Health

Readers Balk at ‘Gold Standard’ of Autism Treatment

January 20, 2026 • By gsswpadmin

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

KFF Health News received numerous letters in response to an article last month detailing how state budget shortfalls have led to cuts in therapies deemed essential by many families of autistic individuals. Here is a selection of those letters:

Autism Care: Pros and Cons

I am writing to provide additional context and research regarding your article on state cuts to applied behavior analysis (ABA) therapy (“It’s the ‘Gold Standard’ in Autism Care. Why Are States Reining It In?” Dec. 23).

While the article emphasized the negative impact of service hour caps or cuts, recent studies indicate that increased therapy hours do not necessarily lead to improved outcomes for autistic children. Although families have unique needs that should be addressed individually, it’s crucial to recognize that alarming predictions about service hour reductions are not consistently supported by research.

Additionally, the article overlooked the controversy surrounding ABA within the autism community. While some families report positive experiences, many autistic individuals and their families criticize ABA, citing instances of abuse and trauma. Emerging research is beginning to validate these claims of trauma associated with ABA.

To present a complete picture, it is essential to include autistic voices in discussions about ABA, particularly those who identify as survivors of the intervention. Responsible reporting should explore why ABA faces such widespread criticism compared to other autism interventions, like speech or occupational therapy. Furthermore, it’s vital to investigate how the ABA industry is responding to these critiques. Are they collecting data on harmful practices? Have they updated training requirements for therapists? Are they engaging with abuse survivors to improve their methods?

Ethics and safeguards surrounding interventions for vulnerable children must be a focal point in any discussion about the responsible use of taxpayer money for controversial autism therapies.

— Kim-Loi Mergenthaler, Burlington, Vermont

I work with Behaven Kids, a locally owned ABA therapy provider in Omaha, Nebraska. Thank you for your article highlighting the impact of Medicaid ABA rate cuts on families and providers in Nebraska.

As a local provider, I want to provide additional context. The article cited overutilization as a key reason for rate reductions; however, much of this overuse in Nebraska was linked to large, out-of-state companies with limited investment in the local workforce. These organizations often had external funding, allowing them to absorb cuts or exit the state.

In contrast, Nebraska-based providers depend on local clinicians and funding. The rapid implementation of rate cuts, with minimal adjustment time, has disproportionately affected local organizations committed to long-term care for families. Some families have faced service disruptions or lost continuity of care as larger providers scaled back or withdrew.

It’s crucial to differentiate between ethical, needs-based service delivery and practices that contributed to overutilization concerns. A more targeted policy approach, such as improved provider vetting or stricter authorization standards, could better protect families while ensuring access to quality local care.

— Whitney Reinmiller, Omaha, Nebraska

Why are states cutting back on what is often referred to as the “gold standard” in autism care? The reality is that it may not be the gold standard.

As I noted in one of my online publications, billions are spent on developmental disability interventions that frequently lack fidelity, effectiveness, or accessibility. Many children remain on long waitlists, particularly in rural areas, while families with high-needs children often go unsupported.

Research consistently shows that the most effective and cost-efficient interventions occur when care is:

Delivered in natural environments and daily routines.
Inclusive of parents and natural caregivers.
Provided with fidelity to evidence-based practices.

We must restructure the system to incentivize contextualized, parent-coached interventions and expand telehealth options. This approach will enhance capacity, improve outcomes, and reduce long-term costs to Medicaid, schools, and corrections.

— CR “Pete” Petersen, Hagerman, Idaho

I serve as the chief clinical officer for one of the largest ABA therapy providers in the country. In this role, I frequently engage with state Medicaid agencies and managed-care organizations on issues related to access, quality, and cost of autism services.

What I increasingly observe is that states are relying on blunt instruments to control spending, primarily through rate reductions and restrictive utilization management. While these measures may yield short-term savings, they often lead to unintended consequences, disproportionately affecting providers serving higher-need populations.

This approach results in workforce instability, reduced access to care, longer waitlists, and increased reliance on crisis services. Families face disruption and uncertainty, and states ultimately incur higher downstream costs when care becomes less effective or available.

A more sustainable path forward involves shifting focus from rate cuts to models that incentivize outcomes and appropriate reductions in care intensity over time. This requires standardized, risk-adjusted measures of progress and payment structures that reward timely, durable improvement rather than volume alone.

— Timothy Yeager, Fresno, California

The Broader Risks of Body Sculpting

Kudos on an excellent article (“The Body Shops: After Outpatient Cosmetic Surgery, They Wound Up in the Hospital or Alone at a Recovery House,” Dec. 23).

In addition to infections and medication overdoses, individuals may die from fat embolus, where a piece of fat tissue enters a blood vessel and travels to the heart and lungs. As a pathologist, I’ve witnessed this firsthand.

Those considering body sculpting should be aware that fat tissue is less vascularized than skin or muscle, making it more susceptible to necrosis or infection.

— Gloria Kohut, Grand Rapids, Michigan

ACA Consumers Feel the Pain

The recent Government Accountability Office report on fraud in the ACA marketplace should serve as a wake-up call (“Plan-Switching, Sign-Up Impersonations: Obamacare Enrollment Fraud Persists,” Dec. 10). For those of us working directly with consumers, it merely confirms what we have reported to the Centers for Medicare & Medicaid Services for years — with little response.

Obamacare is broken. Premiums have surged, plan options have narrowed, and affordability remains fragile for millions. Reform is necessary, and reasonable debate on how to fix the system is warranted.

However, consumers should not bear the brunt of these failures — nor should they be forced to absorb higher costs driven in part by CMS’s failure to enforce its own rules. Fraud distorts legitimate enrollment figures and inflates program costs, ultimately impacting everyday Americans trying to maintain coverage.

We have submitted extensive, evidence-backed complaints on behalf of affected consumers, documenting broker-driven fraud across the ACA marketplace. These reports include call recordings, enrollment data, and consumer statements. Yet, to our knowledge, CMS has not taken decisive enforcement action against even the most egregious offenders.

The misconduct is neither isolated nor subtle. We have documented unauthorized agent-of-record changes and impersonation, where brokers pose as consumers to override existing coverage. Often, fraudsters misuse Enhanced Direct Enrollment links, obscuring consumer intent and facilitating unauthorized enrollments.

Consumers pay the price. Many discover their coverage has been altered without consent, leading to unexpected out-of-network doctors or increased premiums. Others lose coverage altogether when fraudulent enrollments collapse under verification reviews. Meanwhile, the brokers responsible often continue operating under new agency names, repeating the same tactics.

The GAO report confirms that ACA broker fraud is systemic. Weak oversight and optional enforcement have created an environment where documented fraud carries little risk with significant financial gain. Predictably, abuse has expanded.

We can debate.

— Jason Fine, Fort Lauderdale, Florida

A Different Kind of Nursing Home Nightmare

We learned the hard way that long-term care facilities (nursing homes) seized the opportunity pre-COVID to hire a couple of physical therapists and convert a room into a “rehabilitation center,” suddenly becoming certified LTC/rehab centers (“Broken Rehab: They Need a Ventilator To Stay Alive. Getting One Can Be a Nightmare,” Dec. 2). They marketed this to doctors and hospitals, bringing in a new patient population.

Before the pandemic, LTC facilities had separate wings for rehabilitation patients, who received daily therapy. However, COVID led to a decline in rehab patients, forcing many nursing homes to close these wings.

To maintain revenue, they began mixing rehab patients with regular nursing home residents. This shift negatively impacted both patients and staff. Nurses accustomed to caring for LTC patients often do not prioritize the urgent needs of rehab patients, who require more frequent attention and medication.

Case managers in hospitals aim to expedite patient turnover, often without considering the unique needs of rehab patients. Families must be proactive in selecting facilities, as case managers may not provide adequate information about available options.

In my experience, I had to advocate for my wife’s care multiple times, insisting on medical attention when staff overlooked her declining condition. It’s crucial to find facilities dedicated solely to rehabilitation and licensed as such.

— Stephen Cripe, Monticello, Indiana