When the Feds announced they were charging 15 individuals with Medicaid fraud last week, I wasn’t prepared for the rage that overcame me. I’m one of many parents for whom the autism fraud scandal hits far too close to home, parents who truly heard the words, “He has autism.”
More than 30 years ago, the word “autism,” unfamiliar, but ominous, catapulted me into a state of shock, then took me down a path with no roadmap, only a goal — to do whatever I could to help my son live as “normal” a life as possible.
I soon learned it was not a path to be traveled alone. Over the years, there would be teams of people, all temporary, who shared the journey.
Eventually, I realized autism was not a problem to be solved. That realization brought some peace, disrupted by searing moments of jealousy as I observed others living the life I’d imagined would be ours. I don’t imagine the cycle will ever end, for a parent’s hopes and aspirations endure, though the image and nature of success can — and has — changed over the years.
When hints of autism display themselves and parents turn towards the system to obtain first a diagnosis, then services, the wait can be interminable — and detrimental to a child for whom the developmental window will close before long.
Once children with autism diagnoses are in the school system, they’re entitled to support until they age out at 21. That support is the scaffolding that helps students and families to manage just two decades of a potentially long life.
The initial diagnosis is jarring and often unexpected. But when your child exits the school system, the true weight of the responsibility comes to bear. For as our kids age, so do we. And that forces us to confront frightening questions about the future.
As the child with autism becomes an adult with autism, families deal with new people, systems, and services. Parents must take a huge leap of faith and trust strangers to help our vulnerable loved ones navigate a world fraught with danger and risk.
Depending on the individual’s circumstances and abilities, they might need help with employment, housing, activities of daily living, personal cares, or some combination thereof. Entry-level staff typically serve as caregivers, earning a modest wage, often with their sights set on the next opportunity. For clients who need consistency and struggle with change, the revolving door of caregivers is a big stressor.
We spent years developing the infrastructure for my son to live a relatively independent life — premised upon paid staff helping him to manage his daily needs. But that infrastructure feels very fragile in this moment, not just for him, but for others like him.
Trust is the foundation upon which we place our loved ones into a system in which strangers meet a host of needs. When a network of people hijacks the system for their own financial gain, that trust is shattered.
Medicaid fraud is not a victimless crime. All taxpayers, but particularly those who rely upon these programs, are the victims.
Government officials are expected to be good stewards of taxpayer money. They’re supposed to provide oversight of programs. The picture the Feds presented last week demonstrates neither of these occurred. And that’s infuriating.
With autism services under a microscope now, there are many questions, some with potentially worrisome answers.
Always top of mind is whether the agency that provides vital services to my son will continue to operate.
But more globally, what will happen to the families who have been waiting for diagnoses and services, for whom time is of the essence?
What will come of the agencies for whom funding has been withheld by the Feds due to the Walz administration’s failure to cooperate with investigators?
What other fraud exists that might jeopardize important programs?
Will there be an exodus of caregivers?
Then there are the questions that provoke my rage.
If the allegations are true, what kind of sick people pretend their children share the devastating reality of so many others?
How dare they, for their own financial gain, jeopardize funding and programs upon which individuals and families truly rely?
And how dare the Walz administration fail to act when the evidence was in plain sight for so long?
People who view autism and related services as a pot of gold to be pilfered are vile opportunists who deserve a special place in hell.
And the Minnesota officials who either turned a blind eye to the fraud or were complicit in it deserve the same fate.
A retired attorney and author of the award-winning memoir, “Bitter or Better: Grappling With Life on the Op-Ed Page,” Caryn Sullivan has inspired readers with her thoughtful commentary for the past two decades.
The views and opinions expressed in this commentary are those of the author and do not represent an official position of Alpha News.
Caryn Sullivan
A retired attorney and author of the award-winning memoir, "Bitter or Better: Grappling With Life on the Op-Ed Page," Caryn Sullivan has inspired readers with her thoughtful commentary for the past two decades. To learn more about Caryn’s work or to connect, visit carynmsullivan.com
