sigh of relief when I saw Ms. H.  Yes, I made sure I had “spies” to give me a full report of what happened and yes, I made him tell me my cell phone number three times in case he got bullied and needed to come home. And yes, I did leave.  And YES, I did worry.

Turns out he had a great time.  He, like most of the middle school boys, simply walked around the dance floor eating candy and drinking soda.  He told me he danced fast and he danced slow.  And he told me that he wants to go to the next one.

My boy is growing up.  He cares now about doing normal middle school stuff.  He’s becoming independent.  And that gives me hope.

Things that make my life easier: Wildtree

Although my son is not currently on the gfcf diet, Wildtree make our lives easier even now. I wanted to share this with all of you!

Autism From the Lighter Side

We had already tried the casein free diet, and were trying our best to stick to it, when a specialist recommended that we do the gluten free, as well.

I cried.

And so my son started the  gluten free / casein free, or gfcf diet, in 2005.   Gluten is a protein in grains such as wheat and barley, and casein is a protein found in milk products.

I began my journey into gfcf cooking, which often times simply flopped.  Happily, I’ve come a long way since then! (I still haven’t figured out how to make gf bread, despite bread machines, mixes, and cookbooks.)

Fast forward a few years.  I was at a local grocery store and saw gfcf chicken nuggets, bagels, donuts, fish sticks, cereal.

I cried again, only this time for joy!

Disclaimer: I am a representative for the company I will talk about next,  and I do make…

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I’m my son’s classmate?

As I shared in a previous post, my son started going to a new school for his junior year.  He’s studying culinary arts.

One day I got an email asking if I’d consider taking a class with him.  Chef L., the culinary arts instructor, really wants my son to pass his ServSafe certification.  It will open up lots of job opportunities and increased his value as an employee.  Chef L. thought that my son and I could be study buddies, and since I have a food related business it might be an asset to me as well.  Moreover, I wouldn’t have to pay for the course, only the certification exam, and I could use my son’s textbook to study at home.

I agreed.

So far, the results are my own paranoia over germs in my kitchen.  Maybe a good thing here.

  • I’ve found recipes for homemade disinfectants that aren’t bleach based (can’t stand the smell, don’t want bleach spots on my clothes).
  • I made these disinfecting wipes to wipe down everything.  Several times per hour day.
  • I freaked out when my son put his grubby hands in the ice cube bin without washing them first. When I confronted him, he said, “What? They were mostly clean…” and I replied, “Hey!!!  I read the ServSafe book today, mister!!” and he proceeded to begin a competition over who knew more of the text book. Then I said if he would have really read and memorized the text book he would have never stuck his grubby hands in the ice.
  • I dumped out the ice.

We’ll see how this works.  As for now, I am really happy that he will be getting this certification, and I will do all in my power to force encourage him and the family to practice at home.

 

Netflix addiction

Hello.  My name is Elizabeth.  And I am addicted to Netflix

Specifically, I am addicted to the show Bones.  It all started when I was enticed by a web ad for free Netflix.  I wanted access to movies for the class that I teach, so I subscribed.

And then the journey down, down, down began.  See, not having cable / sattelite/ dsl tv, I was enslaved to an old fashioned antenna for many years to satisfy my tv watching pleasure.  Netflix opened up a whole new world to me.

First, I watched two seasons of The Killing in 4 days.

Then, I found Hot in Cleveland and watched all the episodes in one week.

Now, I am addicted to the show Bones.  Supposedly it’s a big hit show in its 7th season or something.  But I am on Season 2 and working my way through each episode.  After I get my Wildtree calls done, I can watch up to 4 episodes… per day.

And you know what, dear reader?  I think Temperence Brennen has Asperger’s.  Just sayin’.  And she’s a hero.
So I have renewed hope here!  My boys are awesome!  And my girl can kick butt, even thought she’s not a spectrum kiddo!

And now, I must go… I have to find out if Brennen and Booth will solve the next case and admit they they love each other.  Shhhhh….. don’t tell me!!!!!!

A New School

Well, my oldest son has started a new school.  So far so good!  After encountering disciplinary issues, academic issues, and other issues we won’t get into here we decided to look elsewhere.  Our journey finally brought us to Pathways.  It’s a private, Christian vo-tech school that just opened in our area.

My son decided to study Culinary Arts. The upside is that he’s learning to do things that will serve him well in the job market and in his personal life.  Believe me when I say that I don’t know of any girl past or present that would put up with his former sanitation habits.

The downside is that he’s trying to take over my kitchen again.  I let him try to cook dinner one night and it didn’t go well.  Despite frustrations all around, we all ate and were satisfied and lots of lessons were learned:

  1. Don’t assume that just because it’s a dish he’s cooked before that he is ready to cook on his own.
  2. We need guidelines as to what is really clean.
  3. Creative left overs are a good thing.

But most importantly, he has found a place that accepts him, that he looks forward to going to everyday, and that empowers him to believe in himself.  And that’s a good thing… that gives me hope!