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The fight for affordable health insurance coverage for autism treatment

Affordable health Insurance Coverage for Autism

In the world of autism getting a diagnosis is just the first step, sometimes the real fight starts after that when parents start looking for affordable health insurance coverage for autism.


Receiving affordable health insurance coverage for autism treatment with experimental therapies is a real fight for parents. In fact, some of these treatments have been used since the 1960s ,yet are still referred to as “experimental”. Before I get started I must say that this isn’t the reality for some very lucky parents, namely the individuals that live in the 36 states that currently have health insurance mandates for private insurances and Medicaid concerning autism. More specifically the lucky bunch that live in one of the 24 states that currently have mandates requiring Applied Behavior Analysis coverage for autistic children, whether that coverage includes a cap or not.

For those of us that have private insurance or Medicaid in the states that don’t currently require coverage for autism services it can feel almost hopeless at times. I’m no exclusion to this, in one of my more current blogs I dive deep into my families experience with our insurance company and their refusal to pay for services that would make all the difference for my child. I’m still fighting that fight. Shall we take a look at the different insurance types and their impact on the lives of the families of autistic children?

While I am sure that this health insurance option is wonderful for some individuals, for the ‘autism family’ it falls a little short. While it seems like a steal for family of 4 that makes 100-150% the federal poverty level [or $11,490-$17, 235 a year] considering the monthly cost is a mere $100; when you have to live on that little annually coming up with an extra $100 to cover insurance is near impossible. If you make 300%-350% the federal poverty level [or $70,650-$82,425 a year] it’ll cost a family of four $700 a month and they aren’t eligible for subsidies beyond a reduced premium. The premiums: a choice of 90/10, 80/20, 70/30, or 60/40 all with a deductible of $6,350 for an individual and $12,700 for a family.

When you add in the costs for the therapies this insurance doesn’t cover, including ABA therapy, and the costs for co-payments on medications which alone can total in the $100’s for some families it becomes impossible to pull off still. This insurance has the potential of leaving a family of an autistic child feeling hopeless seeing as though the average lifetime cost of raising an autistic child comes out to somewhere near $3.2 million dollars, that equals out to $40,000-$60,000 annually, or around $1000 a month [a lot of times out of pocket].

‘Obamacare’ isn’t all bad though.

Obamacare Requires Health Insurance Companies to Eventually:

  1. Pay for Job-based therapies
  2. Stop denying, excluding, or limiting coverage to anyone under 19 based on pre-existing conditions
  3. Cover autism screenings [though it specifies ages 18-24 months only]
  4. Stop imposing lifetime spending limits
  5. Allow individuals up to 26 to stay on their parent’s health insurance
  6. Have an out of pocket cap for families

Private Insurance Companies and Medicaid
Your experience in this category will heavily depend on where you live.

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The Chief Complaints among Parents in Regards to Private Insurance Companies and Medicaid are:

  • Denials based on therapy being ‘experimental’
  • Denials based on autism ‘not being a medical problem’
  • Lack of billing codes
  • No providers in the insurance companies network to provide services
  • Funding caps won’t allow coverage
  • Child aging out of specific types of coverage
  • No coverage for medical inpatient facilities
  • Therapies being schools responsibility
  • Denials based on child’s age

We are talking about therapies that make all the difference to these children, these 1 in 68, yet they are unable to receive them based almost entirely on finances. No child’s ability to function should be based on their parent’s ability to pay for an affordable treatment or an affordable health insurance. It’s said that autism’s prevalence numbers are higher than juvenile diabetes, pediatric AIDS, leukemia, and muscular dystrophy combined. Given that alone you’d think the people running this country and the insurance companies we pay to back us would stop looking at the finances and start looking at the next generation of adults being raised without the essential therapies they need. They need to realize that at their hands we are going to have a generation of adults who won’t be able to be set free into the world because if we do they’d be living without the skills they need to support themselves.

Where the Parents are Left Standing in all this:

As the parents, who are responsible for the adult(s) our autistic child(ren) will become, we are left with a great deal of pressure on us to fight battles no parent ever thought they would fight, and cry tears that none of us should have to cry.

In the Pursuit to get Our Children Affordable Autism Health Insurance We:

  • Take 3rd and 4th jobs
  • Sell everything we have of value including our plasma and blood
  • Give up our retirements
  • Uproot our families to move to states that have coverage for what our children need
  • Beg our families for help to pay for coverage when moving is out of the question

There are parents that have refused things such as cursive handwriting classes for their child in order to ensure that their health insurance would continue to pay for social skills classes. Many of us have had things such as SLP [Speech Therapy], ABA [Applied Behavior Analysis], and OT [Occupational Therapy] denied based on things such as it ‘being our child’s school’s responsibility’ or because of the cost associated and subsequently had to hire an attorney or reach out to advocate groups. This issue reaches so deep into the emotions of a family that there are several documented accounts of mother’s killing their autistic children citing lack of support services and coverage from their insurance company as the explanation for their actions. I couldn’t find any cases of a mother with a neurotypical child doing this for this reason.

In Conclusion:
The fact that a parent has to fight like this for affordable medical care and therapy in this country is poignant to me. The fact that we have a disorder that effects so many children yet there’s so little support for said families from all directions is beyond preposterous. We don’t know what causes autism or how to effectively treat it, we have no medication aimed at the treatment of the core symptoms of the disorder and we constantly search for answers to these issues yet they fight us on the few things we know help them. We can’t be completely ungrateful for the insurance companies and Obamacare because without them we’d really be in trouble but we can say they aren’t trying hard enough, they aren’t providing enough help. One thing I know for sure is that something needs to change, unfortunately as of now no one in charge has a realistic recommendation as to how to create this change.

AutismActionPartnership: What is Autism? Facts and Figures
AutismSociety: Affordable Care Act and Autism
NPR: Parents Fight for Autism Insurance Coverage