Medicaid Reimbursement Rates

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Morgan Gonzales at Behavioral Health Business:

Medicaid reimbursement rates are largely trending upward for autism therapy providers, but burdensome regulations still pose significant hurdles to growth.

To overcome these challenges and improve rates, all players in the autism therapy industry, including private equity firms, must become involved in advocacy work, industry insiders said at the Behavioral Health Business Autism & Addiction Treatment Forum.

“No margin, no mission,” Darren Patz, partner of government affairs and public policy at international law firm DLA Piper, said at the event. “You get the rates, and everything can flow from that.”


Medicaid reimbursement for services performed by registered behavior technicians (RBTs) and board-certified behavior analysts (BCBAs) is relatively new, according to Patz, so states are still in the process of determining rates.
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Private equity-backed ABA providers must also join advocacy efforts, Patz said. Group advocacy work also provides a platform for providers to share best practices, he added.

Private equity has played an increasingly prominent role in autism therapy dealmaking. Private equity firms completed 85% of all M&A between 2017 and 2022, according to research. The federal government has also increasingly scrutinized private equity activity in behavioral health, launching a probe into private equity’s role in health care in March.

Autism CARES Reauthorization

 In The Politics of Autism, I discuss the congressional role in the issue.

 From the Autism Society:

Background:

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, first enacted in 2006 and signed into law by President George W. Bush, represents a landmark in coordinated federal efforts to address the increasing prevalence of Autism. With the Centers for Disease Control and Prevention (CDC) now reporting that approximately 1 in 36 kids are diagnosed with Autism and 4.5 million adults in America have Autism, the need for a comprehensive approach to Autism has never been more critical. The Autism CARES Act has established crucial programs and committees, including the Interagency Autism Coordinating Committee (IACC) and various initiatives across the Department of Health and Human Services (HHS), aimed at enhancing our understanding and management of Autism.

See our blog to learn more about how this law impacts families and those with Autism.

Issues:

Despite significant advancements in Autism research and services, the rising diagnosis rates underscore the ongoing urgency to bolster federal response. The Autism CARES Act, reauthorized last in 2019, faces a sunset deadline of September 30th, 2024. Without timely reauthorization, the future of these essential programs and the progress they represent is at risk.

Members of Congress must act swiftly to reauthorize and enhance the Autism CARES Act. The continuation and expansion of these programs are not just a matter of policy but a necessity for the countless individuals and families affected by Autism. Together, we can ensure a future where every person with Autism has the opportunity to lead a fulfilling and supported life.


Your Voice Matters:

The House Energy and Commerce Committee unanimously approved the bill on June 12th. The Senate HELP Committee also passed the Autism CARES Act out of committee on a vote of 20-1 on July 31st. The bills will next be considered on the House and Senate floors, likely in early September. Please use this Action Alert to easily message your Members of Congress asking for their support. Your advocacy can make a difference in the lives of millions.

*The template letters are based on your address. Please enter your address to finish sending the Action Alert.*

Estimate of ASD Prevalence

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence.

BRIEF RESEARCH REPORT article
Front. Psychiatry
Sec. Autism
Volume 15 - 2024 | doi: 10.3389/fpsyt.2024.1471969

Prevalence and trends of autism spectrum disorder and other developmental disabilities among children and adolescents in the United States from 2019 to 2021 Provisionally accepted

 Wen-Rong Ge Cancan Zhang Guang Yang Bo Zhang 

The National Health Interview Survey (NHIS) is a comprehensive health survey conducted by the National Center for Health Statistics (NCHS) in the U.S., providing valuable insights into the health status of the population. This study focuses on the NHIS child survey between 2019 and 2021, exploring developmental disabilities in U.S. children, including autism spectrum disorder (ASD), attention deficit/hyperactivity disorder or attention-deficit disorder (ADHD/ADD), intellectual disability (ID), other developmental delay (other DD), and learning disability (LD).Objective: Leveraging NHIS data, our primary objective is to investigate the latest trends and disparities in the prevalence of developmental disabilities among various racial-ethnic groups.Methods: Employing a repeated cross-sectional design, we analyzed NHIS data from 2019 to 2021, focusing on children aged 3-17. The survey employed a meticulous stratified multi-stage sampling design. We utilized SAS version 9.4 for data analysis, calculating race-ethnicity-specific prevalence rates and employing weighted linear regression and the Rao-Scott chi-square test for trend analysis.Results: Among 19,490 children, prevalence rates varied: ASD (3.11%), ADHD/ADD (9.50%), ID (1.85%), other DD (5.66%), and LD (7.49%). Non-Hispanic black children exhibited higher rates of ID and LD, while non-Hispanic white children had the highest ADHD/ADD prevalence. Disparities persisted across sociodemographic subgroups, with variations in prevalence rates.Our study reveals an increase in ASD prevalence and persistent disparities among racial-ethnic groups.Non-Hispanic black children face elevated risks of ID and LD, while non-Hispanic white children exhibit higher rates of ADHD/ADD.

More on Fred Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns. In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism. He also has a bad record on disability issues more generally. .  He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

At The Independent, Sheila Flynn talks to Fred Trump:

“How could one human being say that about another human being, least of all his grand-nephew?” an incredulous Fred asks The Independent. “ I don’t know where that cruelty comes from, that deep, horrible cruelty … forget about William being my son, he was their brother’s grandson.”

Trump, in a typical statement highlighting his contributions to William’s fund, literally used the words “this is the thanks I get” after Fred went public. His son Eric also defended him.

“They never disputed that he said that, by the way,” Fred tells The Independent.

He’s made peace with sacrificing any future salvaging of their relationships if it means he can shine a spotlight on the needs of the disabled: better training for medical staff, better housing options, better pay for caregivers whose compensation, he writes, is too often “demeaning.”

“I have a national platform,” Fred says. “And I don’t mean to call people with disabilities the underdog, but, in many cases … these are people that are voiceless.

“There’s nobody out there just shouting from the rooftops, if you will, saying this needs to be done.”

He’s hopeful that Trump’s attitude towards the disabled – including those within his own family – might reveal his alleged true colors for some voters, though he’s fully aware of Trump’s inexplicably teflon history.

MERT

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

Corinne Purtill at LAT:

Like many families with children on the autism spectrum, Jake’s parents sought treatments beyond traditional speech and behavioral therapies.

One that seemed promising was magnetic e-resonance therapy, or MERT, a magnetic brain stimulation therapy trademarked in 2016 by a Newport Beach-based company called Wave Neuroscience.

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MERT is Wave’s trademarked version of a therapy called transcranial magnetic stimulation. The product of decades of research, TMS is approved by the FDA to treat major depression, obsessive-compulsive disorder and cigarette addiction.
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Multiple researchers are currently examining whether TMS could improve certain symptoms of autism. But eight researchers interviewed for this article said there isn’t yet enough evidence to recommend TMS as an autism therapy, or to say with confidence that it works for that condition.

Lindsay Oberman, director of the Neurostimulation Research Program at the National Institute of Mental Health, published a paper last year summarizing the current state of research on TMS and autistic children. Nearly all published studies on the treatment to date have been very small, open-label (meaning both patients and providers knew what treatment they were receiving) or focused on a very specific subgroup, she and her co-authors wrote.

Without large, randomized controlled trials — the gold standard in medicine — “broad off-label use of these techniques in this population is not supported by currently available evidence,” the paper concluded,

Waiting in Texas

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

Faith Braverman at KPRC-TV:

The Handley family proposed a bill in the last Texas legislative session that would require school districts to refer students with disabilities to their Local Intellectual and Developmental Disability Authority (LIDDA) the moment they are diagnosed.

Doing so would ensure families are notified about Medicaid Waiver Programs and the services and support available to special needs families at the time of a child’s diagnosis, and for more waiver slots to open up so families can get the help they need.

Carey Nelson Handley and her husband Boyd said they were not aware of the lists until their daughter Caytlin was 14-years-old. She is still waiting for services at age 30.

“We want families to be knowledgeable about what services and supports are available to their children with special needs as they go through life. The Handley bill was started because we have actually been on what’s called the Medicaid waiver Interest Lists for 16 and a half years,” Handley said.

Medicaid home and community-based services (HCBS) provide opportunities for people to receive cost-effective, long-term services and supports in their own home, rather than in an institutional setting, allowing them to live and work in their community.

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Most of these programs have a 15 to 20 year waiting list, and the Handley family have been working with non-profit group The Arc of Texas to address this issue.

According to the Kaiser Family Foundation, Texas is one of six states that don’t pre-qualify people before adding them to the lists, which causes a huge disparity in the waiting times for services.

Handley believes there’s a push for institutionalization in Texas, rather than supporting families who choose to keep their loved ones at home.

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The Handley Law Office is dedicated to making sure other special needs families have the resources to know what they legally need to do to take care of their loved ones, now and in the future. This dedication was taken all the way to the Texas State Capitol building, where the Handley’s testified for House Bill 4716, also known as “the Handley bill.”

SEARCH WATER FIRST: Autism and Drowning

The Politics of Autism discusses the dangers facing autistic people, including wandering.

 Patricia Davis at the National Center for Missing and Exploited Children

There’s been a dramatic spike in drownings of children with autism this summer, with three more kids drowning just this week, raising the total to 26 children.

“It’s been the worst summer on record for autism and wandering in terms of fatalities,” said Lori Mcllwain, co-founder of the National Autism Association (NAA), whose son has autism. “We’re trying to get the word out to parents to be extra vigilant. We usually see two or three deaths per month on average. Now we’re seeing two or three a week.”

Today, in conjunction with NAA, the National Center for Missing & Exploited Children (NCMEC), is releasing an urgent alert to remind the public and first responders to SEARCH WATER FIRST when a child with autism is missing. Children with autism often wander, or bolt, from safe environments and many are drawn to water.

John Bischoff, who oversees our Missing Children Division, said NCMEC knew we had to do something more when we saw this shocking increase.

“We want to urge people to be more vigilant,” Bischoff said. “It’s important that everyone understands what to do in these fast-moving situations, not just the families of these children. You could save a life.”

 Michael Cuglietta, Orlando Sentinel:

Children with autism are especially susceptible to the risk of drowning, as they tend both to wander away and to be attracted to water, experts say. That has led advocates to push for specialized swim lessons attuned to those kids’ situations, but much more needs to be done.

So far this year, 23 children with autism have died by drowning in Florida, including six in Central Florida, according to the Florida Department of Children and Families. Those deaths account for nearly 30% of the 81 such deaths reported in 2024 in Florida, which leads the nation in childhood drowning.

 

Justice Jackson's Daughter

In The Politics of Autism, I write about the everyday struggles facing autistic people. 

At CNN, John Fritze and Lauren del Valle report on a new memoir by Justice Ketanji Brown Jackson:

Jackson writes at length about her older daughter, Talia, who is academically gifted but who sometimes struggled with social interactions and transitions at school. After years of navigating what Jackson describes as “outright trauma,” her daughter was diagnosed with autism.

“There is no use in pretending that we weren’t completely devastated by the long-overdue confirmation of what I had suspected all along: that our older child was on the autism spectrum,” Jackson writes. At the same time, Jackson described the news as something of a relief.

“We could end our denial,” she writes.

“As Talia learned to advocate for herself through the years, she would educate us about how she was not ‘a person with autism’ but, rather, was autistic – by which she meant that her autism was an identity as much as her being Black and female,” Jackson writes. “Autism was another lens through which she engaged the world, with full awareness of her strengths and mindful of her trials.”

The Subminimum Wage Is Problematic

In The Politics of Autism, I discuss the employment of people on the autism spectrum

The subminimum wage is a good example of policy failure. Amanda Morris, Caitlin Gilbert and Jacqueline Alemany at WP:

• Federal rules state that 14(c) employers must help disabled workers move on to higher-paying jobs, but many never leave the program. In 2022, just 0.5 percent of 14(c) workers were referred by their employers to vocational rehabilitation services, the main pathway for them to leave the program, according to data from the Rehabilitation Services Administration for 35 state agencies.
• When states have ended 14(c) subminimum wage programs, overall employment of adults with cognitive disabilities has increased. A Post analysis of eight states that ended their programs before 2022 showed that employment rates for adults with cognitive disabilities increased by at least 14 percent after state programs were canceled, when adjusted for overall employment rate growth.
• About one in three current 14(c) employers have failed to correctly pay wages, but that is probably an undercount because few are investigated each year. Between October 2009 and September 2023, the Labor Department ordered employers to pay $20.2 million in back wages for pay and other violations.

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Oversight of different aspects of the 14(c) program is fragmented between four federal agencies — the departments of Labor, Education, Justice, and Health and Human Services. However, no federal agency is in charge of making sure individuals move from 14(c) programs into community employment. A stream of government reports over three decades have called for additional oversight of the program or ending it entirely. In a 2020 report, the U.S. Commission on Civil Rights wrote that the 14(c) system was “rife with abuse,” with respect to wages, and found that workers were not getting the support they needed to move on into community jobs.

A 2023 report from the Government Accountability Office surveyed wage data from 2019 to 2021 and found that workers were typically making about $3.50 per hour, compared with a federal minimum wage of $7.25. About 12 percent made hourly wages of less than a dollar

Only about 2 percent of workers fully transitioned out of 14(c) jobs into a competitive, integrated job, according to August 2021 data from the same agency.

Back-to-School Measles

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

CDC:

As of August 29, 2024, a total of 236 measles cases were reported by 29 jurisdictions: Arizona, California, District of Columbia, Florida, Georgia, Idaho, Illinois, Indiana, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Missouri, New Hampshire, New Jersey, New Mexico, New York City, New York State, Ohio, Oklahoma, Oregon, Pennsylvania, South Dakota, Vermont, Virginia, Washington, Wisconsin and West Virginia.

There have been 13 outbreaks (defined as 3 or more related cases) reported in 2024, and 69% of cases (163 of 236) are outbreak-associated. For comparison, 4 outbreaks were reported during 2023 and 49% of cases (29 of 59) were outbreak-associated.

 Sheila Mulrooney Eldred at Minnesota Public Radio:

A measles outbreak that began in May in Minnesota has spread to 30 people, primarily infecting children in the Somali community. One dugsi, or Islamic religious school, has voluntarily closed in order to curtail the spread, according to the Minnesota Department of Health.

About a third of the patients have required hospitalization, a state spokesperson said. All but one were unvaccinated.

The outbreak brings the state to 36 measles cases this year.

Measles is endemic in many countries, including African countries that Minnesota’s Somali families visit in the summer months. Seven people contracted the respiratory virus from travel, state health officials said.

“So when people who didn’t vaccinate and then travel outside of the country where measles is still existing, they contract it and then it spreads here because we have a close-knit community with big families,” said Sheikh Yusuf Abdulle, executive director of Islamic Association of North America. He has requested that people attending this weekend’s annual convention consider their vaccination status before attending.

“We’re concerned because 36 is a big number,” said Sheyanga Beecher, a certified nurse practitioner in pediatrics at HCMC and medical director of Hennepin Healthcare Mobile Health. “And, school’s around the corner. It’s been spreading a lot in child care centers, areas where people congregate. And next week kids are going to be congregating on buses, in classrooms, in hallways … so it has the potential to increase.”

Meira Gebel and Tina Reed at Axios Portland:

Oregon's recent measles outbreak — one of the largest in the state's history — is refocusing attention on declining childhood vaccination rates as kids head back to school.

Why it matters: Oregon has one of the highest vaccine exemption rates for kindergartners in the country, according to the Centers for Disease Control and Prevention.Studies have found an increased risk of infection from vaccine-preventable diseases, such as measles, which is potentially fatal, among exempt children.

Threat level: There have been 30 confirmed cases of measles in Oregon as of Wednesday, all among unvaccinated individuals. A dozen of those cases are in children under age 10.

Sarah Boden at Spotlight PA:

Preventing the resurgence of measles and other childhood illnesses, like polio, requires nearly universal vaccinations, which isn’t the case in Pennsylvania. During the 2019-2020 school year, the kindergarten vaccination rate for measles was 96.4%, according to data analyzed by the state Department of Health. In 2022-2023, that rate dropped to 94%. If the number of unvaccinated kids creeps further upward, Pennsylvania could face a public health crisis that is entirely avoidable.

 

A Job for RFK?

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He recently ran for president as an independent and has now endorsed Trump.

Alejandra O’Connell-Domenech at The Hill:

Health experts are worried about Robert F. Kennedy Jr. could influence former President Trump’s public health policies in a second term, after the prominent anti-vaccine advocate suspended his independent campaign for president and jumped aboard Trump’s.

Upon announcing the move last week, Kennedy said Trump had “asked to enlist me in his administration.” Kennedy’s former running mate, Nicole Shanahan, said earlier this month Kennedy would do an “incredible job” as secretary of health and human services.

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Trump’s son, Donald Trump Jr., told conservative radio host Glenn Beck this month he would support Kennedy taking over a government agency to “blow it up.”

And this is exactly what many health experts fear would happen to a public health agency — like the Centers for Disease Control and Prevention or the National Institutes of Health — with Kennedy at the helm.

“From a health perspective this would be nothing short of chaos,” said Robert Murphy, a professor of infectious disease at Northwestern University Feinberg School of Medicine.

“He’s proven himself to be a dangerous fanatic who doesn’t have a science background and who doesn’t believe in science.”

“We’re in a lot of trouble if he has any role, any leadership position related to many things, but health in particular,” he added.

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“The notion that RFK Jr. would have any say in who’s selected [to be part of Trump’s administration] is very worrisome to me and many of my colleagues in public health,” W. Ian Lipkin, the director of the Center for Infection and Immunity at Columbia University Mailman School of Public Health, told The Hill.

“Many of us are old enough to remember what happened before there was a polio vaccine or a measles vaccine…there were millions of children that were adversely impacted due to the lack of protection from these types of diseases,” said Lipkin.

The Spectrum Act

In The Politics of Autism, I discuss gender differences in autism identification.

Joseph Choi at The Hill:

Rep. Ro Khanna (D-Calif.) introduced a bill [HR 9436] Friday aimed at addressing the underdiagnosis and late diagnosis of autism in women and girls.

Along with GOP Reps. Claudia Tenney (N.Y.) and Brian Fitzpatrick (Pa.), Khanna introduced the Spectrum Act, which would authorize the director of the National Science Foundation to award grants for research into how autism is approached when it comes to women and girls.

Male patients are diagnosed with autism at a rate four times higher than their female counterparts. In recent years, there has been a growing consensus that female patients go undiagnosed or are diagnosed with autism later in life due to differences in how it presents in comparison to male patients.

Girls may be more likely to “mask” the signs of autism, or adults in their life may be more likely to overlook symptoms.

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The Spectrum Act would provide funding for research into “masking” in women and girls as well as the “double empathy problem” theory first proposed by British autism researcher Damian Milton.

His theory argues against the notion that autistic people have less empathy, and instead proposes people with autism and nonautistic people lack mutual understanding of each others’ experiences, making it difficult for them to empathize with each other.

Emma Preston, a senior policy adviser for Khanna, said her own “lived experiences” informed her pushing the lawmaker to look into the issue.

“I had asked him if we could pursue it last year; at the time, I was trying to better understand my own lived experiences and whether they fell under the umbrella of neurodivergence. I quickly realized that the existing research focused almost exclusively on boys, with hardly any variation in gender, race, or income,” Preston said.

Steve Silberman, RIP

In The Politics of Autism, I write about the everyday struggles facing autistic people. Steve Silberman chronicled those struggles 

Steve Silberman at Scientific American:

A recent study by Rutgers University’s Annabelle Mournet and colleagues concluded that autistic people may be even more powerfully motivated to seek out friendships and community than nonautistic people. These desires are often frustrated by widespread misconceptions about autism, particularly the assumption that people on the spectrum aren’t interested in seeking comfort and support in the company of others. “Autistic adults cannot be assumed to have fewer social connections—or less desire to have social connections,” Mournet wrote in Spectrum. “Our field must work to dismantle these damaging and inaccurate notions.” Dismantling these false notions matters urgently, Mournet points out, because autistic adults are at high risk for suicide, and having a network of supportive connections protects against suicidal ideation.

The tendency of neurotypicals to stigmatize autistic behavior as weird and off-putting also hampers the formation of relationships. This process unfolds subconsciously—even in the first few seconds of interaction, observes Noah Sasson, a psychology professor at the University of Texas at Dallas whose work is deeply informed by the insights of autistic colleagues like Monique Botha. By conducting a study of neurotypicals’ first impressions of autistic people (known in psychology as “thin-slice judgments”), Sasson and his colleagues determined that negative reactions to autistic adults’ atypical body language, facial expressions, tone of voice and frequency of eye contact lead neurotypicals to be less inclined to pursue further interactions. These thin-slice judgments pervasively harm autistic adults’ attempts to find employment, build networks of support and navigate the social landscape in ways that lead to happy, secure and successful lives.

From the Autistic Self Advocacy Network:

The Autistic Self Advocacy Network mourns the passing of Steve Silberman, author of NeuroTribes and a longtime friend of ASAN and the neurodiversity movement.

In the writing of NeuroTribes, Steve brought to bear his formidable skills as a writer to tell the story of autism history in ways that few in the public had then been aware of. His book played a groundbreaking role in changing the public conversation on autism, elevating the concept of neurodiversity and the voices of autistic people into the mainstream. In writing NeuroTribes, Steve embedded himself in the autistic community, attending Autreat and other community gatherings as well as participating wholeheartedly in both online and offline autistic culture spaces.

He also traveled the world to understand the hidden history of autism over the years, uncovering crucial information on the early history of the diagnosis that had not previously been brought to light. In sharing these stories with his exceptional literary ability, Steve’s work educated the public about the autistic self-advocacy and neurodiversity movements and helped to empower ASAN’s advocacy work.

Though not autistic himself, Steve worked hard to bring autistic people into the conversation, contributing to our shared effort to build a world in which autistic people can enjoy full equality, inclusion and dignity. We are grateful to him for his years of work as a part of our movement and shared community.

Steve is survived by his husband and sister. ASAN extends our condolences to them and joins them in mourning this tremendous loss.

Matthew Rozsa at Salon:

Steve Silberman was one of the greatest writers to ever put pen to paper about the subject of neurodiversity. Yet Silberman was not autistic; I learned this because, on the one occasion we had a conversation that made it to print, I accidentally claimed he was.

I erroneously believed that to be the case because, when Silberman wrote about neurodiversity for Wired, he wrote with a passion and authority that could not be denied. When Silberman explored the concerns of people who are neurologically different, he had the detailed knowledge of an expert — and the empathy of someone who has also walked the walk. This is why he is perhaps best known for authoring "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity," a 500-page classic that is part detailed historical narrative, part scathing sociological critique. With "NeuroTribes," Silberman traced how society has attempted to diagnose and treat autism, as well as by extension other neurodivergent conditions. Yet instead of centering the doctors, parents and other "normal" people, Silberman kept the neurodivergent people themselves as the focus of his work.