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Value-Based Healthcare

Ronit Molko, Ph.D., BCBA-D

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 sign for the Food And Drug Administration is seen outside of the headquarters

This AI Tool For Diagnosing Autism Could Hit The Market ‘In The Second Half Of 2021’

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.

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

Technology, Personalized Medicine, And Autism

Technology, Personalized Medicine, And Autism

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.

Autism Matters and ABA Insights from a Senior Executive, Entrepreneur, and Author

LISTEN TO THE EPISODE

Dr. Ronit Molko is the author of Autism Matters: Empowering Investors, Providers, And The Autism Community To Advance Autism Services

Jarbly University · Episode #14 With Dr. Molko (1)

 

Summary: Do you want to take part in a nationwide movement towards improving long-term outcomes for people with autism and behavioral disorder’s. Join Dr. Ronit Molko, a licensed clinical psychologist and cofounder of one of the largest autism service providers in the nation, who will share some of her 3image of a boy sitting and looking up, smiling around puzzle pieces0 years of experience to innovate the current model of service delivery, forge new programs and create opportunities that will better equip individuals on the spectrum with the skills they need to build quality, self-determined, independent lives.

What You Will Learn in this Interview:

1:49 – Background on Autism and how individuals and caretakers can help those with autism live a fulfilling life

13:56 – Studying and looking to establish purpose and path forward to have a career path like Dr. Molko (supervising, clinical psychology, behavioral analysis, investing)

19:28 – Current support systems that are in place and preparations to handle and support with proper treatments during Coronavirus.

24:08 – Core traits and characteristics that have led to entrepreneurship and investment leadership, advancing behavioral healthcare across verticals.  (Environment for high quality intervention)

30:06 – Keen insights on evolving relationship between technologies and the broader population who have disabilities and diseases (IoT, apps, connected devices)

36:34 – Trend to reduce overall healthcare costs (advice to help families dealing with autism diagnosis)

41:00 – Personal thoughts on Senior Care, especially in assisted living communities which are in full focus right now and desperately need an overhaul

Dr. Ronit Molko Executive Profile

Dr. Ronit Molko is a dynamic senior executive and entrepreneur recognized for combining strategic vision and technical expertise to drive business initiatives. In 2001, Dr. Molko co founded Autism Spectrum Therapies Inc. (AST), which grew into a highly respected, multi-state provider of services for individuals on the autism spectrum. In 2014, she sold her company to Learn It Systems, a private equity backed strategic buyer, and then she served as President of Autism Services for the combined family of companies until early 2016.

Today, as CEO and Principal of Empowering Synergy, Dr. Molko conducts due diligence for investors. She also consults as an expert in the field of service delivery for healthcare, with a special focus on behavioral healthcare and companies that provide services to families affected by autism and developmental disabilities.

In 2018, she released her latest work, “Autism Matters: Empowering Investors, Providers and the Autism Community to Advance Autism Services,” published by ForbesBooks.

Dr. Molko is currently a board member of the Los Angeles Chapter of the Autism Society of America and the Galt Foundation, which places individuals with disabilities in the workforce. She has been actively involved in many healthcare-based committees and organizations throughout her career and has received multiple awards in recognition of her business prowess and leadership abilities. She is a licensed clinical psychologist in California and Washington states, and a Board-Certified Behavior Analyst.

VIEW DR. RONIT MOLKO’S LINKEDIN PROFILE

ASK DR. MOLKO A QUESTION

What Pediatric Traumatic Brain Injury Can Teach Us About Autism

Healthcare Services Present and Future

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.

Home Healthcare & CoVid-19

Home Healthcare & CoVid-19

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.

By: Ronit Molko, Ph.D., BCBA-D
How Race and Ethnicity Affect Diagnosis, Treatment and Support for Autistic Children and Adults

How Race and Ethnicity Affect Diagnosis, Treatment and Support for Autistic Children and Adults

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.

Coping with Stress in Unprecedented Times Part 2

Coping with Stress in Unprecedented Times Part 2

In my previous post, I explored the tumult of unusual activity flowing into and out of our brains as a result of the novel Coronavirus and the worldwide response to it. The threat to lives and livelihoods, the near-total curtailment of social interaction and the departure from normalcy – all of these taken together are wreaking havoc with how we think and feel.

Worse yet might be the increased uncertainty that accompanies all this. 9/11 happened over the course of a morning. Pearl Harbor was a rallying point for action. While the devastating emotional and psychological trauma of these events can be lifelong, the events themselves were flashpoints—over in a matter of hours. We were able to begin picking up the pieces and take corrective action more immediately. With Covid-19, we’re stuck inside our homes living this new distanced reality, with serious economic impact for many, for who-knows-how-long.

As I noted in Part 1 (Blog Part 1), experts in the field of psychology and brain science  empathize with the challenges our brains are facing but also remind us that we can use our brains in an intentional way to manage our thoughts and emotions to some degree and create productive habits. We can accept that this is the new normal until it isn’t, remain positive, focus on the good things in our lives, and divert ourselves with creative and meaningful activities.

For individuals with autism individuals, the calculation is somewhat different. Most autistics thrive on predictability and structure, and struggle with change, even changes many would consider small and inconsequential. Having their lives turned upside down, as they are now, falls somewhere between extremely distressing and catastrophic.

For caregivers of children and adults with autism, the need to perform “social distancing” is incongruous. Their services are, by definition, one-on-one and in person. As Leann McQueen, a residential coordinator for the Young Adult Institute in Brooklyn, told ABC News about her organization’s services to young people with disabilities, “People need assistance with personal hygiene. Even being asked to wash your hands can be more challenging.”

Christine Motokane is an articulate self-advocate to whom I spoke when conducting research for my book, Autism Matters. In her blog, Redefining Normal: A Young Woman’s Journey with Autism, she outlines some of the challenges she faces in this extraordinary time. Everything that is familiar to her has closed – her workplace, her favorite restaurants, other non-essential business – even the weekly outings with her support person have suddenly ended.

“I had to spend and celebrate my 28th birthday at home. All of these sudden changes coupled with the fluidity and ever-changing nature of this situation, has caused my anxiety to skyrocket,” she writes.

This is particularly worrisome because anxiety is often a constant state of being for autistic individuals who are hyper-sensitive to stimuli like light and touch. While “social distancing” has relieved many of those with autism of the anxiety about shaking hands or otherwise engaging in unwanted physical contact with others, and may be comforted by the six foot barrier others are maintaining, they must also confront a degree of exacerbated uncertainty that we all find discomfiting but those with autism may be traumatized by.

Autistica, the UK’s leading autism research charity, notes that autistic individuals react to uncertainty by avoiding such situations, by over-preparing for them or by gathering information that might reduce the uncertainty. None of these strategies is well-suited to this crisis because it can’t be avoided, over-preparing can lead to hoarding and gathering information about an unknown can just result in heightened anxiety.

The strategies that I enunciated in the previous post to manage anxiety about COVID-19 probably apply to everyone, inadequate though they may seem. Keeping as much of the normalcy in our lives as possible, creating a routine and some structure to our days and engaging in activities that enable some type of social contact can ward off some of the avalanche of change in our lives.

This reminds me of a story I came across in my research about maintaining the positive therapy momentum for children with autism during COVID-19. One mother, in an effort to keep life as normal as possible for her son, wakes him up at the usual time, has him dress in school clothes, maintains the entire morning routine, ushers him into the car and drives him around the neighborhood for 20 minutes before returning home for “school”.

Unfortunately, many parents have neither the time nor the bandwidth for such an effective regimen, innovative though it is. They are struggling to keep it together themselves, juggling work at home with the intrusions of family and a lack of respite from 24-hour-a-day demands of caring for children and keeping them constructively busy.

For situations like that, it’s important not to let perfection be the enemy of good. There is no playbook for a circumstance none of us has ever encountered before. Any steps families take, even small ones, like maintaining wake-up and bedtime routines, creating regular family fun time (playing games, reading books, etc.), exercising and dedicating time to learning daily, will all help to maintain a sense of routine and normalcy which will accrue to the benefit of all of us, adults and children alike.

Published By:
Ronit Molko, Ph.D., BCBA-D
Advisor to Investors in Behavioral Health

Coping with Stress in Unprecedented Times- Part 1

Coping with Stress in Unprecedented Times- Part 1

By Ronit Molko, Ph.D., BCBA-D

Pity your brain. This unprecedented epoch we are experiencing is playing havoc with our most vital organ, the one that is designed to act as the air traffic controller of our bodies during the impenetrable fog of a lockdown.

Our brain through our nervous system is constantly evaluating and detecting risk with the ultimate goal being safety. This occurs at a primitive level within our brain without our conscious awareness. The primary element that challenges safety and stability is uncertainty. The brain is wired to detect fear and we have an overwhelming amount of fear-generating information right now.

COVID-19 has brought the world to its knees. First, there is the physical threat of a virus that is undetectable and about which we are learning as it unfolds. Second, is the constant mental anguish caused by the uncertainty about the future, even about tomorrow.

As a result, we are seeing extreme levels of stress, anxiety, and incremental  increases in depression and addiction. The tidal wave of negative information and emotion creates a continuous brain hijack (as the brain works to manage this threat) and overwhelms our cognitive processing. This stress keeps us in a fight or flight state, affecting core brain capacities such as thinking and decision making. Hoarding of supplies and increased aggression in people are some observable results of these affected capacities.

So if you are feeling stressed, anxious, and exhausted, it’s completely normal under these circumstances.

Jump To Acceptance

In fact, Dr. David Kessler, who collaborated with Elisabeth Kübler-Ross on her treatise, On Grief and Grieving, says that what many Americans are feeling is grief. He says we have lost our normalcy, our future plans and our connection to others, ironically in a collective grief experience.

Worse yet is the uncertainty that imperils not just our health but our financial stability. We don’t know when this catastrophe will end – could this go on for six months, a year? – and that is flooding many of us with anxiety. Dr. Kessler calls this “anticipatory grief.”

Dr. Kessler recommends that we consider the six stages of grief that his co-author famously enumerated and jump as quickly as we can to acceptance. “We find control in acceptance: I can wash my hands. I can keep a safe distance. I can work virtually,” he told the Harvard Business Review.

Four Strategies to Tame Stress

Dr. David Whitehouse, the psychiatric medical director for Able To, a leading provider of virtual behavioral health care, told the Total Brain podcast of four keys to confronting the anxiety sparked by the COVID-19 crisis.

He recommends we identify what we are feeling; avoid catastrophizing, i.e., steer clear of talking ourselves into depression; focus on the positive; and engage our creative right brain.

We have about 50,000 thoughts a day, that’s 2,100 thoughts an hour.

Positive thinking has long been known to improve our overall outlook and boost our performance. Barbara Frederickson, a psychology professor and researcher at the University of North Carolina, has demonstrated that positive thinking opens us to more options than does negative or neutral thoughts. Rather than wallowing in negative thoughts and emotions, simply reminding ourselves that this situation is temporary can have significant salutary effects physiologically and emotionally.

“You can, in fact, drive that negative analytic off the table,” Dr. Whitehouse says.

Physical exercise is an elixir for stress as well. Pushing ourselves physically focuses our attention on the moment and boosts our depression-fighting endorphins. In fact, exercise is often prescribed for patients with mild to moderate clinical depression.

Deep breathing has a similar impact on us physically. It stimulates the vagus nerve, which acts as a crossing guard at the corner of flight and flight. By calming the fight or flight response, the vagus nerve allows our body to relax and our vital signs to settle back to normal. Research shows that our heart can synchronize with our breathing, so that reduced respirations produces a slower heart rate and lower blood pressure.

People who struggle with anxiety often feel that their lives are out of control. In fact, many who struggle with anxiety attempt to control every facet of their lives; when their plans fail, anxiety often comes back with a vengeance.

A relatively simple way to overcome this problem is to establish a routine. Setting a schedule and applying some self-discipline to stick with it allows us to control our daily activities to the extent possible. Adding this structure to daily living can also unlock additional free time to enjoy other things.

There is also one common sense measure we can all take to avoid driving ourselves crazy: limit our exposure to the news. At this point, there isn’t much new to learn about COVID-19 other than that we must isolate ourselves, wash our hands and practice social distancing. All the speculation about how much worse it will get or how long we must wait for normal life to resume, or for the new normal to unfold, produces anxiety without insight. So in this time, limiting exposure to news and information is self-preservation, and while I wouldn’t ordinarily recommend this, less information means more peace of mind.

What these prescriptions have in common is that they are under our control. If we commit to accepting the current circumstances, thinking positively, challenging our bodies and minds, avoiding the news and simply taking a deep breath, we can calm our brains and reduce our psychic pain.

WHY BUSINESSES SHOULD CARE ABOUT ADA WEBSITE ACCESSIBILITY

WHY BUSINESSES SHOULD CARE ABOUT ADA WEBSITE ACCESSIBILITY

Following up on my previous post about the relationship between technology and autism services, I want to revisit my discussion with Daryn Harpaz, an ADA website accessibility and compliance consultant and CEO of ZenythGroup. During this extraordinary time of sheltering in place due to COVID-19 , it is particularly pertinent to focus on the accessibility of technology, which is powering all of our online interactions.

More than ever, the services available on websites must be accessible to everyone, including those with disabilities, now that online platforms are our primary method of communication and commerce.

Daryn and I discussed the current state of affairs with respect to online accessibility issues for disabled individuals, which I have noted as merely the tip of the iceberg in the urgent question of inclusivity in the Internet age.

You can read Part 1 of my review of that discussion in which Daryn revealed that it does not appear that businesses generally have prioritized accessibility of their websites, and that has cost them in terms of brand loyalty, sales and litigation. On the Federal level, a lawsuit is filed every hour against businesses whose services on the web are inaccessible to the disability community.

“We’re looking at 15% of the world’s population with a disability – that’s over a billion people, of which 61 million are in America,” Daryn notes. This is a massive cohort to write off. Excluding those with age-related issues, individuals with disabilities purchase half-a-trillion dollars in goods and services annually. They are also fiercely brand loyal to businesses that cater to their needs, and now businesses are finding that they are also willing to use the courts for relief. Losing their support is a colossal missed opportunity and—in those cases in which legal action is involved—can be very expensive to defend.

Target discovered the pain of ignoring the accessibility issue when it paid an estimated $10 million in fees and remediation to settle a lawsuit filed by a prospective customer who could not navigate its e-commerce platform. That says nothing of the loss of brand equity the company suffered, particularly in the disability community.

The business imperative tends to spur businesspeople to act, and so Daryn reminds them that, “more than 85% of websites that are visited do not provide an inclusive experience. And we know that over 80% of people with disabilities say that they would return to a website if it was accessible and they would shop more often and support that brand.”

ZenythGroup offers businesses critical services to help them achieve full digital accessibility and remain compliant with the Web Content Accessibility Guidelines (WCAG). After manually auditing websites and online platforms by using people with disabilities to provide real-world testing, the firm provides corrective measures to meet WCAG best-practice standards. Thereafter, he says, compliance is a critical, ongoing need because websites are fluid and require continual monitoring.

Ultimately, this is a problem not of technology, but of the heart. Here’s how Daryn put it:

“If you are, as a business, catering to society, regardless of ability, you’re going to succeed as a company. And if a business owner could meet, engage or otherwise interact with the disability community, I believe that they would see the human aspects of this and want to do better. It shouldn’t have to be under the requirements of a lawsuit or the threat of penalties and fees to want to do better. Instead, we should be enabling our community from a social aspect to be integrated and inclusive. And I think that says a lot about where we need to move in the direction of disabilities in general.”

It’s worth mentioning that a myriad of accessibility widgets and overlay solutions are now available on the Internet for download and claim to offer an easy-fix. However, being that these widgets are automated, they miss the majority of WCAG issues and are often confusing and challenging for people with disabilities to interact with.

While overlay solutions can play an initial role in providing a short-term patch, this band aid approach will only deliver minimal accessibility. Core WCAG issues must be resolved via manual testing, code remediation and continuous accessibility best-practices.

Daryn reminds organizations to work with a reputable accessibility company that can ensure your organization achieves and maintains ADA compliance with hands-on feedback from the disability community, ongoing manual testing, and a mature process that mitigates risk.

Ronit Molko, Ph.D., BCBA-D, is an Autism Industry authority, speaker, and ForbesBooks author of Autism Matters.
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