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Let’s Stop Fixing Disabilities And Start Appreciating Differences

man in a wheelchair rolling through a pedestrian crossing surrounded by people walking in all directions

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”.

Healthcare Services Present and Future

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

Latin American Doctor Checking Patient Infected Of Covid-19 At H

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

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

Hypochondriac Concept Disease Panic Of Outbreak Anxiety And Hypo
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

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.

Article written for Forbes.com.

A Different Kind of Autism Awareness Month

April is Autism Awareness Month, but unfortunately we will not see a Walk for Autism, Autism 5K, cookie fundraisers or Awareness Day celebrations during this extraordinary and unprecedented time.That doesn’t obviate the need or desire to increase awareness and understanding of autism throughout our country – and the world. It just requires some creativity to penetrate the consciousness of a population whose attention may be focused on the Coronavirus pandemic, social distancing and flattening the curve.

This is the 48th anniversary of the first Autism Month and in that time awareness has indeed exploded in concert with the incidence of the condition. Yet there is much work to be done before communities and policy makers have a firm grasp of the abilities, challenges and needs of autistic individuals. While the Covid-19 pandemic is a sudden global health issue today, autism is a daily global health issue that has been growing for decades and will continue into the future.

To recognize Autism Awareness Month while maintaining a safe distance from others will require individual initiative  and creativity this year. Here are just a few suggestions for actions you can take to promote understanding of autism and autistic individuals.

1. Find Events That Have Been Moved Online

Not all events have been cancelled. For example, the South Austin Support Group in Texas has been moved to Google Hangouts, where parents and caregivers can find a supportive community to discuss issues they face. A similar group in El Paso has been moved to Zoom, where participants can see and talk to each other in real time.

2. Share Best Practices with Others

You likely know people in your community who struggle with the issues around autism, whether they are autistic adults, parents of children with autism, caregivers or others. Take this time to reach out to one or more of your neighbors to lend support and trade tips you have discovered.

3. Celebrate Your Child’s Accomplishments

With all the stressors that Covid-19 brings, it is easy for parents to become despondent about their children’s progress. More than ever, this is a time to appreciate whatever strides your children have achieved. Take a little time each day to congratulate yourself and celebrate your child for the progress they have made.

4. Educate Your Co-Workers About Autism

You may be reticent about sharing your personal issues with co-workers, but Autism Awareness Month provides an opportunity to make an exception. And while you may not be working alongside your co-workers these days, you’re probably still communicating with them extensively. Discussion of the effect of distancing, school closures, and changes in routines on home life is the perfect entrée to a short education of the challenges and triumphs of having a child with autism.

5. Join a Webinar

Catch up with the April 4 webinar Autistic Explosion with Dr. James Coplan, who employs 3D modeling to illustrate the scope and types of autism. It has been recorded and is available online.

6. Support an Autism-Friendly Business

Families for Effective Autism Treatment in Louisville has created a registry of autism-friendly businesses in their area. Verywell Health, an online resource for medical information, has compiled a list of autism-friendly national businesses that includes companies whose products and services you could be purchasing now, like Microsoft, Home Depot, Walgreens, Ford and Smile Biscotti. These companies are intentional about hiring and training autistic individuals.

7. Lobby Your Legislators for Changes During the Covid-19 Crisis

Writing for Spectrum News, disability rights activist Ari Ne’eman has identified several legal constraints on caregiving to people with disabilities, including autism. He encourages others to lobby for removing caps on worker overtime, permitting family members to serve as support workers, preventing “temporary” institutional placements and ensuring continued oversight of group homes and other institutions for the disabled. Read the entire article here.

8. Focus on Your Child

The best advocacy any parent can do is with their own child. Advocacy takes place with your child’s teachers, in your neighborhood, on the playground, at the City Council, or anywhere others need to be educated about autism and persuaded to treat autistic children appropriately.

9. Make Every Month Autism Awareness Month

With two percent of children born today on the spectrum, ignorance and misunderstanding of the issues affecting autistic individuals will have significant and long-term ramifications for our nation. Let’s work to improve awareness and insight year-round.

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

Helpful Tips for Your Child’s Routine Change

By: Ronit Molko, Ph.D., BCBA-D and Sally Burke, M.S. Ed., BCBA

The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Although families deal with planned schedule changes or transitions, such as school vacations and summer breaks every year, what we are currently experiencing is different. This is a sudden disruption to our everyday routines with the added pressure of trying to create a viable learning environment to accommodate home schooling or online learning as schools try to complete the year in a virtual environment.

This sudden disruption means that both teachers and parents have not had adequate time to prepare for distance learning and that children have unexpectedly been pulled out of school. Children rely on set classroom schedules and routines and seeing the same friends and teachers every day. Now add into the mix the cessation of center-based services, therapeutic interventions, and possibly in-home visits being limited or put on hold to help minimize the spread of Coronavirus (COVID-19) across the United States. This will likely cause confusion and uncertainty for many. Easing anxiety, setting up activities, and staying busy during these unexpected and possibly challenging times can help with this change.

Being transparent about the situation:

Easing any anxiety your child may be experiencing, due to the changes in schedules and routines, is the first step to settling in to a “new” temporary schedule. Children will perceive the added stress and anxiety in the environment and so it’s important to explain to your child what is happening in their world. Keep it simple with basic information and present the facts at the level appropriate for your child’s age and ability to absorb this type of information.  Even though you may be concerned yourself, it is important to model calmness when talking about the virus. Children pick up on your social cues and how you respond to new things. If they have questions, answer them. Don’t be afraid to talk about it. Remind them that they are safe. And, remind them that this will end and they will return to school and to their favorite activities.

There are a variety of websites with information on how to talk to your child about the coronavirus. This website offers a social story about the change in schedule due to the Coronavirus as well as a printable PDF.

An increase in sensory needs, anxiety and meltdowns:

Individuals with Autism Spectrum Disorder generally have increased sensory needs and it is likely that those needs will not be met during this challenging time. Expect to see an increase in anxiety, depression and perhaps OCD. Additionally, since autistic individuals frequently have trouble communicating verbally, often the only sign that your child is experiencing anxiety is through external expressions such as meltdowns and increased self-stimulatory behaviors. It is likely that you may see new behaviors in which your child may not have engaged in previously.

It is important to provide the space for your child to express his concerns. Russell Lehmann, motivational speaker and author reminds us that outbursts and meltdowns are the expression of inner pain, overwhelm, confusion, stress and anxiety. Simply, be present with your child and listen more than you talk. Validation of their experience and a safe space to release their emotions is important in helping to move through it. Helping children take long deep breaths throughout the day will calm the nervous system (both yours and theirs) and help to mitigate the build-up of stress and emotion.

Establishing routines:

It helps to create a routine at home that provides consistency and predictability. If your child does better with visual schedules, there are great resources available to you on the internet that can help you create your own daily written or visual schedules. We tend to take for granted that we know what is coming based on the time of day (12 means lunch is near), but many of our children can’t associate time of day with certain activities. Creating a schedule will help allow them to see what’s coming next throughout their day and may help to lessen some challenging behaviors that may emerge due to their lack of routine.

If this feels overwhelming, try creating mini-routines for different parts of the day; a waking routine, a morning play routine, a “schooltime” or learning routine,  a lunch routine etc. This is also a great opportunity to create and teach hygiene routines such as handwashing.

If you are receiving in-home ABA, seek help and advice from your BCBA to assist you in developing a daily schedule that will help meet your family’s needs. There are also greater resources available, via Telehealth, to receive parent training from your BCBA.

Staying busy, especially during your child’s typical school, daycare or ABA-service hours is the next step. The solidarity of many world-wide educational and additional sites offering free online resources is remarkable during this time of uncertainty. Educational sites, as well as museums, zoos, and even Disney are offering virtual treats for children of all ages. There are free options for temporary internet service if your family needs it. This is also a time to connect with your children in new ways- cooking or baking, playing cards and boardgames, taking a walk, making up games, and learning life skills. Alternate your schedule between electronic activities, written work, crafts or projects and playing inside or outside when available. Use transition warnings (timers, first/then statements and choices) whenever possible throughout the day to help navigate and manage their new schedules.

Remain calm, set up a new daily routine and stay busy. And remember that patience, not perfection, is the key. Know that this is going to be hard- taking it moment to moment makes it more manageable. These tips should help minimize the effects of these sudden and unexpected events on your child and your family. Stay safe and healthy.

What Pediatric Traumatic Brain Injury Can Teach Us About Autism

What-Pediatric-Traumatic-Brain-Injury-Can-Teach-Us-About-Autism

Nearly three million Americans suffer a traumatic brain injury (TBI) each year, one quarter of them children. Most of these are mild, resulting in concussion, but 50,000 deaths result from TBI annually.

At the same time, one in 59 children is diagnosed with autism spectrum disorder each year. Three and a half million Americans live with autism spectrum disorder (ASD).

These two conditions share more than a surprisingly large impact on our children: they share many biologic mechanisms and symptoms. Researchers have begun inquiring into how diagnosis and treatment of ASD and TBI might inform each other and lead to breakthroughs in one or both.

Children with traumatic brain injuries exhibit many of the same challenges as children with autism. These include deficits in intelligence, memory, attention, learning and social judgment. Anatomical changes to the brain resulting from TBI can impair emotional decision-making, self-regulatory behavior, emotional perception and the ability to recognize non-verbal cues. These are also classic characteristics of autism.

Children with ASD often present with decreased diversity of microflora in their intestines, which can hinder brain development. For children suffering TBI, reduced metabolism can also lead to a lack of microflora diversity. Whether the nature of this reduced diversity is similar in the two groups will require more study, but administration of probiotics has had success in both.

Brain plasticity – the ability of one region of the brain to rewire itself to execute functions normally performed by a damaged region – offers a ray of hope to TBI patients and autistic individuals. With intense therapy, brain stimulation and intervention, children with these two conditions can learn new skills by “training” their brains to process information in new ways.

Applied behavior analysis (ABA) is considered the gold standard in autism treatment given the extensive research conducted on its efficacy. It is employed to redirect behavior from harmful and counterproductive to useful and beneficial, and to teach critical skills for independence. Begun early in a child’s life, the progressive learning process of ABA therapy has demonstrated success in addressing multiple deficits – e.g., verbal, attentional, and learning – associated with ASD. ABA is now being used to readapt pediatric TBI patients to their home environment. As with ASD, this therapy yields optimum results when begun early and maintained over time.

ABA requires children to verbalize (or express using assistive communication devices) the instructions they have been given in an iterative approach that builds beneficial habits. This progressive learning process is applied to multiple behaviors characteristic of ASD and TBI. Additional strategies such as Pivotal response treatment (PRT), based on the principles of ABA, targets “pivotal” areas of a child’s development instead of working on one specific behavior. By focusing on pivotal areas, PRT produces improvements across other domains of skill development.

Verbal behavior therapy is a comprehensive language program that focuses on understanding the purpose of words and how they are used to communicate specific ideas. Also built on an ABA foundation, verbal behavior positively reinforces correct use of verbal and non-verbal communication that connects the speaker and the listener.

Although ASD and TBI present similar symptoms, there is no evidence that ASD is caused by trauma or injury to the brain. Its causes appear to be multifaceted and complex, including genetics, fetal conditions and various maternal and paternal factors. Like TBI, skill development and expansion can be optimized with behavioral treatment that begins as soon as possible.

How AI Can Transform the Autism Services Industry

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Imagine providing parents with an app that enables them to upload videos of their children, analyzed by computers applying algorithms to diagnose autism earlier in their development than currently possible.

Imagine equipping autistic individuals with smart glasses that whisper instructions for navigating social situations in the user’s ear.

Imagine two-foot-tall humanoid robots that could serve as therapists for use in treating children with autism.

Artificial intelligence (AI) has made all this possible today. AI, equipped with machine learning, is improving constantly, and is positioned to become a critical adjunct to the human element in the diagnosis and treatment of autism. The operational and clinical advantages these advances convey are creating added value propositions for those enterprises that embrace it.

AI Disruptors in Other Industries

The ground for these paradigm-shifting advances has been well-trod in other industries. Consider how Waze disrupted the navigation business less than a decade ago. When other mapping apps stumbled to diagnose traffic jams and redirect travelers, Waze crowd-sourced traffic reports and provided real-time data about traffic incidents, speed limits, speed traps, and other valuable trip information to navigate the fastest possible route. As a result, the navigation app captured market share from Google, Mapquest, and other providers, with 25.6 million monthly users by 2018.

Waze has exploited that unique value add by establishing a ride share component that allows users to find, connect and ride together at a fraction of the cost of Uber and Lyft, themselves industry disruptors. Waze is also being accessed by governments and researchers seeking real-time data collected by its users. In Israel, researchers are asking Waze users to report roadkill, so they can track animal collisions and reroute animal movements to avoid them. The city of Hampton Roads, VA is mining Waze traffic data to determine where flooding is most acute as they develop their flood maps.

The Story of AI in Autism Services

The frame-breaking opportunities are similarly ripe in the autism services industry.  The platform created by Cognoa, a Palo Alto-based pediatric behavioral health program, uses machine learning and predictive analytics to analyze parent input of behavioral information to diagnose autism earlier. This allows intervention and customized education to begin in the critical early years of a child’s brain development.

Another AI solution developed by Brain Power, helps autistic individuals manage their emotions with a wearable digital coach that recognizes social situations and guides the user towards appropriate responses. This facilitates increased functional independence, also enabling some to interact more effectively in a standard workplace setting.

Monitors and wearable devices can also deliver a plethora of health, activity, and geographic information about clients in real time. With some analysis, staff could correlate patient meltdowns with changes in physiological ratios such as a spike in blood sugar levels, increased heart rate and sweating.

As an example, for individuals whose sugar intake is correlated with aggression, making dietary changes and collaborating with parents to monitor sugar and carbohydrate intake could reduce the frequency of outbursts and the required interventions, and would improve client outcomes and quality of life.

AI’s Impact Is Clinical and Operational

The business imperative for artificial intelligence covers the operational aspects of the autism services business as well. Employing this new business intelligence would enable service providers to tackle issues such as scheduling in a more targeted manner. If traffic on Friday afternoons in one location is causing sessions to start late, for example, modifications can be made to maximize session time.

This avoids the current practice of implementing policy and process changes across the board that may have negative impacts on service delivery in a different location where Friday afternoon traffic is not an issue. It is an ongoing process: continuing use of these tools could help determine which modifications were working and whether they were creating cancellation bulges elsewhere in the schedule.

The artificial intelligence that drives these revelations is the business imperative of the future of autism services, if not the present. It will eventually be a normal part of every autism service enterprise, as it already is in many industries. The early adopters will exploit a market inefficiency to deliver services that their competitors lack.