When considering the impact, outcomes, and consequences of the “lockdown” resulting from the COVID-19 pandemic, one cannot help but think of the opening paragraph from A Tale of Two Cities by the immortal Charles Dickens.
“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair.”
This paradoxical passage not only provides the perfect analysis of the disruptive state of affairs in 18th century England and France, but also perfectly describes the juxtaposition encountered, observed, and experienced in community group homes for individuals with intellectual and developmental disabilities (ID/DD) during a global pandemic.
For those of us serving people with ID/DD, we were tasked with providing an additional level of protection and care to the most vulnerable people in our communities. A cross-sectional study of 64,858,460 patients across 547 health care organizations reveals that having an intellectual disability was the strongest independent risk factor for presenting with a COVID -19 diagnosis and the strongest independent risk factor, other than age, for COVID-19 mortality (Gleason, et al., 2021). The increased risk to those with ID/DD necessitated strict adherence to protocols related to governmental “stay-at-home” orders, social distancing, and pervasive use of personal protective equipment. These precautionary measures for people with ID/DD meant a prolonged period of decreased access to social systems, suspension of job/work tasks, termination of community-based activities, and changes to support systems (Navas, et al., 2021).
Initially, common feedback from administrative personnel, advocate groups, and healthcare professionals indicated COVID-19 health and safety procedures were causing increases in mental health issues, increases in behavioral concerns, resulting in diminished skill maintenance, and a decline in global function for people with ID/DD. However, as interdisciplinary professionals (i.e., physicians, behavior analysts, direct support professionals) navigated the changes in service delivery systems and adapted to a “new normal”, an antithetical whispering was ushering out a year of darkness and illuminating a spring of hope.
The Pandemic World
People with ID/DD and their supports are not a monolithic group, and the response and reaction to the pandemic varied and changed in individuals over the course of the pandemic. (Keller, S. 2021.). To say, in a wholesale fashion, a group of people’s responses to the pandemic has been poor, or an individual’s response has been detrimental. is to overgeneralize and depersonalize the experience. All individuals have experienced a continuum of responses across time, settings, and personal characteristics during the pandemic. That is to say people’s emotional, psychological, and physical responses have changed and become varied at different points since the onset of pandemic precautions in the spring of 2020.
To draw from the biopsychosocial model, the initial lockdown measures and continued COVID-19 precautionary measures have impacted the integration of physical, psychological, and social dynamics that comprise the totality of all people, including those with ID/DD. The lockdown measures have meant, for a prolonged period, people with ID/DD have stopped working and participating in their communities, centers and services, and have had their routines interrupted (Hughes and Anderson, 2020). The cessation of work, community, and daily routines have impacted social systems, which have led to increased isolation and feelings of detachment. Decreased access to routine medical care (e.g., postponed medical appointments, changes in service delivery) have led to the exacerbation or onset of medical issues, which can impact physical and mental health. Mental health concerns have been at the forefront of concern, as the onset or exacerbation of symptoms of depression and anxiety have been noted across settings, time, and people. The lockdown measures have not only impacted one aspect of a person’s life with ID/DD, it has impacted all facets of the individual.
The acknowledgement and illustration of the negative impacts of the COVID-19 lockdown and sustained precautionary measures has been noted in mass media outlets, on conference agendas, and amongst caregivers since the onset of these measures. While it is plausible that changes in daily life due to the COVID‐19 pandemic might have increased the risk for incidents, positive reactions may also be possible (Schuengel, et al. 2020).
There are individuals with ID/DD who have shown improvement in a variety of areas (e.g., behavioral stability, psychiatric symptoms, quality of life) as a result of adhering to governmental “stay-at-home” orders and other health and safety measures restricting social interaction and community integration. A long-held, pervasive assumption is every person with ID/DD "thrives" in community settings, and socialization is a preferred activity. As the COVID-19 pandemic wore on, a pattern among some individuals developed that noted a reduction in problem behaviors, a decrease in psychiatric symptoms, and (surprisingly) instances of joy were being observed. In some individuals, the decrease in problem behaviors and psychiatric symptoms were leading to the justification for discontinuation of behavior analytic services, reduction or cessation of psychotropic medications, and a general reduction in the need for restrictive programmatic supports.
The Pandemic Person
To highlight the ways in which a person may have experienced positive impacts from the COVID-19 pandemic seems counterintuitive on the surface, particularly to note a person may have been happier during a lockdown. People with ID/DD have different experiences related to their social interactions, daily schedules, and engagement in leisure activities. The impact of COVID-19 precautions changed decades-long approaches to care that were fundamentally rooted in social interaction, daily schedules emphasizing community engagement, and leisure activities that incorporated both social and community involvement.
Individuals with ID/DD are more likely to exhibit poor social skills and routinely find themselves in situations with large numbers of people (i.e., day programs, community events), novel social scenarios, and interacting with people who do not feel comfortable around them. It is not uncommon for individuals with ID/DD to have difficulty with starting conversations, extending conversations, and/or having idiosyncratic social communication skills. These dynamics require a familiarity with the individual in order to achieve effective communication and social interactions. Additionally, the aforementioned characteristics can also lead to shortened, negative, and/or a decrease in the opportunity for social interactions in community settings.
The COVID-19 precautions, which led to decrease in social interactions and community involvement, shrunk the size and demands related to social systems for many people with ID/DD. The reduction in size of social systems, and associated demands led to a more predictable, manageable, and tolerable presentation of social engagement. The reduction of size of social systems may follow from suspending daily obligations such as work, freeing time for leisure activities and from decreasing numbers of people invading the privacy of group homes. (Schuengel, et al. 2020).
For individuals living in a residential group homes, COVID-19 precautions allowed for social systems where they had familiarity with all people they were interacting with (peers and staff), as well as the skills and requisite idiosyncratic knowledge to interact positively within these smaller social systems. This actually increased the opportunity for successful and naturally reinforcing social interactions.
Beyond social systems, COVID-19 precautions led to changes in daily routines. Pre-pandemic schedules were rife with task demands and instruction. The changes in daily scheduling led to lower stimulation, lower demand environments, which allowed individuals to have less strenuous and arduous daily schedules. There are many environmental/sensory reasons why the environments were felt to be inhospitable, such as loud and crowded work environments, the restriction of free movement in certain settings, and mandated, pre-selected activities.
In residential group home settings, daily scheduling can be dominated by ADL tasks, skill acquisition in work and residential settings, and pre-determined activities focused on socialization and community engagement. Upon awaking, many individuals are prompted to immediately engage in ADL tasks, which can be inherently difficult, given skill deficits. In some instances, they are then prompted to attend day programs or work settings where they are steadily prompted to engage in skill acquisition and/or work tasks for six to eight hours. Upon returning home, prompting-based tasks related to skill acquisition, task completion, and ongoing ADL tasks are continued.
A day in the life of a person with ID/DD is characterized by repeatedly engaging in difficult tasks accompanied by ongoing instruction (and correction!). At the end of the day, people with ID/DD are mentally, physically, and emotionally fatigued. The COVID-19 pandemic put an immediate halt to the excessive, continuous, and difficult task demands dominating the daily lives of individuals with ID/DD.
After examination of a person’s daily schedule and the acceptance a person is likely to be fatigued at the end of the day, it is not unreasonable to present the person with leisure activities. However, the presentation of leisure activities, which frequently involve socialization and community activities, can be daunting. Given possible skill deficits, engagement in community and social based activities can be difficult and require high demands from the individual. COVID-19 precautions have highlighted the need for individuals to have robust leisure skills that extend beyond community outings and social engagement to include independent leisure skills. Additionally, leisure skills for people with ID/DD should be expanded to include function-based activity scheduling across settings, people, and time, while being tailored to the individual’s preferences.
It should not be assumed that every person is desirous of leisure activities focused on socialization and community engagement. It is not uncommon, nor problematic, for a person to enjoy home-based activities and/or independent leisure activities. Mandating social and community-based activities can be antithetical to the person’s personal choice. Furthermore, if the person has difficulty engaging and participating in these environments, it can be a continuation of task demands, instructional periods, and, simply put, more work.
Interdisciplinary Responses
Behavior Analysis: The COVID-19 pandemic and associated precautions have put an unusual spotlight upon the behavior of people and the impacts of social isolation, changes in routines, and reduction in physical activity. All these factors create a risk of the appearance of challenging behaviors that negatively affect the emotional wellbeing and quality of life of people with ID/DD (Navas, et al., 2021). For those people living in congregate living settings, such as long-term care communities, mainstream media emphasized the behavioral and psychological impact of COVID-19 with headlines such as, “Distress in seniors surges amid coronavirus pandemic” (CNN. May 25, 2020). For those with ID/DD, the mainstream media focused on the lack of access to care, poorer healthcare outcomes, and increased mortality, as seen in the NPR article titled “COVID-19 Infections and Deaths are Higher Among Those with Intellectual Disabilities” (Shapiro, J., 2020).
As headlines flickered across screens through the fall of 2020, those in health and human service fields, were discussing the psychobehavioral impacts of lockdown precautions stretching beyond six months and through the upcoming winter. As discussions spread across disciplines, settings and caregivers, a common theme developed – behavior. “How was John coping with not seeing his family every weekend?” “What has Jane been doing since she can’t work?” “How will people react when they can’t socialize? What about skill development? And routines! And schedules!”
Predictably, an array of negative behavioral changes was observed among individuals with ID/DD confined to their group homes as a result of the COVID pandemic “lockdown”. Direct Support Professionals, behavioral analysts, as well as counselors and therapists reported dramatic increases in anxiety, stress, aggression, self-abusive behaviors, depression, confusion and isolation. The pandemic created strife, distress, and even decline in function for people with ID/DD. The impact of the COVID-19 precautions has been disproportionately strenuous for those with ID/DD, as the duration, parameters of, and rigidity of precautions has been more pervasive for this population (Constantino, et al., 2020). This has led to an increase in the likelihood of negative impacts, such as problem behaviors and psychiatric symptoms.
As the pandemic precautions continued through the winter of 2020 and into the new year, there were unlikely and unanticipated patterns surfacing. As interdisciplinary teams continued to work to address the changes in residents, employees, and caregivers, patterns began to emerge with some individuals showing improvement with previously identified problem behaviors decreasing and socially acceptable, desired behaviors increasing.
For example, MH is an individual who has a long history of having difficulty with appropriate social interaction with peers, which would often lead to raising his voice, cursing, making threats of physical harm, and occasional physical aggression. These behavioral concerns were heavily concentrated in the day program setting, with decreased frequency and intensity of these behaviors in the residential setting. In the past and during long-term periods of behavioral stability, MH successfully completed and enjoyed a job performing lawn care with his peers, with staff supervision and support, which was afforded to him through a day program specifically supporting individuals with ID/DD. This job allowed MH to have freedom of movement not only in his immediate environment, but also access to the reinforcing social attention in a smaller, more manageable environment that decreased the need for competition with peers for the desired reinforcement.
Prior to COVID-19 pandemic, MH moved to a new residence, which necessitated a move to a new day program that did not support employment opportunities with the type of job characteristics MH preferred and excelled. The new job was in a large building with approximately 100 other individuals, in a warehouse environment, where his piecemeal job demands he sit at a table, and work independently for approximately 6 hours per weekday. Although MH has room for improvement with his social skills, he is highly reinforced by social attention and would frequently leave his “designated area” to find peers to interact with. Verbal prompts from staff members and/or the resulting negative interpersonal interactions with peers led to routine instances of problem behavior.
Access to a community center with specific supports for his preferred type of job led to MH’s long-term success. The ability for MH to access a preferred job through disability specific resources, which supported his preferences, while being able to appropriately manage his needs was pivotal to his success. The decision to eliminate choice from MH’s employment led to an increase in behavioral instability. The means of eliminating the stress of the non-preferred job and setting was not rooted in MH’s choice, but in pandemic precautions that removed known antecedents.
Behavior data collected from October 2019 to April 2021 for targeted and non-targeted problem behaviors (as indicated) shows a clear reduction in all aforementioned problem behaviors. For the three months preceding the COVID-19 pandemic (December 2019, January 2020, and February 2020), MH averaged 9.67 documented behavior incidents per month. For the three months after the initial COVID-19 lockdown in March 2020 (April, May, and June 2020) MH averaged 1.67 documented behavior incidents per month. The next quarter (July, August, September 2020) exhibited a slight increase in the average number of documented problem behavior incidents with 3.33 per month. The next quarter (October, November, and December 2020) exhibited a reduction in the average number of documented problem behavior incidents with two per month.
MH returned to a staggered, part-time day program attendance in February 2021 and full time in March 2021. The first quarter of 2021 has shown an increase in the total number of problem behavior incidents with an average of 5.67 per month. The total number of documented behavior incidents for March 2021 was nine, which is slightly less than the pre-pandemic average of 9.67. Preliminary April 2021 data indicates 11 total documented incidents of problem behavior with the onset of a new behavioral concern of sleeping at his work station.
The interdisciplinary team has discussed the following dynamics, which may have accounted for MH’s behavioral progress during the COVID-19 pandemic precautions:
- Difficulty socializing-smaller, more predictable social systems have allowed for increased ease of navigating social interactions
- Over stimulation in work setting
- Long periods of task demand, instruction
- Not having to perform a non-preferred job task in a non-preferred setting
- Forced community integration and socialization
Psychiatric: The unforeseen pandemic quarantine served to validate long-held suspicions that a number of individuals with ID/DD tend to thrive and live happier lives when not put in situations that force them to engage in community-based activities, mandated job attendance, and social focused leisure activities. Psychiatric teams serving adult individuals residing in community-based group homes, found some individuals had significantly less physically aggressive (PA) and/or self-injurious behaviors (SIB) when remaining in their residences during the quarantine. In some cases, these psychiatric teams were able to reduce psychotropic medications. Conversely, these teams continued medications for some individuals in anticipation of their return to community-based day programs. The teams were concerned if medications were reduced, the behaviors would re-emerge once the day program schedule resumed.
The contraindications of medication reductions due to specific settings clarified the concept that individuals may be medicated in order to meet the demands of community integration and job participation. Clearly, this is juxtaposed to the therapeutic goals for the individuals, specifically as outlined by person centered planning, in addition to state and federal regulatory mandates. As a result, there needs to be an increase in interdisciplinary team discussions to focus on alternate plans for individuals who are clearly stating through their behaviors that they prefer not to engage in some community-based activities. The discussions are ongoing and continue to be difficult, given providers agencies continue to struggle with what the “new normal” will be, in conjunction with demands from state and federal mandates.
To illustrate the negative impacts of forced community integration that have been highlighted by COVID-19 precautionary restrictions, the case of CA, who is a 30-year-old female, diagnosed with moderate ID, autism, and has congenital blindness will be discussed. CA possesses adequate receptive communication skills to follow requests, but her expressive communication is limited to short phrases.
She has a long history of PA (striking others) and SIB (hitting her face and pressing on her eyes with her hands), which has resulted in injury to herself and others in the past. Additionally, these behaviors were also accompanied by stripping off her clothes, screaming, and general disruption to the environment. Behavioral data clearly indicates a greater frequency when she was in the day program setting versus in her home. Pre-pandemic, the behaviors she exhibited at the residence often occurred in the early morning when she was being prompted to get dressed and during transport to the day program.
At the most extreme, she was exhibiting an average of 200+ incidents of SIB per month and 40+ instances of PA per month. At the most recent quarterly psychotropic medication review in spring 2021, the behavioral data revealed for the last six consecutive months she has had fewer than 70 incidents of SIB per month and less than 20 incidents of PA per month.
She enjoys listening to music in her room, sensory integration activities, and outdoor walks preferably with the 1:1 attention of a staff person. She has been able to engage in these activities more often during the pandemic. Although SIB and PA persist, the PA is almost half of the pre-pandemic rates and SIB is only one third of the pre-pandemic frequencies. Even in the face of noted improvement in the absence of mandated day program attendance and community integration, the psychiatric team has opted against medication reduction, given she will be returning to the day program in the near future.
Direct Support Professionals
The clinical perspective of behavior analysts and psychiatrists allows for data-driven analysis of the impact of the COVID-19 pandemic on individuals with ID/DD. Members of the interdisciplinary team of critical importance are direct support professionals (DSPs), who are the backbone of the service delivery and support systems for those living in residential group home settings. Although largely anecdotal, information obtained through discussion, input in team meetings, and working alongside DSPs has illuminated experiences that mimic the individualized and personal responses of people to the COVID-19 pandemic.
Direct Support Professionals fall within the large categorization of healthcare providers whose job descriptions thrust them to the front lines to fight an invisible threat. Access to personal protection equipment was often times limited, long-standing staffing shortages were amplified, and the constant companions of confusion and worry shadowed them through every shift. The insights from these members of the interdisciplinary team are invaluable in identifying characteristics amongst the ID/DD population in response to the COVID-19 pandemic.
Conversations with DSPs have yielded varying opinions on the responses of the individuals living in residential group home settings. The most common difference in responses was related to the level of care the DSP primarily worked in. DSPs who worked with individuals who had more robust skill sets and living in settings allowing for greater independence (e.g., apartments), tended to express increased negative impacts on individuals with ID/DD. DSPs who worked with individuals requiring the highest levels of care reported less pervasive, but not non-existent, negative impacts from COVID-19 restrictions.
The greatest continuum of responses from DSPs, based on setting, were related to individuals with more moderate skill deficits who were more likely to be independent in activities of daily living (e.g., bathing, grooming, eating), but need assistance with executive functioning skills, such as problem-solving, organization, and planning. DSPs reported varying differences within this subset of individuals, but also varying responses within the person. They noted the person could have difficulties comprehending the restrictions, difficulty adapting to the changes in routine, and difficulty with novel activities and task demands – to name a few characteristics. Interestingly, and as Dr. Seth Keller noted previously, these characteristics would change throughout the course of the pandemic (Keller, S., 2021).
Another common theme discussed by DSPs regarding responses of persons with ID/DD to the COVID-19 pandemic was what the person’s preferences were. Did the person enjoy their job? Did they enjoy social interactions? Did they have community activities they routinely participated in (e.g., religious services, romantic relationship, home visits)?
A DSP interview conducted by a Board-Certified Behavior Analyst (disclosure: co-author) in May 2021 with a House Manager working in residential group home highlighted the difference within individuals living in the same home, which focused on activity preferences. The interviewee described a scenario where three (of the four) individuals living in a home preferred a more “relaxed home-life” that focused on their independent leisure skills, such as watching movies, playing video games, and community activities (e.g., going out to eat, going to flea markets). The other individual was highly reinforced through social interaction and robust activities, which included having a girlfriend, having a job (supported through the day program), and socializing with his peers. The interviewee highlighted the dichotomy within this home of responses to the pandemic that was not rooted in the reduction/cessation of problem behavior, but in overall happiness. The gentlemen who preferred a more relaxed approach to social and community engagement appeared to have an increased quality of life during the pandemic precautions.
An observation of the characteristic(s) of the type of individual who DSPs were more likely to note behavioral and psychiatric improvement during the COVID-19 pandemic were individuals who were qualified as “high-management”. The definition of high management was being a person who historically exhibited more frequent, higher intensity behaviors that were more likely to jeopardize the health and safety of themselves or others.
A DSP interview conducted by a Board-Certified Behavior Analyst (disclosure: co-author) in May 2021 with a House Manager working in residential group home qualified as high-management expressed “surprise at how well our men have done (during the COVID-19 pandemic).” One interviewee noted the approach to care during their 17 years in the field has been focused in training, community involvement, and socialization. The interviewee continued to say, “our guys don’t want to do all the stuff (we are told to do with them).” The context of this person’s comments were in the midst of a discussion about activity restriction as a result of COVID-19 precautions, and how staff worked to continue to allow access to preferred items and activities—such as going to drive-thru restaurants, car rides, and making lists for certain stores so staff could go and access needed/wanted items.
Over the course of several weeks in May 2021, these DSP interviews identified several themes and hypothesized reasons for the differences between individuals, settings, and experiences as being the following:
- Ability to comprehend the gravity of the global pandemic
- How significantly pandemic restrictions impacted day-to-day life of the person
- Skill-sets of individuals allowing for adaptation and changes
- Personal preferences for schedule, job/work participation, and leisure activities.
Person-Centered Planning, HCBS Final Rule, and Pandemic Restrictions
The prevailing fundamental approach to service provision in the field of ID/DD is person-centered planning. This now-ubiquitous approach is best described as “being driven by the person receiving services, choosing who participates in the planning process and the delivery of services, as well as individually identified goals and achievement of outcomes in the most integrated community setting. Services should be delivered in a way that reflects the person’s individual choices and contributes to their overall health and welfare (TN DIDD, 2021).” This approach has been cemented as the philosophical bedrock for all service providers through the CMS Home and Community Based Services Settings Rule, also referred to colloquially as the “Final Rule.”
The HCBS Final Rule can be conceptualized as the minimum requirements set forth by CMS for both residential and day service providers for individuals whom Medicaid pays for rendered services. In brief summation, the HCBS Final Rule seeks to ensure that recipients of Medicaid services have a choice in all aspects of their lives, their rights are protected, and have access to the community in the same fashion as citizens without disabilities.
The underlying assumption for the development and implementation of the HCBS Final Rule indicates the best place for all persons with ID/DD to experience life is in the most integrated community settings available. After completing a literature review of 61 studies of the impacts of deinstitutionalization of people with intellectual and psychiatric disabilities, Bredewold, et al. noted that it is not clear if people living in community settings are experiencing real inclusion (2018). A federal mandate removing access to community centers with pervasive access to necessary adaptive equipment, leading to fractured health care service provision, and forced community integration can be contradictory to person-centered goals of decisions “contributing to the overall health and welfare (of individuals)”, but also the HCBS Final Rule premise of “optimizing autonomy and independence in making life choices.” Furthermore, this all-encompassing assumption propagated by the HCBS Final Rule has been exposed as too broad of a “brush stroke” during the COVID-19 pandemic, as some individuals have shown improvement in not only behavioral and psychiatric stability, but also in their quality of life and overall happiness, through the reduction of forced community integration.
Criticisms
The two main points of this article state the HCBS Final Rule is not an all-inclusive approach that is effective for ensuring a true person-centered approach to supporting all individuals with ID/DD, in addition to noting that the COVID-19 pandemic and associated precautions was not responsible for universally poor outcomes for all people with ID/DD. Although these are not novel, revolutionary ideas given the whispers amongst service providers and interdisciplinary professionals, the statements of this article do bring us back to the dichotomy illustrated by Mr. Dickens, “it was the age of wisdom, it was the age of foolishness.”
These issues have been whispers for many years, as they are controversial and perceived as being a promotion of “institutionalism”. These ideas are not indicative of a desire to return to horrors revealed to the world through the images such as those of Willowbrook State School in the 1970s. The need to ensure people with ID/DD have equitable access to healthcare and employment, are free from discrimination, and afforded their unalienable rights is an assertion that elicits cohesion and solidarity among all those working with and serving those with ID/DD. However, these minimal standards can be achieved in manners beyond the HCBS Final Rule where specialized services, community centers, and residences for individuals with ID/DD are not inherently exclusionary, non-preferred, or inadequate. One can simply look to the socially accepted long-term care service providers (e.g., aging demographic) for evidence of the approach of caring for individuals with similar needs within a specific demographic.
Additionally, recognizing that not every person with ID/DD is desirous of daily schedules and leisure activities rooted in community involvement and socialization is not indicative of poor service provision. A common retort to the views expressed in this article can be surmised by "If your individuals are not thriving in the community, it's because you (as a provider) don't have the skills, imagination, or vision to provide them with the optimal situations for them to find their place.” Making the assumption that the true desire of people with ID/DD to be subjected to forced community integration is in direct conflict with the stated goals of person-centered planning and the resulting federal mandates outlined in the HCBS Final Rule. Too often, the person-centered choice is decided by well-meaning professionals and advocates who perceive the “community” is best for everyone.
The lasting purpose of the statements outlined is not to seek to dismantle a fundamental approach and service delivery system which works for so many, but simply to revisit our pledge for “self-determination.” As service providers, we all possess a progressive outlook which seeks the highest quality of life for those with ID/DD. We are simply seeking to illuminate and revisit the prevailing notion that every person with ID/DD benefits or, more important, desires the wholesale enforcement of forced community integration.
Future Considerations
This article examines and explores the phenomenon of psychobehavioral stability and global progress of some individuals with ID/DD during the COVID-19 pandemic. The examination of the impacts of COVID-19 lockdowns and sustained precautionary measures has highlighted the unintended consequences of forced community integration. These consequences can include, but are not limited to, poor social outcomes, increased isolation, decreased access to necessary healthcare, a decline in global functioning, and reduced quality of life for the person. As a community of service providers, the lessons learned from the COVID-19 pandemic may present more constructive ideologies which are more diligent in the provision of services to address individualized need predicated by actual choice.
Beyond the identification of the divergent behavioral repercussions of the COVID-19 pandemic, this article is a call to action to reexamine what we think defines a meaningful life for people with complex disabilities. During the pandemic we have learned to anticipate the full spectrum of multiple responses in a stressful situation, but it has also highlighted that not all sweeping changes, believed to improve outcomes, result in global positivity for all participants. Lastly, we, as a community of service providers, should revisit person-centered thinking and verify that it centers on the authenticity of the person with the goal of promoting real choice.
As we conclude, and since it has not been referenced in the body of this article, readers may have overlooked or discounted the title relating to Thalia and Melpomene. This was not an oversight but the decision that it would be best served as a parting message. Thalia and Melpomene are better known as the theatrical masks depicting comedy and tragedy. They became part of the theatre in ancient Athens where they helped actors to clearly reflect and project their emotions. The large faces and exaggerated expressions helped them convey their emotions to all the open-air theatre goers, including those seated far from the stage. The mask of the smiling Thalia was the muse of comedy while the frowning Melpomene was the muse of tragedy. Of particular interest is that the masks are always portrayed together. The two masks represent the two basic emotions of joy and sorrow. We believe this is symbolic of the two distinct emotions displayed by individuals with intellectual and developmental disabilities as observed and reported during the recent and ongoing COVID-19 pandemic. We have seen both emotions displayed, exhibited and addressed, depending on individual personalities, resilience, personal choices, supports, response to changes and accommodations in altered routines, settings and goals.
Like theatre-goers who can freely choose to attend a comedy or tragedy, we feel that the greatest tribute to personal choice and the jewel of “person centered planning” is for it to be truly person centered.
ABOUT THE AUTHORS:
Ley Linder is a Board-Certified Behavior Analyst and a South Carolina DDSN approved provider of Intensive Behavior Intervention services. He has a Master of Arts in Gerontology from Appalachian State University, as well as a Master of Education, with an emphasis in Applied Behavior Analysis, from Arizona State University. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with criminal offenders with intellectual disabilities. He is also a regional trainer for the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and is on the NTG Advisory Board. In addition to behavior analytic work, his experience includes being a direct support professional in long-term care settings, previously licensed long-term care administrator in North Carolina, outpatient rehabilitation clinic management, and CRCF management.
Dr. Rick Rader is the Director of the Habilitation Center at the Orange Grove Center in Chattanooga. He serves as a Presidential appointee to the National Council on Disability as well as being elected as the President of the American Association on Health and Disease. He serves as the Editor in chief of Exceptional Parent Magazine and has published over 300 articles in the area of health and disability. He is the National Medical Advisor to the National Alliance for Direct Support Professionals, and is a past president at the American Academy of Developmental Medicine and Dentistry. He is board certified in developmental medicine and is a member of the Medical Advisory Committee at Special Olympics International. He is the founder of the Orange Grove Center for the Study of Joy in People with Intellectual Disabilities. He has been an advisor to five former US Surgeon Generals in the area of health and disabilities.
Anita Linder is an ANCC accredited Adult Nurse Practitioner in primary care with a Master of Science in Community Mental Health Nursing from the University of South Carolina. She has more than 30 years’ experience in the field of ID/DD, with nursing experience spanning roles and settings, including starting as a staff nurse, advancement to Director of Nursing, and more than 20 years as a Nurse Practitioner. Her professional focus has included the community and facility-based ID/DD population, as well as geriatric psychiatric consultation to skilled and assisted living communities. In addition to clinical positions, she was the owner of a quality enhancement consulting firm for residential programs serving individuals with ID/DD for 15 years. Her firm provided quality assurance services to community-based group homes, as well as large state-run facilities in South Carolina, to ensure compliance with state and federal regulatory entities. Currently, she provides psychiatric services to community-based programs for individuals with ID/DD, as well as to those living in state run facilities in South Carolina.
References
Bredewold, F., Hermus, M., & Trappenburg, M. (2020). ‘Living in the community’the pros and cons: A systematic literature review of the impact of deinstitutionalisation on people with intellectual and psychiatric disabilities. Journal of Social Work, 20(1), 83-116. https://www.researchgate.net/publication/ 327054200_%27Living_in_the_community%27_the_pros_and_cons_A_systematic_literature_review_of_the_impact_of_deinstitutionalisation_on_people_with_intellectual_and_psychiatric_disabilities
Constantino, J. N., Sahin, M., Piven, J., Rodgers, R., & Tschida, J. (2020). The impact of COVID-19 on individuals with intellectual and developmental disabilities: Clinical and scientific priorities. American Journal of Psychiatry, 177(11), 1091-1093. https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.2020.20060780
Gleason, J., Ross, W., Fossi, A., Blonsky, H., Tobias, J., & Stephens, M. (2021). The devastating impact of Covid-19 on individuals with intellectual disabilities in the United States. NEJM Catalyst Innovations in Care Delivery, 2(2). https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051
Hughes, N., & Anderson, G. (2020). The experience of the COVID-19 pandemic in a UK learning disability service: lost in a sea of ever changing variables–a perspective. International Journal of Developmental Disabilities, 1-4.
Navas, P., Amor, A. M., Crespo, M., Wolowiec, Z., & Verdugo, M. Á. (2021). Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective. Research in Developmental Disabilities, 108, 103813. https://pubmed.ncbi.nlm.nih.gov/33271448/
Schuengel, C., Tummers, J., Embregts, P. J. C. M., & Leusink, G. L. (2020). Impact of the initial response to COVID‐19 on long‐term care for people with intellectual disability: an interrupted time series analysis of incident reports. Journal of Intellectual Disability Research, 64(11), 817-824. https://pubmed.ncbi.nlm.nih.gov/32954592/
Tennessee Department of Intellectual and Developmental Disabilities. “HCBS Final Waivers Rule”. May 27th, 2021 https://www.tn.gov/didd/for-consumers/hcbs-waivers-final-rule.html https://www.cnn.com/ 2020/05/25/health/seniors-distress-depression-coronavirus-pandemic/index.html
https://www.npr.org/2020/06/09/872401607/covid-19-infections-and-deaths-are-higher-among-those-with-intellectual-disabilities
Read the article here.