Disruptive Change, Learnings and a Path Forward for I/DD Population

The COVID-19 pandemic of the past year can clearly be identified as a disruption or a disturbance that was not anticipated across the globe.  The pandemic can be further categorized as a black swan, a low-probability, high impact event that has the ability to dramatically alter the course of history.

In many industries, this black swan has influenced transformation at high speed in order to adapt to rapidly changing conditions, which will forever change the way that some markets conduct business.  One example is education in the United States.  Although face to face instruction will resume at some point in the future if it has not already, the ability to provide virtual education has been proven, refined and made available at the ready if and when conditions demand this option.  Another example is flexible, remote work arrangements in market sectors where face to face interaction is not required.

Disproportionate Effects

The pandemic has had a disproportionate impact on people with intellectual and developmental disabilities, who in the United States, represent one out of every six Americans.  The World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC) deemed that people with IDD had an increased risk of infection and complicated outcomes from the coronavirus.  Many people with IDD have underlying medical conditions and are three times more likely than adults without disabilities to have heart disease, stroke, diabetes or cancer.  Historically they have not always had equal access to care needed to manage these serious medical conditions.

It can be asserted that compared to the non-IDD population, the IDD population was already relatively isolated prior to the pandemic and COVID-19 has intensified this isolation. For this segment of the population, some adaptation has been possible, however for many people with IDD, adaptability to the disruption has been more of a challenge.  For many people with IDD, there has been insufficient back up and lack of a safety net for the in-person care and therapeutic services critical to their day to day existence, happiness, and quality of life. Where community is so important, community has undoubtedly been weakened by the pandemic.

Virtual Technologies

While many people globally have taken advantage of technologies to facilitate interpersonal connections during the pandemic, for people with IDD, screen based technologies are not always accessible given the digital divide or workable given specific physical or psychological challenges.  CDS Monarch leveraged screen based technologies for its Day Habilitation participants for the first six months of the pandemic, however reinstatement of in-person support and programming was paramount back in the early fall 2020 given reliance on in-person interaction and the importance of community. For people with IDD across the nation, comparable alternatives were difficult to find.  Virtual programming and discussion groups were partially effective however non-verbal individuals were disadvantaged.

The pandemic has ushered in new approaches for interactivity that have been percolating over the past few years.  Despite innovations in virtual reality technologies and virtual programming that became accessible and benefited a subset of the IDD population, these technologies have not been appropriate or effective for all IDD people.  Once the pandemic has subsided, many of these technologies may persist, but for many people with IDD, one on one or interaction or a group habilitation setting is irreplaceable.

With the IDD population, it is most often the case that physical contact with caregivers, loved ones and peers is critical in daily fulfillment and positive therapeutic outcomes.  Many individuals who returned to CDS Monarch Day Habilitation have stated that the lack of interaction with direct care professionals and peers was the most difficult challenge that COVID presented.

Telehealth

While the pandemic unleashed a new age of telehealth among the general population, it also revealed stark inequities in how telehealth may not deliver the same benefits to the IDD population.  Many people with IDD are not eligible for telehealth opportunities given socioeconomic reasons that account for the digital divide or specific physical or psychological barriers.  At CDS Monarch residences, many residents were forced to resort to telehealth.  For the IDD population, where body language may replace verbal cues, and physical examination is more critical, telehealth acted as a bridge but not an ultimate solution.  Telehealth has many advantages including accessibility when transportation is a barrier and frequent observation in patients’ home environment can be revealing as to the patient’s condition.  Medical experts seem to agree that exclusive reliance on telehealth is not a long term solution for most individuals with disabilities[1].

Monitoring the effects of medications by health care professionals is critical and cannot always be ascertained through telehealth methods.  Even astute caregivers may not always recognize the adverse effects of medications, whether subtle effects or even more conspicuous effects in health or reaction to a medication.  Some individuals with intellectual and/or developmental disabilities are able to advocate for their own health, however many are not which makes telemedicine more challenging.  Although telehealth has been an interim solution and effective in many scenarios during the pandemic, at least for the IDD population it cannot replace the importance of face to face consultation.

Education and Supported Employment Services

For school aged children, the pandemic has had a disproportionate negative impact on a population of children requiring special education that often demands nuanced physical contact, redirection, higher teacher/student ratios, interpersonal prompting and close attention to the structure of the environment[2].  These same factors may apply to job training programs, supported employment for adults with IDD, and any assistance for IDD in the general workforce. The shift to virtual learning in the spring, summer and fall of 2020 challenged the IDD population even more so than the general population.

Supported employment services including job training programs and assisted employment for adults with developmental disabilities regressed during the pandemic.  Unistel Industries, given its designation as an essential business, supplying spices and packaging other food to the military and other customers, experienced this regression firsthand.  After several months on hiatus, Unistel Industries restarted its employment training programs and welcomed its supported employees back to the Unistel manufacturing facility. As with CDS Monarch Day Habilitation, participants in these programs were thrilled to resume their training or employment and re-engage with peers within a very tight knit community.

Path Forward

Moving forward, there is a great need to equip people with IDD with the tools that much of the population enjoys and now truly relies upon more than ever. Access to the Internet via a computer, smartphone, or tablet is mandatory so that the IDD population is not further isolated or disadvantaged by the digital divide. There will always be a subset of the IDD population who, given specific conditions, will not benefit from technology and virtual connectivity.  For these individuals, in-person service must be prioritized.

Given the situation that parents and caregivers found themselves in during the past year, with loved ones experiencing greater isolation and less access to critical face to face service providers, it would be extremely beneficial for parents and caregivers to gain more focused training.  Parents and caregivers may be called upon again in the future to help deliver education and/or developmental therapies, playing a stronger supporting role to qualified personnel.

The disruption that the pandemic has instigated will forever impact society and life as we know it.  Services for people with IDD will be improved given learnings from the pandemic and  inequities that were revealed in digital access, communications and effectiveness of telemedicine.  More rigorous training of caregivers should be enabled, and safety nets should be mobilized so that the isolation experienced by the IDD population will not be repeated should a similar black swan occur.

[1] American Journal of Psychiatry, August. 28, 2020, The Impact of COVID-19 on Individuals with Intellectual and Developmental Disabilities: Clinical and Scientific Priorities, John N, Constantino, MD, Mustafa Sahin, MD, PhD, Joseph Piven, MD, Rylin Rodgers, BS, John Tschida, MPP, www.ajp.psychiatryonline.org

[2] American Journal of Psychiatry, August. 28, 2020, The Impact of COVID-19 on Individuals with Intellectual and Developmental Disabilities: Clinical and Scientific Priorities, John N, Constantino, MD, Mustafa Sahin, MD, PhD, Joseph Piven, MD, Rylin Rodgers, BS, John Tschida, MPP, www.ajp.psychiatryonline.org