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.

3 responses to this post.

  1. This makes my want to rise up and make them do it right. “We have a law that private insurance has to pay for autism services. It’s not being enforced.” This and all the other issues you mention are…lots of words. There are likely attorneys, private and from nonprofits, who would take this case. There is protesting and posting blog and there is advocacy and activism that produces change. I don’t have standing to move this case. You do.


    • Thanks, LD. I was just notified of a resolution going through our state house to review the new copays and how they are collected / assessed/ etc. and then delay the copay system until November 2013. Hopefully this will happen! I have a meeting coming up with my state representative. Again, we aren’t against paying…. just against the methodology and bureaucratic red tape. In our local paper today it was reported that one family had their annual income inflated by $100,000 / year. I also read that some of the insurance companies were not required to comply with the new insurance law… small businesses, etc. But my husband’s company/ insurance at the time of the law’s enactment definitely met the requirements… they must have found a loophole. OOPS.


  2. We got our letter regarding copays… our copays will indeed be capped at an amount $150+ higher than what we pay for our primary insurance. Bring on the house resolution!!!


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