Blog – Page 2 – Ronit Molko, Ph.D., BCBA-D | Investment Consultant

Emotional wellness has become the elephant in the room in our schools today, as young people struggle like never before with their mental health.

A student at Long Beach State University in California called a friend in an emotional crisis, desperate for help and threatening to harm herself. The friend knew she had to act and in the absence of any on-campus crisis response strategy, she called campus security. To her shock, she discovered she had made the problem worse.

So goes the story told to Ashley Smith, a reporter for EdSource, an online publication highlighting strategies for student success.

After the call, armed police showed up at the student’s dorm room and dragged her off to a hospital psychiatric unit. At the time, the university lacked a comprehensive mental health response plan.

On-Campus Response Strategies Are Necessary

Following this incident, campus leaders recognized that mental health crises require a much more nuanced and humane response. Campus leaders devised a whole new strategy for student mental health. Implementation of this first-in-the-nation mental health strategic plan began last spring and will phase in its 60 action items over the next three years. Chief among them is a mobile crisis unit that responds to mental health emergencies with mental health professionals, not police.

Mental health has been a growing concern on campuses since 2013, according to a 2021 survey by the Association for University and College Counseling Center Directors. Ninety-five percent of the college counseling center directors said the number of students with significant psychological problems was increasing. First appointment visits at The University of Florida’s mental health clinic more than doubled between 2019 and 2020, and then increased again in 2021.

A Growing Crisis in Children’s Mental Health

The situation is similar for younger children. The Children’s Hospital Association reports that their member institutions recorded a nearly 38% increase in emergency department visits for mental health cases in the third quarter of 2021. They also reported nearly 54% more suicide and self-injury cases compared to 2020.

Though shocking, these numbers are not all that surprising. A pandemic that upended life for two years, mass shootings, racial tension, and angry political divisions have exacerbated the usual pressures that young people face. This is especially true for young people that are most susceptible to depression, eating disorders and other mental health issues. The rising mental health crisis among students has led to a bill presented to the California State Assembly, mandating that all public colleges in the state print a 24-hour hotline number on student identification cards for local mental health services.

There are many ways clinicians are responding to what many are calling a crisis. The Child Mind Institute this spring responded by embarking on a public awareness campaign anchored by the musician Pink, in which celebrities and ordinary people recount their stories of emotional struggle.

How Can Schools Work With Mental Health Providers?

Because students spend more time during the week in school than with their parents, school psychologists, counselors and social workers are crucial to maintaining students’ emotional health. School staff are often the first to identify changes in student affect or behavior. School psychologists and other behavioral health professionals in the schools can hone the screening process by developing strong relationships with teachers, staff and parents. Identifying children with issues early can prevent mental health crises.It is important for schools to have a plan in place to connect students to support services, whether in-school or in the community.

The Colorado Department of Education advises school districts to bring mental health professionals into the schools. “Utilizing mental health crisis teams can provide targeted and intensive mental health supports to students who require significant levels of support. These teams should include professionals, caregivers, community partners and stakeholders who understand robust approaches to mental health crisis management,” the department says on its website.

Mental healthcare providers have an unprecedented opportunity to connect with in-school and out-of-school communities to address student mental health, now that schools and their surrounding communities are more amenable to that service than ever. There is so much these providers can offer.

The Power of Telehealth to Expand Access

First, COVID has taught us the power of remote health services. Clinicians of all kinds can utilize telehealth to increase patient access to mental health services and minimize the stigma involved in seeking help by eliminating the public waiting room. Further, telehealth allows patients to receive care in the comforting surroundings and convenience of their own homes. Dropping the barriers to attending sessions boosts the likelihood of patient compliance and perseverance.

Patients have demonstrated a preference for telehealth services. The utilization of virtual appointments for mental health has hardly dropped off since COVID isolation, even as primary and secondary care patients are largely back in their doctors’ offices.

Behavioral health providers can also expand patient access to mental health by co-locating with primary care providers to offer more comprehensive services in one place. Improved access has been shown to correlate with better outcomes.

Emotional wellness has become the elephant in the room in our schools today, as young people struggle like never before with their mental health. It is incumbent upon professionals in the field, school districts, and higher education institutions to make mental health services as accessible, available, convenient and comfortable to use as possible.

By:
Ronit Molko
Radicle Health Advisory Board, Ph.D., BCBA-D
Aug 1, 2022

RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

Just because someone is nonspeaking, does not mean they’re non-thinking. Around 25 to 30 percent of children with autism spectrum disorder are minimally verbal or do not speak at all. These individuals are referred to as nonverbal or nonspeaking, but even the term nonverbal is a bit of a misnomer. While nonspeaking individuals with autism may not speak words to communicate, many still understand words and even use written words to communicate.

Nonspeaking individuals with autism utilize a variety of augmentative and alternative communication (AAC) methods. These range from no-tech and low-tech options such as gestures, writing, drawing, spelling words, and pointing to photos or written words, to high-tech options like iPads or speech-generating devices.

There are several reasons that an individual with autism may have difficulty talking or holding conversation that are not related to intellectual disability. The disorder may have prevented the normal development of verbal communication skills. They may also have conditions such as apraxia of speech, which affects specific brain pathways, making it difficult for a person to actually formulate and speak the words they’re intending to say. Some may also have echolalia, which causes a person to repeat words over and over again.

While these conditions prevent many individuals from speaking, it does not mean they cannot learn, understand, or even communicate. There is a pervasive misunderstanding about this among the general population due to a lack of education. It is often wrongly assumed that anyone who has difficulty speaking is intellectually disabled.

This misconception can be particularly harmful when held by medical professionals. In the 1980s, as many as 69 percent of people with an autism diagnosis had a dual diagnosis of mental retardation, which would now be labeled intellectual disability. By 2014, that number had declined to just 30 percent, as researchers improved the diagnostic criteria for autism and a fuller picture of the disorder emerged.

Researchers are still working to try and improve diagnostics and better distinguish nonspeaking autism from intellectual disabilities. As Audrey Thurm, a child clinical psychologist at the National Institute of Mental Health in Bethesda, Maryland says: “We have to figure out who has only autism, who has only intellectual disability and, importantly, who has both intellectual disability and autism. That’s millions of people who could be better served by having an accurate distinction that would put them in the right group and get them the right services.”

It’s important to challenge the perception that those who do not speak cannot think. Not only do we risk failing to give them the proper supports and services, but we also undermine their individuality, ingenuity, creativity, and humanity by failing to see them as they truly are. Just because they are not talking does not mean they do not have much to tell us.

BY RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

If there is one enduring hallmark of the American experience, it’s the immense diversity found within our expansive borders. Most of the time, we perceive diversity via differences in skin color, language, clothing, places of worship, or even the foods people eat when gathered around the table with their families. There is, however, one major aspect of diversity that is often overlooked—one that comes as no surprise, considering it cannot be detected solely through visual means. I am, of course, referring to neurodiversity.

Coined in the late 1990s by sociologist Judy Singer—who is on the autism spectrum—neurodiversity is a viewpoint that characterizes brain differences among individuals as normal, rather than as a disability. This viewpoint reduces stigmas around learning and thinking differences, while calling attention to the ability of neurodivergent communities to benefit from multiple perspectives and make greater contributions to society. Central to the movement is a rejection of the idea that these unique individuals need to be cured or fixed. Instead, it’s held that people possessing different types of brains need to be embraced and provided support systems that allow them to participate and contribute as members of the community to the best of their ability.

Grounded in Science

Unsurprisingly, the foundations of this not so new movement are grounded firmly in science and empirical study. By leveraging MRI results from hundreds of individuals, researchers have been able to compare the brains of people diagnosed with learning differences to their counterparts. So far, studies have shown that the brains of neurodivergent individuals are, in fact, unique. For example, the part of the brain that maintains language processing works differently for people diagnosed with dyslexia. Additionally, the prefrontal cortex, which manages executive functioning and attention, develops much slower in children diagnosed with ADHD. In other words, these individuals are not necessarily operating with a learning deficit but rather possess brains that are literally wired differently.

A Neurodiverse Population

Whether a group of kids recently diagnosed with autism or adults still grappling with ADHD or dyslexia, the American neurodiverse population is quite substantial. According to a 2021 report from the Center for Disease Control and Prevention, one in every 44 children in the United States is diagnosed with some sort of autism spectrum disorder, and an estimated 5.4 million adults—or roughly 2.2 percent of the entire population—fall somewhere along the spectrum. Many people on the spectrum have contributed (or still do) to their communities every day, such as Albert Einstein, Anthony Hopkins, Henry Cavendish, Greta Thunberg, Jerry Seinfeld, and Elon Musk. They have been among the world’s highest achievers, impacting the arts, sciences, technological innovation, and activism.

In much the same way as the neurotypical population, the neurodivergent population is broad, diverse, and multidimensional. It’s crucial, then, for the public not only to embrace their different brethren but also to actively promote opportunities for them both in society and in the workplace at all abilities and levels.

Fortunately for society writ-large, corporate America is starting to take notice. A recent article published in the Harvard Business Review named neurodiversity as a bona fide “competitive advantage,” noting the unique and, often, incomparable output provided by atypical members of their workforce. Numerous companies, including Hewlett-Packard, Enterprise, Microsoft, SAP, and Ford, have recently begun to reform their HR practices in an effort to expand neurodiversity in their ranks by identifying, hiring, and empowering these unique individuals. The results, so far, have been outstanding, with managers noting legitimate “productivity gains, quality improvements, boosts in innovative capabilities, and broad increases in employee engagement.”

Diversity of all kinds, including neurodiversity, strengthens our daily institutions. Just as we are seeing a focus on diversity, equity, and inclusion (DEI) in employment and other areas of life and commerce, we must also remember that recognizing and celebrating differences, promoting justice and fairness, and ensuring true support and inclusion applies not only to people with observable differences but also to our neurodiverse populations. Not all cognitive differences are visible, and it’s crucial to keep in mind that there’s more than meets the eye when it comes to true diversity.

In another blog post, Dr. Molko explains the history and evolution of applied behavior analysis (ABA) therapy. Read the story.

Able-bodied people comprise the dominant culture in America; thus, our cultural understanding of “normal” is contextualized around the contours of able-bodied activities. We consider, for example, an autistic mind or a visual deficiency that enhances other senses to be a detriment. In truth, these traits are often different ways of perceiving, understanding, and interacting with the world.

For many of the 60+ million Americans who have some kind of disability, this is frustrating. Their experience is not centered, and so their needs are not understood by a society built around how the able-bodied navigate the world. Instead, they are left to puzzle out their days with pieces that don’t always fit together. This despite the fact that even minor accommodations like a well-placed ramp or a thoughtful, private breakout space might make all the difference in helping these people lead “normal” lives.

Website Accessibility for Everyone

Let’s take one example: In the hyper-competitive online world, one would think websites would be designed to be accessible to as many people as possible. Yet, the disabled too often find themselves unable to properly navigate many sites. Common sense, good business practice, and the Americans with Disabilities Act all demand inclusive access and a similar shopping and navigation experience, yet many organizations fail to provide it.

Daryn Harpaz, a website content accessibility guidelines compliance specialist and founder and CEO of Zenyth Group, LLC, believes it is good business to consider the needs of 15%-20% of the population, and also just plain decent. “We should be enabling our community from a social aspect to be integrated, inclusive,” he opined. “And I think that says a lot about where we need to move in the direction of disabilities in general.”

Ableism and Ableist Misconceptions

The persistent inability of the able-bodied to recognize that not everyone has the same physical or psychological experience of the world that they do is today known as ableism. Living in a world meticulously designed to accommodate your needs—and even your most indulgent wants—is privilege. And while the emergence of privilege in any system is, to a degree, inevitable, refusing to grapple with privilege and its implications is a choice. We must be attentive to eliminating assumptions that reflect an able-bodied view of the world that does not create space for everyone and their diverse needs.

People with disabilities tell me that ableist thinking includes a variety of knee-jerk assumptions and misconceptions, including this one: that people with disabilities have no autonomy and constantly need help, even if they don’t ask for it. It’s not true, but it does precede another issue: people with disabilities must constantly explain themselves, for example by detailing how they became disabled. While these things seem well-intentioned—”I just want to help” or “I’m just trying to understand your experience”—they often only serve to make the able-bodied more comfortable with people who by simply existing challenge their privilege.

It is also an ableist misconception that all disabilities are visible. This perpetuates stigmatization and mistreatment of people with mental illness or autism, which is, after all, no different from physical impairment except that it affects the brain. Taken together, these false ableist impressions accrue and become barriers to inclusion and equity for disabled people.

Hearing a Product of Ableism?

Deaf people view themselves as a culture, with its own cultural signs and signifiers, not as a group that needs to be fixed. Many deaf individuals have chosen not to undergo cochlear implant surgery, even with the prospect of being able to hear for the first time.

Their rationale has been based on a fear of losing the community that has nurtured them, combined with the attendant fear of not being fully part of the hearing world. (To be fair, many deaf individuals do choose to get cochlear implants and are thrilled to enjoy the miracle of birdsong, loved ones’ voices, and the rest of the world of sound.)

Many of those who make the decision not to have the surgery report backlash from relatives and friends who can hear, but not understand their perspective. That in and of itself helps explain their decision, they say. Individuals with disabilities often want, more than anything, to be recognized as complete humans, irrespective of their disability. In other words, to be considered “normal” just the way they are.

Oliver Sachs, the world famous neurologist and best-selling author, recounted the story in his book The Man Who Mistook His Wife for a Hat, of a man who led a full life as a blind person until doctors discovered that they could cure his blindness. His transition to sight was arduous and traumatic, and turned him into a miserable sighted person. While his doctor and sighted wife persisted in their effort to complete his transition to a sighted person, he eventually took back his cane and returned to his contented life without vision.

Similarly, Shona Davison, writing on the Autistic UK website, put it this way, “Often the kindest, most caring people believe the way to help us, is to help us become more ‘normal’. This is what happens when one takes a medical model approach to autism – when one considers autistic people to be broken, disordered, or ill.”

While the challenges and needs of disabled people are as varied as the individuals, those of us who benefit most from society’s current structure have a duty to expand the scope of those benefits and create a more inclusive world for all. Our perception of “normal” needs to shift from a binary consideration to one that is mindful of the diverse ways individuals can—and do—perceive and navigate the world. Issues of accessibility, both in physical spaces and online, need a critical examination and modern update to accommodate millions of disabled individuals who are currently marginalized by streets, buildings, and websites designed for the able-bodied and able-minded. We need to be ever-aware and ever-curious about the insidious nature of ableism, recognize it when we see it, and correct it however we can. And ultimately, the abled need to set aside their own misconceptions and personal hang-ups in order to appreciate that disabled individuals have the agency to define their own cultures and conceptions of normal.

Trying to solve these problems is a huge undertaking that might seem impossible. However, we must try. Even though no one can transform our ingrained societal norms overnight, change is possible if the able-bodied take the time to listen, empathize, and regard every disabled individual as a complex person trying like everyone else to fit in and build a life of their own. If we are going to start somewhere, let’s start by making that mindset “normal”.

A patient desperate for pain relief opts for spinal fusion surgery, a procedure that typically costs between $80,000 and $150,000. Spinal fusion can offer benefits to healthcare patients but it has a woeful success rate often tabbed at 50%. We know that three of every seven patients who undergo the operation require further surgical intervention or experience disability, opiate use, and prolonged work loss, as well as low return-to-work status.

Yet patients are charged the same fee whether they are wholly cured or can’t walk following the procedure. The disconnect between healthcare costs and health care outcomes has sparked a growing movement to price healthcare based on the results.

This is called Value-Based Healthcare.

In a nation whose healthcare costs exceed other similar countries’ per capita expenditures by whole number multiples, while producing inferior results, the United States may have the most to gain from this movement. Value-based healthcare, by definition, puts more emphasis on prevention, and on the treatment of chronic health issues, and places the patient at the center of the treatment regimen.

How Value-Based Healthcare Works

Dr. Christina Akerman, a professor of medicine at the University of Texas’s Dell Medical School, offers an example of value-based healthcare at work. She mentions a clinic in Germany that changed its treatment of localized prostate cancer to focus on incontinence and sexual performance, rather than simply on survival. This change was the result of asking patients what most concerned them about their treatment.

“Outcomes are the actual results of care, which does include clinical measures such as survival rates and the complications during treatments,” Dr. Ackerman said in a recent interview. “But, outcomes that matter most to patients are how care affects their quality of life.” The clinic’s survival rate is the same as those using fee-based metrics but its erectile dysfunction rate is close to half and its incontinence rate is 85% lower than its counterparts.

When patient engagement is at the center of the treatment plan and outcome measures, rather than volume, are the focus of care, the quality and value of health care increases.

Value-Based Care in Autism

Unfortunately, it’s not that simple. In the field of autism, each individual is unique and co-morbidities, from constipation to serious heart ailments, abound. That complicates diagnoses, treatment plans, and expected outcomes.

So how do we apply value-based reimbursement to the provision of care for autism? Some experts in the field believe the system would require dividing patients into age groups and determining the matrix of life skills they would need to develop.

For example, payment for services delivered to elementary-aged children would be determined by their development of social, communicative, and adaptive skills, while reimbursement for teenagers entering young adulthood would track with vocational skill acquisition. Other indicators might include quality of life, independent living skills, and self-determination.

The Many Benefits to Value-Based Healthcare

Better outcomes are just one benefit of value-based healthcare. Because this model favors prevention, it has been found to require fewer hospital and doctor visits, fewer tests and procedures, and overall cost savings for the system. It also boosts patient satisfaction, as patient input is sought and incorporated into the treatment plan.

The value-based model would require providers to shift their service delivery to prevention, requiring more time per patient on the front end. It pays off in reduced time spent on managing chronic diseases. In the long run, the value is not just higher for patients, but for providers as well.

The long-run return also accrues to suppliers who will have the opportunity to realign their products and services with positive outcomes and long-term cost savings. The need for this is already critical as prescription drug prices continue to skyrocket and drain healthcare budgets of families and institutional payors like the U.S. government.

Are We Ready for Value-Based Healthcare?

The current system is so siloed among different types of providers, as if humans are simply the sum of their organ systems, each acting distinctly. A patient-centered approach could offer benefits on multiple fronts – notably good health and money saved – to individuals, corporate entities, and the system as a whole.

The fee-for-service model is highly entrenched, but its shortcomings are evident in ever-upward costs and desultory results. It will be interesting to see if proponents of value-based healthcare can overcome the barriers to change and overturn the status quo.

A tool that helps pediatricians diagnose autism with artificial intelligence and smartphone video passed a key FDA test and could hit the market as soon as next summer, according to device-maker Cognoa, which recently announced its plans to submit the tool for final approval.

In a trial to measure its safety and effectiveness, doctors diagnosing with the Cognoa tool made the same decision as an expert panel more than enough times to beat its FDA benchmarks, said CEO Dave Happel. He expects the device, which Cognoa says will be the first of its kind, to be approved in the second half of 2021.

If approved, Cognoa could offer a faster path to diagnosis. Parents notice signs of autism at an average of 14 months, but it takes three years for the median child to get diagnosed at 51 months. One reason for the gap is the wait to see a specialist, which can take months to more than a year.

In contrast, Cognoa’s process can provide a diagnosis as soon as two to six weeks after a pediatrician suspects autism and orders the diagnostic, said Happel. That means children could get treatment earlier while their brain is more easily rewired, he said.

Cognoa’s AI works by processing the data of three questionnaires: from the pediatrician, the parents, and an autism specialist who watches two short videos of the child filmed by parents in the Cognoa app. Then the pediatrician receives a result from the AI program, which they use to make a diagnosis.

Currently there is no way to verify the tool’s claims of effectiveness. “Cognoa is not sharing the study data until after we have completed our submission to the FDA,” the company said in an emailed statement, though it will be published in a peer-reviewed journal “in the coming months.” The FDA cannot verify or comment on product applications, said agency spokeswoman Stephanie Caccomo in an email. The agency granted Cognoa Breakthrough Device designation status in 2019, which is a program to speed up development if the device is more effective in treating or diagnosing “life-threatening or irreversibly debilitating human disease or conditions.”

Part of autism business boom

Cognoa, which has raised $60 million since its founding in 2013, is part of a broader infusion of capital into companies for autism products and services. That growth has been fueled by an increase in the number of children being diagnosed with autism and the passage of laws, in all 50 states, that require insurance companies to cover autism services, said Ronit Molko, a consultant to private equity on investments in behavioral health companies and cofounder of the Autism Investor Summit. In the past five years, said Molko, there have been more than 100 deals involving autism-related companies, including the $400 million purchase of an autism therapy provider. “It’s kind of like a feeding frenzy,” she said.

A 2017 report by Research and Markets projected that the US market for autism treatment will grow to $2.23 billion by the end of 2021. The majority of autism companies are service providers that teach social, language, and behavioral skills, said Molko, who cofounded one such business, Autism Spectrum Therapies, before selling it in 2014. Companies making diagnostic tools like Cognoa are comparatively rare.

Molko understands the skepticism by some autism clinicians that products like Cognoa could diagnose as effectively as a specialist who observes a child for as many as 12 hours. At the same time, she sees the promise of AI to cut down the waiting time for diagnoses and make them more accurate. That would help children get services sooner, she said. “The impact on life, and the family, and that individual child is huge.”

Insurance companies also see the promise, according to Happel. They are interested in covering Cognoa, he said, because it will be less expensive than the many specialist visits required for a traditional diagnosis. Insurers are also interested in the device’s potential to get children into treatment earlier, which could improve their diagnosis and lower their need for costlier long-term services. Happel also expects Medicaid, which pays for diagnosis and treatment, to cover Cognoa. The company is still working on pricing the product, he said.

‘Not the answer’

Catherine Lord, an autism clinician and professor at UCLA, agrees that a shortage of specialists like herself is behind the long wait for diagnoses. But products like Cognoa’s will not fix the long wait time, said Lord, the creator of a widely-used diagnostic tool, because they do not provide as many details about the child’s condition as a traditional diagnosis.

Without knowing the severity of autism or the presence of mental disorders, such as ADHD, that often accompany autism, parents can’t make informed decisions about their child’s treatment and education, she said. “The label is an important start, but it is not the answer,” said Lord, who regards Cognoa as a screening device. “It might increase knowledge and referrals,” she said, “but this is just going to send more kids to me.”

In an emailed statement responding to Lord, Cognoa said the device “provides pediatricians with the information needed to give a detailed diagnosis of autism … and prescribe specific individual early interventions” based on criteria from the American Psychiatric Association. For more complex treatment, pediatricians can make referrals to “local specialists and therapists who can provide more specific guidance when needed. A diagnosis of autism is often needed for eligibility to these resources.”

To Lord, there is a straightforward solution to cutting wait times and addressing the shortage of providers: Hospitals should hire more specialists to make evaluations, she said. They have not done that, she argued, because the procedures don’t make money. “The hospital pretty much breaks even,” she said — “or loses money.”

Graison Dangor Contributor

Imagine walking into your doctor’s office and being greeted not by people who invite you to wait, but by a scanner ready to gather information about your heart, kidney, lung and liver function. Scanning your body for a near-complete diagnostic work-up, the scanner forwards your results to a giant screen in the exam room where your doctor awaits — masked and gloved, of course — to discuss the results and create a personalized care plan.

This practice was already being implemented pre-Covid at doctors’ offices like Forward, a San Francisco-based company that combines cutting-edge technology with doctor-patient partnerships for clinical solutions personalized to the individual rather than the one-size-fits-all approach that dominates today’s clinical approach.

Humalogy = Humanity + Technology

The intersection of technology and humanity is creating new pathways for personalized, or “precision” care heretofore unattainable. We have already seen how genetic testing has revolutionized screenings for cancers and other conditions that have a hereditary component.

This is not a big leap. Hip replacement surgery involves the implantation of titanium ball joints in humans for improved quality of life. Pacemakers and left ventricular assist devices (LVAD) implanted in desperately ill heart patients can extend lives for years, even decades. And cochlear implants allow deaf people to hear. The march of progress suggests the pace of implanting non-human body parts will accelerate.

The Need to Proceed with Caution

Klososky predicts an accelerated pace of humalogy will lead to ethical dilemmas that must be addressed. “It seems so far away and difficult to get our hands around an augmented human being – a digital centaur as it were. Because I believe this is closer than most people think, and that it will be such a crossroads for humanity, I suggest we give a lot of thought to tomorrow’s implications today,” he said.

Klososky, founder of Future Point of View, sketches out optimum blends of humanity and technology. For a dad to play catch with his son, the optimum mix is all human. For an Internet search, an algorithm does all the work in hundredths of a second without human involvement. In many cases, a balanced approach that blends humanity and technology will serve humans best. We have seen this play out in the rush to telemedicine during the Covid pandemic.

This could be heady stuff for those of us in the autism community. If you’re like me, your head is swimming with ideas about how this could work for autism – and how it could go terribly wrong. We need to be especially careful not to attempt to “fix” those with autism. It’s one thing to use technology to diagnose and treat earlier and better, and to allay some of the effects of autism that interfere with the ability of individuals to function. It’s quite another to fundamentally change who someone is.

The Promise of More Precise Care

As the implantation of technology creates more diversity in the biology of humans, the implication for treatment of all conditions, including autism, is increased individualization of treatment. More than ever, patient health history, behaviors, environments and genetic variations will have to be considered when making clinical decisions.

During the Obama Administration, the White House launched the Precision Medicine Initiative with this in mind. The White House committed $215 million to “pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.”

Imagine for a moment the impact such tactics could have on the diagnosis and treatment of various cancers. Presently, most recommendations are based on averages and customized only to the extent of broad markers like age, sex and previous cancer history. Precision medicine could, and is starting to, replace that with a diagnosis and treatment regimen bespoken to the specific physiological characteristics of each individual. Colonoscopies, for example, are recommended based on age and family history. Treatment protocols for colon cancer are determined almost entirely by the extent of the cancer. Precision medicine could help improve assessment of risk for each individual and help craft a personalized treatment plan attuned to each patient’s unique physiology.

The benefits of personalized care can be extrapolated to every kind of condition and body system. The promise of precision medicine is more and better treatments tailored to an individual’s specific conditions, with the promise of improved efficacy and fewer side effects. In a nascent field like autism, where we are just beginning to understand etiology and treatment, the positive impact on outcomes could be significant.

Article written for Forbes.com.

Covid-19 is understandably viewed as a crisis in the U.S., with a death toll topping 100,000 amid an economic shutdown that catapulted the nation into an instant recession. Nearly every sector of the economy has been broadsided by its effects. Rippling beneath the surface have been pockets of technological advance and investment opportunities, perhaps nowhere more than in the healthcare sector.

We are witnessing a wave of unexpected innovations in healthcare caused by the pandemic. With staff furloughed to reduce costs and in-person service curtailed, healthcare organizations are discovering new, more efficient delivery models. These include deploying robots for remote patient monitoring, third-party telemetry tools, vastly expanded use of telemedicine and an array of streamlined check-in venues and methods.

Many of these advances will outlive the pandemic, as healthcare providers recognize the time and costs saved by diving deeper into technology. For example, although telemedicine has been around for decades, its sudden and nearly universal adoption during the COVID-19 crisis has revealed more vividly to healthcare executives its benefits. Doctors report that up to 80% of their visits are currently being conducted virtually and that this experience has led them to recognize that a significant percentage of medical issues can be addressed in this way.

“Telemedicine has suddenly transformed from being a long-term ‘nice-to-have’ for increasing efficiency and expanding access to an essential requirement for patient triage, diagnostics, and engagement,” say Jonathan Bluth and Adam Abramowitz of Intrepid Investment Bankers.

As volume-based care has suffered under the new paradigm, the long-awaited shift towards value-based care may finally come to fruition. Experts and advisors expect significantly increased attention to be placed on capitation, Medicare Advantage plans, and accountable care organizations going forward, all sparked by the pandemic.

Indeed, if providers can work with payors to secure long-term reimbursement and deploy sustainable clinical model improvements, COVID-19 might redefine the healthcare experience for the better. In general, many payers have loosened restrictions and changed regulations affecting billing during the pandemic to provide for wider coverage of telehealth services.

How will this alter the investment landscape in healthcare? The pause in mergers and acquisitions in the second quarter of 2020 may linger, say Bluth and Abramowitz. “The speed of change and lack of visibility of the scope of the damage and the timing and velocity of the rebound make it difficult to price risk and value assets,” they write.

Let’s consider the impact Covid-19 is having on the prospects of three healthcare sub-sectors: home health, long-term care and autism services.

Home health has been buffeted by the response to the virus, with providers scrambling to maintain distancing in a hands-on care delivery model. Home health agencies have responded with increased telecare visits and more phone and video calls. Phone apps are helping enlist the aid of neighbors by connecting homebound patients to their community for help with grocery shopping, pharmacy pickups and health monitoring. Taken together, these innovations are creating efficiencies in the home health model that can convey benefits to patients and investors after the crisis has ebbed.

The future is bleaker for nursing homes, where 30,000 of the Covid-related deaths have occurred. Costs have exploded as facilities work to meet CDC guidelines, patient loads have plummeted as patients pass away and leave unreplaced by admissions, staff have deserted for health fears and reimbursements have fallen as states rope-in Medicaid expenditures. Occupancy in many homes has dropped below the 80% break-even level and are unlikely to rebound while the coronavirus persists.

For autistic individuals, the crisis has been a decidedly mixed bag. On the one hand, those with autism may by nature practice social distancing and these new social norms may provide relief and ease anxiety for some of these individuals. On the other hand, disrupted routines particularly affect those with autism, especially kids who may rely on daily support from professionals in their homes and schools. A lack of in-home services and the widespread shut down of clinics leaves children and families without the stabilizing support systems upon which they once relied. In addition, many with autism are least prepared to cope with the social isolation and economic strain. More potent tools delivering care remotely can reshape the delivery of services and benefit those enterprises that act fastest.

Nonetheless, a changing landscape does not mean the industry is doomed. Despite difficulties brought on by shutdowns, in-home and school-based providers are surviving by providing enhanced remote services. While smaller providers are bound to feel a greater strain throughout the pandemic, lean times create more opportunities for add-on acquisitions by larger providers that are more equipped financially to manage the present disruption. In fact, we are already beginning to see this kind of activity, with larger companies buying smaller ones using creative deal structures and existing financial relationships, hopeful to avoid reticent lenders and complicated debt financing. We don’t know how much longer the industry will experience this drastic reshape, but the companies thriving in this current environment are the ones whose buyers and investors have raised their level of scrutiny when it comes to discerning whether these consolidation behaviors are sustainable or provide long-term benefit.

As we monitor the state of the industry in the weeks and months ahead, some questions will help us qualify the changes to come:

What telehealth solutions are viable on a long-term basis?
How do outcomes from telehealth compare to direct services? Who benefits from telehealth?
How has the use of telehealth during COVID changed the service provider model for autism services and to what degree will the model change permanently?
Which service providers will blend in-person services with telehealth better?
Will this cause the mid-sized providers to start consolidating? (so they can get more scale and take advantage of cost efficiencies.)

In the end, a spirit of innovation is what continues to propel healthcare services forward through this exceptional epoch. While the headlines may portend a stormy future, reasons for optimism remain. The expansion of telehealth to near ubiquity is increasing patient access at a time we need it most. A shift towards value-based care rather than volume-based care is underway, and consolidation activity is gradually starting to stabilize the market for service providers. With the right guidance, healthcare services could emerge from the pandemic stronger and more patient-centric.

Recent events have magnified inequities in our society along racial and ethnic lines generally and particularly in areas such as education, as instruction has moved online and become more parent-dependent. As one example, a 2019 study found that one-third of black households lack home broadband service and fewer than half own a computer.

This disparity inevitably affects autism diagnosis and treatment. Research in the last decade has found that black and Hispanic children are more likely than white children to experience undiagnosed autism, and to have their autism diagnosed later.

The impact of going undiagnosed is self-evident, but even waiting for a diagnosis is significant, as earlier intervention with behavioral treatment is closely associated with better long-term outcomes.

A co-author of a study on racial disparities in autism diagnoses told US News and World Report that the underlying causes are as yet unknown. “There may be various reasons for the disparity, from communication or cultural barriers between minority parents and physicians to anxiety about the complicated diagnostic process and fear of stigma,” said study co-author Dr. Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study.

The differences extend beyond diagnosis to treatment and acceptance issues. Minority children are less likely to receive specialty care related to autism, and the amount of money at least one state spends on their treatment is lower, according to a 2013 study that found spending on white children with autism was roughly 20% higher than on black and Hispanic children.

A study on California’s investment for ASD (Autism Spectrum Disorder) treatment found “spending differences based on race and ethnicity. Compared to whites aged 3 to 17, average per-person spending was close to $2,000 per person lower for African Americans and Hispanics, with the least spending on African Americans.” The problem, however, is not unique to California or even the US. According to another peer-reviewed study on demographic spending for ASD treatment, for “a small UK sample of adolescents with ASD, mean total costs, which were primarily educational, were 40.9% higher for white than non-white youth. Among children ages 24–60 months, mean costs were 10.0% higher for white than non-white children.” This disparity is a systemic, global problem that requires an urgent seachange in mindset and political will on behalf of industry professionals and civil servants alike.

Cultural factors are at work as well, says Catina Burkett, a social worker from South Carolina who wasn’t diagnosed as being on the autism spectrum until age 46. She says being black and autistic consigns her to outsider status in both communities.

“When I am inflexible, I am sometimes called unfriendly, insubordinate, lazy, aggressive or uncontrollable. When I need to process a situation before I respond to it, some describe my quietness as a ticking bomb that may go off at any time,” she wrote in an opinion piece in Spectrum News. “Within the black community too, many people have tried to hold me to their idea of how I should behave as a black woman.”

Upon her diagnosis, Burkett searched the literature for information about her condition and found a plethora of valuable research validating her sense of isolation, “but I could find no research on autistic black people,” she wrote.

Indeed, the Centers for Disease Control and Prevention offers no information on race or ethnicity for autistic adults and roughly five of every six studies on autism fail to report the race or ethnicity of participants. In those that do, minorities are vastly under-represented compared to their share of the general population.

In order to boost diagnosis rates, Dr. Zahorodny recommends screening all children from toddlers to school-age children for autism and educating pediatricians about employing creative strategies to overcome communication barriers with parents. These might include using pictures or engaging the services of a patient navigator to discuss autism symptoms, diagnosis and treatment.

The American Academy of Pediatrics (AAP) recommends screening for all children for ASD at the 18-month and 24-month well-child visits in addition to regular screening. But, identification and diagnosis is just the first step. For disadvantaged families, gaining access to services is more challenging and the long-term effects of this are profound. Drexel University’s 2018 study found that “nearly half of teens on the autism spectrum live in households with incomes at or below 185 percent of the federal poverty level (about $45,000 for a household of four). One in four lived in a home that received at least one form of public assistance”. Making a significant impact on access to services goes beyond the individual with autism- it extends to supporting families in accessing quality education, healthcare and other support services.

Autism occurs across all demographics and ethnic groups, however, the impact of autism is not felt equally across these groups. Children and young adults from poorer households and minority groups experience fewer opportunities for services and employment and generally demonstrate poorer outcomes across a range of factors.

A cultural shift within the autism community may also be in order wherein we recognize diversity within our community, acknowledge the added burdens some members endure and work to eliminate disparities in diagnosis and treatment.

Article written for Forbes.com.

Covid-19 has upended life globally, but perhaps no more than for the elderly, children and disabled individuals receiving health care services in their homes, and for the caregivers themselves. Ten million Americans rely on home health services for such disparate health needs as speech therapy, autism services, wound care and personal hygiene.

For those over age 65, who comprise the overwhelming majority of Covid fatalities, the severe consequences of a deadly virus are exacerbated by the isolation it is imposing upon them. While families are sheltering at home together, homebound elderly are most often alone. Sheltering and distancing guidelines may be keeping friends and even family members from visiting.

Social activities, such as attending lectures, going to movies and playing Mah-Jongg with friends, have been curtailed. The result of this is social isolation that leads to an increase in mental health conditions such as anxiety, depression, and suicidal ideations. For those with conditions such as Dementia or Alzheimer’s, there is increased confusion and sadness due to the lack of comprehension and recall about the current situation.

The requirement to isolate and avoid going out makes medical care of the elderly and more fragile populations problematic. For example, while individuals managing health conditions such as diabetes or high blood pressure may be able to live relatively independently, going grocery shopping, obtaining medications and maintaining the activities that sustain health such as walking and exercise are much more challenging, if not impossible.

For those in residential facilities such as nursing homes and assisted living facilities, social distancing may mean being isolated in their rooms alone almost 24/7, with brief interactions from staff to receive food and medicine. The lack of mental stimulation, physical activity and social interaction are harbingers of mental health breakdown, to which the elderly are already more prone. It is sobering to consider that this is the punishment imposed upon prison inmates whose actions suggest they are a danger to others.

With recent changes to the Medicare program addressing the Covid crisis, many hospitals and doctors have pivoted to using telehealth and virtual appointments to see patients, which can address many issues and keep medical care current. Technical challenges are prevalent with many elderly patients struggling to use face-to-face telehealth platforms. Medicare is allowing individuals to receive services via phone, without the visual component, but this certainly has its limitations. Additionally, Medicare has revised the requirements for some coverage decisions, no longer demanding face-to-face visits and allowing patients to receive longer supplies of prescriptions.

Home health care agencies are deploying skilled care to homes for some services, but not others. For example, they are taking samples of body fluids for testing; however, the necessary physical examinations are lacking, assessments for memory loss and functioning are impacted by phone-only options and routine medical exams such as colonoscopies and scans are not being performed. This may result in increased health issues and illnesses down the road.

Meanwhile, health care providers are facing their own challenges. The Centers for Disease Control has issued guidelines for care that include daily temperature checks and personal protective equipment like N95 respirators and latex gloves. Many home health workers fear for their safety and the safety of their families should they bring the virus home with them.

While children appear to be less at risk from the virus itself – they comprise just 2% of confirmed cases in the U.S. and incur mild-to-moderate symptoms 90% of the time – children with significant healthcare needs face daunting challenges. Cloistered at home and without the support structure of school, they are now entirely reliant on their parents and those home care providers who continue to visit. Limited home care may mean health regression or the onset of new health challenges.

Home health care strategies have been forced to shift radically because of Covid-19 and new long-term approaches will be required as the ramifications of the virus linger beyond 2020 into the foreseeable future. For now, its effect on home care patients and caregivers has been profound – and the full extent of it has yet to be revealed.