Resident: County’s health insurance loss devastating to children with autism

By Natalie McCasling

My name is Natalie McCasling, and I am a mother, business owner, and resident in the City of Maricopa. The reason I am writing today is to relay the news and concerns I have about the most recent ACA Marketplace exit in Pinal County.

This week, Blue Cross Blue Shield announced its exit from Maricopa and Pinal Counties in the ACA Marketplace; they were the last and final insurer left in Pinal County. As of today, July 7, 2016, there are no insurers left in the ACA Marketplace for Pinal County; that means residents of Pinal County have zero options to select from when it comes to health insurance for 2017. With open enrollment mere months away, I am in a panic when it comes to insuring my daughter for the upcoming year.

Not being able to insure your 4-year-old daughter is concerning enough, but when she is also a child with special needs, it is absolutely terrifying. This should not even be a possibility in the United States in the year 2016.

Before we move ahead, I would like to look back at this past year and how fantastic the ACA Marketplace Plan was for my daughter.

My daughter, Chelsea, was diagnosed with autism at the age of 3.5. This means that she has not developed as a “normal” child should; it can be seen in her motor, speech, and social skills. When she was diagnosed, we were told that she has the motor skills of a 27-month-old and her speech was at the level of an 18-month-old. Imagine that: Your 3, almost 4-year-old child does not speak as well as most toddlers and she is in pre-school. We now knew why our daughter was standing in the corner in her traditional pre-school class, not interacting with any other children or teachers. We now knew why she could not tell us her throat hurt or the letters of the alphabet. She is a child with autism.

Being dealt that diagnosis was an incredible blow to our family — it is devastating not knowing if your child will ever talk or be able to do simple things like jumping — but it also opened the door to answers and treatments that my daughter so desperately needed. We now knew what we were up against and I was going to make sure that she got every bit of care she needs to be the best little human she can be.

After meeting with pediatricians, developmental pediatricians, child psychologists, educators, special education professionals, and speech, occupational, and physical therapists, we knew which programs and therapies we needed to get set into place for Chelsea’s path to success. We had speech, occupational, and physical therapies all in place through a traditional insurance plan. What that plan did not cover was applied behavior analysis (ABA) therapy.

ABA therapy is critical in the development of children with autism. So critical in fact, the state of Arizona enacted Steven’s Law in 2008, requiring insurance plans to cover ABA therapy. There are some exceptions to this law (small employers, self-insured and individual plans) where the insurance plans are not required to follow the law. This is where ACA became a huge victory in the McCasling household.

When ACA passed, it not only dropped the pre-existing condition exclusion which could prevent any special needs child from attaining health insurance, but it also required ACA Marketplace plans to cover ABA therapy in the state of Arizona (as well as 26 other states). This meant my daughter could receive the care at the early ages where it has been deemed the most successful without bankrupting our family. _1

I purchased an ACA Marketplace plan with United Healthcare for 2016, and Chelsea was able to start ABA therapy earlier this year. I cannot truly express in words how successful this therapy has been for her. I can remember at the age of 4.5, when Chelsea was finally able to tell us her name, and it brought tears to my eyes. It is something many parents take for granted — a child knowing their own name and being able to say it — but this was something we had been working diligently toward every single day for years, and here we finally were. You could finally ask her, “What is your name?” and she would now be able to say, in the sweetest little voice, “Chewwseea.”

Knowing her name isn’t the only accomplishment we have achieved while in ABA therapy. In the short seven months she’s been receiving ABA therapy, she has mastered many skills—meaning she can accomplish the targeted task 100 percent of the time — such as knowing and reciting the entire alphabet, counting to 20, jumping, recognizing and identifying all of the colors, and she has finally graduated to speaking in two-word phrases. While these are small accomplishments many parents take for granted, they are equivalent to scaling Mt. Everest in our household. However, at seven months in, we have not successfully made it to the summit. We have started our climb and are making great strides, but it will take many years, if not a lifetime, to achieve. We also cannot accomplish this journey alone; we must have our trained, expert team to get us there as this is not a solo adventure.

This is why I was devastated to hear from our insurer that they would no longer insure within the Marketplace in Arizona; I was also concerned to hear that eight rural counties in the state would be left with one insurer. When that insurer (BCBS) announced its exit earlier this week, I went into a downright panic. Now I have zero options for health insurance for my daughter that will cover this life-changing ABA therapy next year.

Without insurance coverage, I am forced to choose between her not receiving the therapy and covering the cost out of pocket for around $50,000 per year. While it is worth every penny, it is not an expense most families can cover. I know as a small business owner, this is not something I will be able to cover and I will have to look at moving out of state to attain the insurance we need because Chelsea not receiving ABA therapy is not an option. The children in Pinal County missing out on the life-changing therapy they need to become the most successful people they can be should not be an option either. We have been left on the side of the world’s tallest mountain without any options to scale it. If we aren’t climbing, we are either falling or standing still to wither away. Neither option is a good one for children with autism; they deserve the chance to climb.

I am writing to you to not only share my story and devastation over this final ACA Marketplace exit, but I am also pleading to local and federal lawmakers to enact change so this does not happen to the children in Pinal County who need it the most.

While I write about children with autism who need coverage, this is about all of the residents in Pinal County who will be left without ACA Marketplace insurance options next year. Pinal County may be the first place this has happened in the nation and if change does not take place, it will not be the last.

Let’s work together to close the loopholes in the laws. Let’s work together to insure the children in Pinal County who need our leaders to look out for them the most. Let’s work together to make sure none of these children and families are left devastated in the insurance marketplace in Arizona in 2017. Let’s make sure no one is left uninsured in the United States in 2017. Let’s climb this mountain together.
I appreciate your time and consideration in this matter.

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Natalie McCasling is a resident of Maricopa.

1_ PubMed.gov publications: PMID: 25241118; “Assessing progress and outcome of early intensive behavioral intervention for toddlers with autism.”
PMID: 25190094; “Comparison of behavior analytic and eclectic early interventions for young children with autism after three years.”
Further studies can be found here