Letters to the Editor is a periodic characteristic. We welcome all comments and can publish a variety. We edit for size and readability and require full names.
KFF Health News acquired dozens of letters in response to an article final month describing how state funds shortfalls have led to cuts concentrating on therapies that many households of autistic individuals name important. Here is a sampling:
Autism Care: Pros and Cons
I’m writing to offer extra context and analysis to your article on state cuts to the autism remedy often known as utilized habits evaluation, or ABA (“It’s the ‘Gold Standard’ in Autism Care. Why Are States Reining It In?” Dec. 23).
While the piece targeted on caps or cuts in service hours being a dangerous factor, there have been recent studies showing that elevated hours of remedy don’t result in higher outcomes for autistic youngsters. While completely different households definitely have completely different wants that needs to be addressed individually with clinicians, and whereas some youngsters could wrestle with decreased intervention hours, it’s essential to notice that dire predictions about households shedding hours of providers aren’t borne out by analysis.
Another essential piece of context lacking from this text is that ABA is taken into account a controversial intervention amongst many within the autism neighborhood. While many households have constructive experiences, many different households and autistic adults strongly criticize ABA and have described widespread abuse and trauma from it. Newer research is starting to offer empirical affirmation for these reviews of trauma from ABA.
An article about ABA that leaves out this controversy isn’t a whole image. At a time when autism is on the nationwide stage and autistic individuals are routinely dehumanized by our leaders in authorities, it’s essential to consider how protection about autism is framed and whose voices are centered and included.
In tales about ABA, I consider it’s essential to incorporate autistic voices (resembling individuals who determine as ABA survivors, and autistic mother and father of autistic youngsters, who usually tend to keep away from, stop, or criticize ABA). It is accountable reporting to ask why ABA is broadly criticized by so many who’ve skilled the intervention, and why this criticism is exclusive to ABA and never seen with different autism interventions, resembling speech remedy and occupational remedy. Additionally, it’s important to research the ABA trade’s response to those critiques. (Has the trade collected knowledge or carried out analysis on what features of its previous or present interventions have precipitated hurt? Has it modified coaching or certification necessities for interventionists to deal with any “bad apples” amongst therapists? Has the trade engaged with abuse survivors or autistic-led organizations in making modifications to practices and insurance policies? Have safeguards been created and required in habits plans? Have insurance policies and moral pointers been up to date to deal with critiques from autistic adults?)
Ethics and safeguards, in addition to present analysis, surrounding an intervention for weak youngsters are a essential a part of any article about whether or not taxpayer cash is getting used responsibly for a controversial autism intervention.
— Kim-Loi Mergenthaler, Burlington, Vermont
I work with Behaven Kids, a regionally owned ABA remedy supplier serving households in Omaha, Nebraska. Thank you to your current article highlighting the affect of Medicaid ABA price cuts on Nebraska households and suppliers.
As an area supplier, we wished to supply extra context. Overutilization was cited within the article as a main driver of price reductions; a lot of that overuse in Nebraska was related to massive, out-of-state firms working with restricted long-term funding within the native workforce. Many of those organizations had entry to exterior funding or staffing pipelines, permitting them to soak up the cuts or exit the state altogether.
In distinction, Nebraska-based suppliers rely virtually completely on native clinicians and native funding streams. The speedy implementation of the speed cuts, with solely weeks for suppliers to regulate, has positioned a disproportionate pressure on organizations rooted in Nebraska which are dedicated to long-term look after households right here. In some circumstances, households skilled service disruptions or misplaced continuity of care as bigger suppliers scaled again or withdrew.
We consider there is a vital distinction to be explored between moral, needs-based service supply and the practices that contributed to overutilization issues. A extra focused coverage strategy, resembling improved supplier vetting or extra rigorous authorization requirements, might higher shield households whereas preserving entry to high-quality native care.
If not policymakers, then higher to tell households and pediatricians. Many individuals proceed to work with out-of-state suppliers with out understanding the moral use points or that their providers might be in danger as a result of ever-changing market and noncommittal firms.
— Whitney Reinmiller, Omaha, Nebraska
Why are states reining within the “gold standard” in autism care? Well, frankly, it’s not the gold commonplace.
As I wrote in one of my online publications, nations are spending billions on developmental incapacity interventions that too usually lack constancy, effectiveness, or accessibility. Meanwhile, tons of of kids and youth stay on lengthy waitlists, many in rural areas obtain no providers, and households with the highest-needs youngsters usually go with out assist.
Decades of analysis exhibits that the simplest and cost-efficient interventions happen when care is:
Delivered in pure environments and every day routines.
Inclusive of fogeys and pure caregivers.
Provided with constancy to evidence-based practices.
We should restructure the system to financially incentivize contextualized, parent-coached interventions and increase telehealth choices. Doing so will improve capability, enhance outcomes, and scale back long-term prices to Medicaid, colleges, and corrections.
— CR “Pete” Petersen, Hagerman, Idaho
I function the chief medical officer for one of many largest suppliers of ABA remedy within the nation. In that position, I often interact with state Medicaid businesses and managed-care organizations throughout a number of states on points associated to entry, high quality, and price of autism providers.
What I’m more and more seeing is states counting on blunt devices to manage spending, primarily price reductions and more and more restrictive utilization administration. While these approaches could generate short-term financial savings on paper, they usually create unintended and counterproductive penalties. They don’t differentiate between medical complexity, danger, or progress, and so they disproportionately affect suppliers serving higher-need populations.
In observe, this results in workforce instability, decreased entry to care, longer waitlists, and higher reliance on disaster providers and emergency programs. Families expertise disruption and uncertainty, and states finally take in increased downstream prices when care turns into much less efficient or much less out there.
There is a extra sustainable path ahead. Instead of focusing narrowly on price cuts or hour reductions, states can transfer towards fashions that incentivize outcomes and acceptable reductions in depth and size of care over time. This requires standardized, risk-adjusted measures of progress, clear and defensible discharge standards tied to useful outcomes, and fee buildings that reward well timed, sturdy enchancment somewhat than quantity alone.
Outcome-aligned approaches create higher incentives for suppliers, higher transparency for households, and extra predictable, accountable spending for states. The objective shouldn’t be merely to cut back utilization, however to cut back dependency via efficient care.
— Timothy Yeager, Fresno, California
The Broader Risks of Body Sculpting
Kudos on a superb, crucial 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 drugs overdose, an individual could die from fats embolus, wherein a bit of fats tissue features entry to a blood vessel and is carried to the guts and lungs. As a pathologist, I’ve seen it (a younger lady in her 20s).
People contemplating physique sculpting also needs to bear in mind that fats tissue is much less well-vascularized than, say, pores and skin or muscle, and due to this fact is extra inclined to necrosis or an infection.
— Gloria Kohut, Grand Rapids, Michigan
ACA Consumers Feel the Pain
The Government Accountability Office’s current report on fraud within the ACA market needs to be a wake-up name (“Plan-Switching, Sign-Up Impersonations: Obamacare Enrollment Fraud Persists,” Dec. 10). For these of us working instantly with customers, it merely confirms what now we have been reporting to the Centers for Medicare & Medicaid Services for years — with little response.
It should even be acknowledged that Obamacare is damaged. Premiums have risen sharply, plan choices have narrowed, and affordability stays fragile for tens of millions. Reform is clearly obligatory, and cheap individuals can debate how finest to repair the system.
But customers shouldn’t be punished for these failures — nor compelled to soak up increased prices pushed partially by CMS’ failure to implement its personal guidelines. Left unchecked, fraud distorts legit enrollment figures, inflates related program prices, and obscures the true monetary efficiency of {the marketplace}. The price of that deception isn’t borne by fraudsters however finally paid by on a regular basis Americans simply attempting to maintain protection.
We have submitted intensive, evidence-backed complaints on behalf of affected customers documenting broker-driven fraud throughout the ACA market. These reviews embrace name recordings, enrollment knowledge, agent National Producer Numbers, timelines, and shopper statements. They determine particular brokers, businesses, dates, and strategies of abuse. Yet to our information, CMS has not taken decisive enforcement motion in opposition to even essentially the most egregious offenders throughout a number of enrollment cycles. In most circumstances, CMS has not requested extra documentation in any respect.
The misconduct is neither remoted nor refined. We have documented unauthorized agent-of-record modifications, fabricated particular enrollment intervals, and impersonation — brokers posing as customers to override present protection. Often fraudsters abuse the Enhanced Direct Enrollment hyperlinks, together with these powered by platforms resembling HealthSherpa, the place enrollment pathways are misused to obscure shopper intent, override trusted brokers, or facilitate unauthorized enrollments. In some circumstances, recordings seize customers explicitly stating they don’t wish to change plans, solely to be enrolled anyway.
Consumers pay the worth. Many uncover that their protection has been altered with out consent, that their medical doctors are all of a sudden out-of-network, or that their premiums have elevated. Others lose protection altogether when fraudulent enrollments collapse beneath verification opinions. Meanwhile, the brokers accountable usually proceed working beneath new company names, repeating the identical ways.
The GAO report confirms that ACA dealer fraud is systemic. Systems fail when oversight is weak and enforcement is non-compulsory. CMS’ inaction has despatched a transparent message: Documented fraud carries little danger with important monetary acquire. Predictably, abuse has expanded.
We can debate.
— Jason Fine, Fort Lauderdale, Florida
A Different Kind of Nursing Home Nightmare
Unfortunately, we discovered the laborious approach that long-term care amenities (nursing properties) noticed a chance pre-covid to rent a few bodily therapists and transition a room right into a “rehabilitation center” and all of a sudden turn out to be licensed LTC/rehab facilities (“Broken Rehab: They Need a Ventilator To Stay Alive. Getting One Can Be a Nightmare,” Dec. 2). They might promote as such to medical doctors and space hospitals, and so they took in a brand new inhabitants of sufferers. Upon discharge from a hospital, many sufferers profit from going to an inpatient rehab facility for a few weeks to maybe a month. Insurance firms resolve how lengthy they may pay.
Before the covid pandemic, the LTC amenities had separate wings and rooms only for rehabilitation sufferers, and so they have been labored with day by day, besides weekends, by bodily therapists. But then got here covid, and the general attendance of rehab sufferers went down, so many nursing properties needed to shut the rehab wings.
But the LTCs nonetheless wanted the additional income, so they only put the rehab sufferers in with the common nursing residence sufferers. You can think about the place that went, for not solely the sufferers however the employees. Everyone was a “nursing home patient,” and so they have been handled as such, particularly by the employees.
If you’re a nurse who’s used to caring for LTC sufferers, there’s nothing that’s ever “in a hurry.” You schedule actions in with the opposite time or two you see every LTC affected person. Oftentimes, rehab sufferers are a complete completely different affected person with completely different, extra frequent wants and extra frequent drugs.
You see the case managers that almost all hospitals make use of to maintain the meeting line transferring, getting sufferers in a single door after which out the exit door as quick as potential. You have to recollect, insurance coverage firms are solely going to pay for that hospital affected person to be cared for within the hospital for thus lengthy. Then the case managers swoop in, have a chat with the attending physician and everybody (besides the affected person and household), and agree on a discharge date.
Now comes the checklist. This is an inventory that the hospital and the LTC/rehab facilities agree on. The household and affected person are instructed nothing about one facility over one other. You simply higher have a facility picked out by the discharge date, or the case managers will do it for you.
So your beloved who wants solely bodily remedy is off to be probably blended in with the common long-term care sufferers. And you had higher be there day by day to look at for your beloved. Twice out of three LTC/rehab visits my spouse had, I stepped in and fought with the top of the power to name the ambulance, as a result of my spouse was going downhill, medically, and so they didn’t discover it as a result of they weren’t used to noticing when non-LTC sufferers develop different medical issues, as a result of usually the case managers insist on discharging a rehab affected person too quickly, earlier than they’re secure. You have to discover a facility that takes care of solely rehabilitation sufferers and is licensed as such.
— Stephen Cripe, Monticello, Indiana
