05 Nov The False Choice Between Fighting Fraud and Funding Care
By Robert Naseef, PhD, Psychologist and Author, Autism Society of America
Reports of Medicaid fraud are deeply troubling, and those responsible should be prosecuted. But fraud has become the convenient justification for policies that make it harder for families to access the medical care, treatments and supports they depend on.
Our government has the tools to investigate fraud without placing additional administrative burdens on people with disabilities and their caregivers.
Recent reports of fraud and abuse in several states are disturbing, especially because they are making it even harder for families to access the help they desperately need to care for their autistic children and adults at home.
Of course, anyone defrauding Medicaid and exploiting individuals with developmental disabilities should be held accountable. However, the response should not unfairly impact families who legitimately depend on these services every day — whether through cuts to community supports or mounting red tape that delays access to prescribed medications.
I write from my own experience as the father of a nonspeaking adult whose group home and medical care are funded almost entirely by Medicaid.
My son, Tariq, now 46 years old, has been in residential care since he was 9. He needed round-the-clock care because he did not understand danger, did not sleep safely through the night, and was at constant risk of wandering. One night, he climbed down the fire escape of our apartment while everyone was asleep. Fortunately, I found him at the playground next to nearby train tracks, playing joyfully on the swings.
Going through due process with the school district to get a residential placement was an excruciating experience. I finally found peace and acceptance knowing that my child was safe. A few years later, an autistic boy in our neighborhood died after wandering onto those same train tracks at night.
That tragedy reinforced the fear I lived with every day when my son was still at home. Today, my son’s services and medical care are funded by Medicaid. Protecting those services is not simply a policy issue for my family. It is a matter of safety, dignity and quality of life.
To understand why this matters, it is important to understand what Medicaid makes possible. Home and Community-Based Services allow individuals with disabilities and chronic health conditions to receive long-term care and support in their homes and communities instead of nursing homes or institutions.
These Medicaid waivers have never been easy to obtain and waiting lists in many states are already years long.
Access to care depends on more than waivers, though. Federal health policy also determines whether people like my son can get treatment in ways that work for them.
The Ensuring Pathways to Innovative Cures Act, for example, would help protect at-home care by ensuring that oral, easy-to-take medications are not penalized or delayed in favor of complex hospital procedures. That matters for individuals like Tariq, who can experience severe sensory overload or distress during medical trips, and for whom taking medication at home is essential to receiving care safely and comfortably in their community.
Accessing a prescribed medication can also be a hurdle in its own right. Efforts to curb fraud, waste and abuse in Medicaid should not turn into more red tape between patients and the care they need.
For families like mine, a prior authorization requirement is not a minor paperwork step. It can mean weeks of waiting for a medication that a patient like my son depends on to stay well.
As states implement changes following federal policy shifts, many families are worried about what comes next. Autism Society of America affiliates across the country report that families are already being required to reapply for waiver services without clear information about the criteria or process.
For families already navigating a complicated system, uncertainty alone can be overwhelming.
We should absolutely investigate fraud, strengthen oversight and hold bad actors accountable. Protecting taxpayer dollars, encouraging medical innovation and protecting people with disabilities are not competing goals.
We can and must do all three.
The true measure of our Medicaid system is not only how effectively it identifies fraud, but whether it continues to protect the children and adults whose lives depend on it. Families like mine should not have to fear losing the services and treatments that keep our loved ones safe because of the actions of those who abuse the system.
The Autism Society of America believes every autistic person deserves access to the supports and health care they need, when they need them, in ways that respect their rights, dignity and autonomy.
As policymakers continue efforts to strengthen Medicaid, they must ensure that legitimate beneficiaries are protected and that essential services and treatments remain available to those who depend on them every day.
Robert Naseef, PhD, is a psychologist and author who serves on the Panel of Professional Advisors for the Autism Society of America, and the parent of a nonspeaking autistic adult. He can be found here.