Research and clinical experience point to different paths forward. Payment models that reward meaningful progress, stronger oversight of out-of-state chains, and supports that embed therapy in home and school routines can expand access without destabilizing local providers. At the same time, reports from autistic adults about harmful experiences with applied behavior analysis deserve careful, evidence-based investigation and changes to training, safeguards, and oversight.
This conversation matters for human potential and inclusion. How we design services determines whether autistic people gain skills on their own terms and whether families can count on steady, respectful care. Read the article to see how budget choices, provider practices, and lived experience intersect, and to explore what reforms could make services more effective, ethical, and equitable.
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 dozens of letters in response to an article last month describing how state budget shortfalls have led to cuts targeting therapies that many families of autistic people call essential. Here is a sampling:
Autism Care: Pros and Cons
I am writing to provide additional context and research for your article on state cuts to the autism therapy known as applied behavior analysis, or ABA (“It’s the ‘Gold Standard’ in Autism Care. Why Are States Reining It In?” Dec. 23).
While the piece focused on caps or cuts in service hours being a harmful thing, there have been recent studies showing that increased hours of therapy do not lead to better outcomes for autistic children. While different families certainly have different needs that should be addressed individually with clinicians, and while some children may struggle with reduced intervention hours, it’s important to note that dire predictions about families losing hours of services are not borne out by research.
Another important piece of context missing from this article is that ABA is considered a controversial intervention among many in the autism community. While many families have positive experiences, many other families and autistic adults strongly criticize ABA and have described widespread abuse and trauma from it. Newer research is beginning to provide empirical confirmation for these reports of trauma from ABA.
An article about ABA that leaves out this controversy is not a complete picture. At a time when autism is on the national stage and autistic people are routinely dehumanized by our leaders in government, it is critical to think about how coverage about autism is framed and whose voices are centered and included.
In stories about ABA, I believe it is crucial to include autistic voices (such as people who identify as ABA survivors, and autistic parents of autistic children, who are more likely to avoid, quit, or criticize ABA). It is responsible reporting to ask why ABA is widely criticized by so many who have experienced the intervention, and why this criticism is unique to ABA and not seen with other autism interventions, such as speech therapy and occupational therapy. Additionally, it’s essential to investigate the ABA industry’s response to these critiques. (Has the industry collected data or conducted research on what aspects of its past or current interventions have caused harm? Has it changed training or certification requirements for interventionists to address any “bad apples” among therapists? Has the industry engaged with abuse survivors or autistic-led organizations in making changes to practices and policies? Have safeguards been created and required in behavior plans? Have policies and ethical guidelines been updated to address critiques from autistic adults?)
Ethics and safeguards, as well as current research, surrounding an intervention for vulnerable children are a critical part of any article about whether taxpayer money is being used responsibly for a controversial autism intervention.
— Kim-Loi Mergenthaler, Burlington, Vermont
I work with Behaven Kids, a locally owned ABA therapy provider serving families in Omaha, Nebraska. Thank you for your recent article highlighting the impact of Medicaid ABA rate cuts on Nebraska families and providers.
As a local provider, we wanted to offer additional context. Overutilization was cited in the article as a primary driver of rate reductions; much of that overuse in Nebraska was associated with large, out-of-state companies operating with limited long-term investment in the local workforce. Many of these organizations had access to external funding or staffing pipelines, allowing them to absorb the cuts or exit the state altogether.
In contrast, Nebraska-based providers rely almost entirely on local clinicians and local funding streams. The rapid implementation of the rate cuts, with only weeks for providers to adjust, has placed a disproportionate strain on organizations rooted in Nebraska that are committed to long-term care for families here. In some cases, families experienced service disruptions or lost continuity of care as larger providers scaled back or withdrew.
We believe there is an important distinction to be explored between ethical, needs-based service delivery and the practices that contributed to overutilization concerns. A more targeted policy approach, such as improved provider vetting or more rigorous authorization standards, could better protect families while preserving access to high-quality local care.
If not policymakers, then better to inform families and pediatricians. Many people continue to work with out-of-state providers without understanding the ethical use issues or that their services could be at risk due to the ever-changing market and noncommittal companies.
— Whitney Reinmiller, Omaha, Nebraska
Why are states reining in the “gold standard” in autism care? Well, frankly, it’s not the gold standard.
As I wrote in one of my online publications, nations are spending billions on developmental disability interventions that too often lack fidelity, effectiveness, or accessibility. Meanwhile, hundreds of children and youth remain on long waitlists, many in rural areas receive no services, and families with the highest-needs children often go without support.
Decades of research 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 financially incentivize contextualized, parent-coached interventions and expand telehealth options. Doing so will increase 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 providers of ABA therapy in the country. In that role, I regularly engage with state Medicaid agencies and managed-care organizations across several states on issues related to access, quality, and cost of autism services.
What I am increasingly seeing is states relying on blunt instruments to control spending, primarily rate reductions and increasingly restrictive utilization management. While these approaches may generate short-term savings on paper, they often create unintended and counterproductive consequences. They do not differentiate between clinical complexity, risk, or progress, and they disproportionately impact providers serving higher-need populations.
In practice, this leads to workforce instability, reduced access to care, longer waitlists, and greater reliance on crisis services and emergency systems. Families experience disruption and uncertainty, and states ultimately absorb higher downstream costs when care becomes less effective or less available.
There is a more sustainable path forward. Instead of focusing narrowly on rate cuts or hour reductions, states can move toward models that incentivize outcomes and appropriate reductions in intensity and length of care over time. This requires standardized, risk-adjusted measures of progress, clear and defensible discharge criteria tied to functional outcomes, and payment structures that reward timely, durable improvement rather than volume alone.
Outcome-aligned approaches create better incentives for providers, greater transparency for families, and more predictable, responsible spending for states. The goal should not be simply to reduce utilization, but to reduce dependency through effective care.
— Timothy Yeager, Fresno, California
The Broader Risks of Body Sculpting
Kudos on an excellent, very important 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/sepsis and medication overdose, a person may die from fat embolus, in which a piece of fat tissue gains access to a blood vessel and is carried to the heart and lungs. As a pathologist, I’ve seen it (a young woman in her 20s).
People considering body sculpting should also be aware that fat tissue is less well-vascularized than, say, skin or muscle, and therefore is more susceptible to necrosis or infection.
— Gloria Kohut, Grand Rapids, Michigan
ACA Consumers Feel the Pain
The Government Accountability Office’s recent report on fraud in the ACA marketplace should be 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 been reporting to the Centers for Medicare & Medicaid Services for years — with little response.
It must also be acknowledged that Obamacare is broken. Premiums have risen sharply, plan options have narrowed, and affordability remains fragile for millions. Reform is clearly necessary, and reasonable people can debate how best to fix the system.
But consumers should not be punished for these failures — nor forced to absorb higher costs driven in part by CMS’ failure to enforce its own rules. Left unchecked, fraud distorts legitimate enrollment figures, inflates associated program costs, and obscures the true financial performance of the marketplace. The cost of that deception is not borne by fraudsters but ultimately paid by everyday Americans just trying to keep 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, agent National Producer Numbers, timelines, and consumer statements. They identify specific brokers, agencies, dates, and methods of abuse. Yet to our knowledge, CMS has not taken decisive enforcement action against even the most egregious offenders across multiple enrollment cycles. In most cases, CMS has not requested additional documentation at all.
The misconduct is neither isolated nor subtle. We have documented unauthorized agent-of-record changes, fabricated special enrollment periods, and impersonation — brokers posing as consumers to override existing coverage. Often fraudsters abuse the Enhanced Direct Enrollment links, including those powered by platforms such as HealthSherpa, where enrollment pathways are misused to obscure consumer intent, override trusted agents, or facilitate unauthorized enrollments. In some cases, recordings capture consumers explicitly stating they do not want to change plans, only to be enrolled anyway.
Consumers pay the price. Many discover that their coverage has been altered without consent, that their doctors are suddenly out-of-network, or that their premiums have increased. 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. Systems fail when oversight is weak and enforcement is optional. CMS’ inaction has sent a clear message: 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
Unfortunately, we learned the hard way that long-term care facilities (nursing homes) saw an opportunity pre-covid to hire a couple of physical therapists and transition a room into a “rehabilitation center” and suddenly become certified LTC/rehab centers (“Broken Rehab: They Need a Ventilator To Stay Alive. Getting One Can Be a Nightmare,” Dec. 2). They could advertise as such to doctors and area hospitals, and they took in a new population of patients. Upon discharge from a hospital, many patients benefit from going to an inpatient rehab facility for a couple of weeks to perhaps a month. Insurance companies decide how long they will pay.
Before the covid pandemic, the LTC facilities had separate wings and rooms just for rehabilitation patients, and they were worked with every day, except weekends, by physical therapists. But then came covid, and the overall attendance of rehab patients went down, so many nursing homes had to close the rehab wings.
But the LTCs still needed the extra revenue, so they just put the rehab patients in with the regular nursing home patients. You can imagine where that went, for not only the patients but the staff. Everyone was a “nursing home patient,” and they were treated as such, especially by the staff.
If you’re a nurse who is used to caring for LTC patients, there’s nothing that is ever “in a hurry.” You schedule activities in with the other time or two you see each LTC patient. Oftentimes, rehab patients are a whole different patient with different, more frequent needs and more frequent medications.
You see the case managers that most hospitals employ to keep the assembly line moving, getting patients in one door and then out the exit door as fast as possible. You have to remember, insurance companies are only going to pay for that hospital patient to be cared for in the hospital for so long. Then the case managers swoop in, have a talk with the attending doctor and everyone (except the patient and family), and agree on a discharge date.
Now comes the list. This is a list that the hospital and the LTC/rehab centers agree on. The family and patient are told nothing about one facility over another. You just better have a facility picked out by the discharge date, or the case managers will do it for you.
So your loved one who needs only physical therapy is off to be most likely mixed in with the regular long-term care patients. And you had better be there every day to watch for your loved one. Twice out of three LTC/rehab visits my wife had, I stepped in and fought with the head of the facility to call the ambulance, because my wife was going downhill, medically, and they didn’t notice it because they weren’t used to noticing when non-LTC patients develop other medical problems, because often the case managers insist on discharging a rehab patient too soon, before they are stable. You need to find a facility that takes care of only rehabilitation patients and is licensed as such.
— Stephen Cripe, Monticello, Indiana
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