By: Jackie Kancir, NCSA Executive Director
Across Tennessee, families caring for loved ones with severe autism and co-occurring mental health conditions (MH/IDD) are facing an urgent crisis. While state policy touts person-centered planning and community integration, the reality on the ground too often reveals dangerous gaps, inconsistent support, and devastating consequences—the antithesis of person-centered support.
Recent incidents highlight these disparities starkly:
A young adult with autism, while under the supervision of paid staff, eloped and was swept downstream in the Duck River. His rescue required nearly an hour-long water operation, yet there were no charges or accountability for staff negligence. Meanwhile, the family was denied waiver services they were promised, forced into repeated hospitalizations to manage crisis behavior.
Another family, desperate to keep their daughter safe from nocturnal elopement and injury, was denied use of a safety bed "tent" and wheelchair harness by their managed care organization. Despite a $250,000 annual budget ostensibly to ensure safety and dignity at home, the family cannot access approval for essential safety equipment. They face threats of service termination for trying to protect their child, while being blamed for “noncompliance” in closed-door meetings.
In stark contrast, a Chattanooga father whose autistic son eloped while he worked in their home’s attic was charged with felony child neglect after the child was found running naked in traffic. This criminalization stands in sharp relief to the impunity granted to professional agencies when their failures lead to similar or worse outcomes. While NCSA does not take a position on this father’s guilt or innocence and urges the public not to jump to conclusions before all evidence is presented, this case nonetheless highlights the double standard at play. Regardless of its outcome, the underlying crisis facing families of people with severe autism—Tennessee’s “empty waiver” problem and lack of real supports—demands urgent attention.
These stories are not aberrations—they are the predictable result of policy design flaws and systemic discrimination. NCSA calls this phenomenon the “Empty Waiver” problem: families with the highest-acuity needs—especially those managing aggression, elopement, self-injury—receive Medicaid waivers on paper but cannot find any staff or providers trained to actually deliver the approved services.
Key factors identified by the Tennessee Chapter of NCSA include:
Prohibition and denial of safety equipment. Families requesting coded locks, Lexan windows, bed tents, or transport restraints to prevent elopement or injury face systemic denials under the pretext that these do not "increase independence"—despite clear CMS guidance permitting such individualized safety measures in HCBS settings.
Absence of specialized staff training. ECF CHOICES providers lack any required training in safe, ethical physical intervention for clients who may suddenly display dangerous behaviors, leaving families without support options, forced to call law enforcement, or simply unable to use their budgets at all. Of note, TN START, is also prohibited from physical intervention when responding to the most aggressive and escalated incidents in the state for this population.
Punitive administrative culture. Families are routinely instructed to omit mention of challenging behaviors to "get staffed," blamed for failing to find workers in an inadequate network, or threatened with termination of services for "noncompliance" with unrealistic, underfunded, and ideologically rigid interpretations of independence and rights.
Meanwhile, when families do fail—through no real fault of their own—the state response is punitive and carceral. As seen in Chattanooga, overwhelmed parents can face felony charges for circumstances strikingly similar to incidents in paid, professional settings that result in no accountability at all.
This inequity is not merely a bureaucratic inconvenience. It is a civil rights crisis that violates the spirit of the Americans with Disabilities Act (ADA), the Olmstead decision’s promise of community inclusion with appropriate supports, and basic principles of parity for mental and behavioral health care.
Tennessee families are not asking for special treatment. They are asking for services and supports the state already promises but fails to deliver equitably. They are asking that their children's challenging behaviors—medical symptoms no less involuntary than seizures—be met with the same clinical seriousness, planning, and resourcing.
Without urgent reforms—including adequate funding across the lifespan, incentives for specialized staff training, streamlined access to safety equipment, and an end to adversarial, punitive waiver administration—Tennessee will continue to see more preventable tragedies, more fractured families, and more people with disabilities forced into costly institutional settings or even criminal justice involvement.
Importantly, these challenges are not unique to Tennessee. As highlighted in our recent post on the New Jersey Ombudsman’s report, states across the country are failing families with high-acuity needs. This is a nationwide crisis of unmet need, policy gaps, and human rights violations demanding coordinated, sustained reform at every level.
It is time for the state–and the entire nation–to treat these disparities with the gravity they deserve, to honor its commitments to person-centered care, and to make real the promise of inclusion for all people with disabilities.
For media inquiries, contact NCSA Public Relations Coordinator Mark Kendall