Friday, November 4, 2011

What Autism Insurance Reform Means To Us

In case you haven't heard, Governor Cuomo signed the one of nation’s strongest autism insurance reform measures into law


It's about time.  Because autism ain't cheap.  And for a family like ours, it is a huge relief.  HUGE.  

Ever since September, we've been paying for Occupational Therapy for The Boy.  When The Boy was in CPSE and the DOE was paying for it, we had 2 hours of OT at the Sensory Gym.  Now that we're paying for it, we can only manage 1 hour a week. 

The going rate for an hour at a Sensory Gym = $175/hour.  That's $1,400 so far.  

We've also started with a private homebased ABA therapist.  I haven't even gotten that bill yet.  I'm trying not to think about it right now.  

Did I mention we want to start the theraputic listening?  Yeah, that's about $300 to start.

I don't think I've felt the financial burden until most recently.  Up until now, we've been able to manage.  I mean, last year was tough for us financially but we squeaked by.  But at some point, money runs out.

That's where we are. 

I hate that the phone rings constantly.  I hate that I have to check the caller ID before picking up because I'm hiding from some collection agency.  (I hate hiding the phone from The Boy because he's just discovered the "talk" button and likes to answer the phone when it rings.)  But it's for a $1000 medical bill that I just can't pay, not right now. Should I pay $1000 for the baby I lost when that money could help The Boy? And I really hate that it's a decision I have to make.

For the last few weeks, I've been thinking: how are we going to continue paying for the Sensory Gym and the ABA therapist?

Will it come down to other decisions like - Do I cut the cable?  To afford one more session of OT.  Do I only pay half of the Con Ed?

Should The Husband or me get a part time job? 

Do I drop out of graduate school?  After this semester, I'll be 4 classes away from an MFA degree.  I could teach part time.  But is it fair to take money and time away from The Boy?  I have a few more weeks until spring registration to decide.    

In order to pay out of pocket for services that The Boy needs, these are the sacrifices I am willing to make.  

And there's a small  huge part of me that's embarrassed by all of this.  Because The Husband and I both have good okay jobs.   Yet we still struggle financially.  And I shouldn't feel ashamed because I know, we are not the only parents out there making these kind of decisions.  It still doesn't feel good, admitting that we are living paycheck to paycheck.  But it's the reality of our world.  This is part of the journey.    

So...back to the Autism Insurance Reform Bill.   It's important.  It's necessary.  And it just may make our lives a little bit easier.  And maybe, hopefully, these decisions will not have to be made. 

Summary of 2011 Autism Insurance Reform Bill in New York:
S.5845 - Sponsored by Senator Charles J. Fuschillo (R-Nassau)
A.8512 - Sponsored by Assemblyman Joseph D. Morelle (D-Monroe)

The bill would:

  • Require private health insurance companies to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders including:
    • behavioral health treatment (such as applied behavior analysis)
    • pharmacy care (if the policy covers other prescription drugs)
    • psychiatric care
    • psychological care
    • therapeutic care, including non-restorative therapy (if the policy covers therapeutic care for other conditions)
    • any other medical care provided by a licensed health care provider
  • Impose no age caps, and impose no visit caps that apply solely to ASD
  • Provide coverage for applied behavior analysis to $45,000 a year; that limit will increase annually based on increases in the medical consumer price index
  • Allow deductibles, co-pays, co-insurance, care management, utilization review, external appeals, and use of provider networks only in the same manner as a policy applies to coverage of other conditions
  • Not affect any obligation to provide services to an individual under an individualized family service plan, an individualized education program (IEP), or an individualized services plan. The purpose of this bill is to require insurance coverage for services provided outside of an educational setting for services prescribed by a physician or psychologist
  • Prohibit an insurance company from terminating coverage or refusing to renew, adjust, amend, issue, or execute a policy solely because the individual has been diagnosed or received treatment for autism spectrum disorders
  • Take effect one year after signed into law
  • Apply only to state-regulated insurance plans; it does not apply to self-funded insurance plans which are regulated by the federal government under ERISA law

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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.