Eliminate the Unnecessary

When your child runs a fever and has a sore throat, here are the 4 easy steps most parents do:

  • Make a doctor’s appointment.
  • Get a diagnosis from doctor and fill your prescription for medications.
  • 5-10 days later, BOOM! Your child is healthy and back on their feet!

When you child has been diagnosed with autism, here is what you do?

  • Make a doctor’s appointment.
  • Get a diagnosis from doctor and prescription for 40 HOURS of ABA therapy plus possible OT and Speech.
  • Interview Board Certified Therapists and align best therapy options and get started!
  • It’s not that easy. A few road blocks occur:
    • You learn that most Primary Insurance Company’s do not cover the evidence based therapy needed for your child. (ABA therapy)
    • You research, hire an advocate, find some additional funds for a secondary policy specifically for your child’s ABA therapy needed. (This is when you hold your breath no huge expenses hit during the first month when you meet the hefty deductible. Yes, you will hit the average $7500 deductible within the first month of this policy if you average 40 hours of ABA)
    • You start paying monthly for a secondary policy to then learn that they only allow 25 hours AFTER your doctor has clearly recommended 40 hours for your child.
    • Insurance company then denies coverage for over 25 hours and requires for families to pay for a reevaluation every 12 months or IQ test in order to get coverage. (Average cost for these testing can range from $500-$2500 out of pocket)
    • You hold your breath again while you contact your original diagnosis doctor hoping they will write a letter to insurance company with a prescription for 40 hours so re-evaluations are not needed.
    • Just for the record, if re-evaluation are recommended from your diagnosis doctor, some doctors can take over 6 months to get in even when you are a current patient.  This obviously impacts your child’s development if you can’t get services needed and there is this delay.
    • Your Board Certified Behavior Analyst (BCBA) then starts building a case for your child for insurance carrier in order to FIGHT for the recommended hours requested.
    • To be clear, the insurance provider and their insurance psychologist, who has NEVER MET YOUR CHILD is denying coverage. However, the diagnosis doctor who spent 2 full days with your child is telling the insurance company the need.
    • Your BCBA has now spent countless hours on phone and providing documentation for the insurance company to provide services all at the same time the parents are holding their breaths providing required forms during this pre-authorization night mare.
    • Once documentation is sent in, you hold your breath an average of 10 more days hoping they give you 40 hours due to his severity of language impairment, communication, self-care, maladaptive behaviors and lack of social skills as well as safety concerns.

Every 6 months, Brad and I do this and today we are currently holding our breath hoping insurance provides us with 40 hours of services for Cody.  The first year, I spent crying during this authorization process. Now I know that it is out of my control and I just fight. Fight for my sons future and fight for his services that a doctor has given him in order to make progression due to his autism. Cody may be different but he is not less. He learns different and this therapy is geared to teach my child, the way HE learns.  He knows everything other children know but he may just not be able to express it the same with having Mixed Receptive Expressive Disorder and Autism.  These therapies give him a chance to be in a general education setting one day.

So as you can see, it’s not so simple as when your child gets a sore throat.  I think about how many children impacted by autism 10-15 years ago could not even get services.  There finally was a little hope provided and some families could seek coverage even if it was only 25 hours.  I even know mothers, that went back to graduate school so they could provide these services for their child. I won’t lie, I am afraid of what Cody’s future holds. And I am certain there are many other AUsome Mom’s in the same boat. You know what the crazy thing is? 1-68 children are diagnosed with autism. 1 and 68.

We need to be spending our time advocating for our children’s love, acceptance and development not advocating and fighting for their insurance coverage.






Published by mamalamaneustupa

Bio My name is Shelley Neustupa. I am a mother of two cool boys and a wife of 22 years to my high school sweetheart. My oldest son attends the University of Oklahoma. Boomer! My youngest is in 2nd grade and was diagnosed with Autism and Mixed Receptive Expressive Disorder at age 2. Since his diagnosis, I promised him I would advocate and educate as hard as he works each day in therapy. I began writing and have been able to touch many parents that may be new to this journey providing them with actual experiences (not candy coated), support and resources through my entries. Writing is my therapy and my hope one day that my nonverbal son will be able to take these diaries and speak about his own journey and how autism relates to his own experiences. Who knows he and his older brother may become National Speaker’s one day? Come along on our journey to better understand our lives through the eyes of a boy with autism, his Skilled Companion dog Jude, his big brother (and best friend) and mom and dad. My raw vulnerability captures the everyday moments of our journey and will bring even more awareness. A week does not go by where we do not learn something new about ourselves and I want to share these chapters with you. My Sons Undeniable Strengths… Extremely smart and figures out things quickly. Has a memory that allows him to remember more things than I could ever hope for. Persuasive by his personality and sheepish looks. Overabundance of stamina and strength. Loves the outdoors. Enjoys life and always has fun with an unforgettable smile. You can find us here: Writer: Autism Through His Eyes Facebook Instagram YouTube Pinterest Canine Companions for Independence News Interview Cody and Skilled Companion Jude - Our Story

One thought on “Eliminate the Unnecessary

  1. Thank you for writing this in layman’s words so that those of us who are clueless as to what you go through in getting therapy. Our insurance/medical system is so broken. My prayers are for you to
    never have to hold your breath again.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

<span>%d</span> bloggers like this: