Management and support of individuals with developmental disabilities during the COVID-19 pandemic.

Starting in late 2019 in China and expanding all over the world since early 2020, the COVID-19 pandemic has swept across the world, changing the daily routines of many people. Families' day-to-day routines have been disrupted, and this is even more true for households with one or more individuals with developmental disabilities. This disruption of daily routines may be especially challenging to cope with, as caregivers have to deal with both intensive caregiving needs and a disrupted work routine. In an attempt to curb the spread of the novel coronavirus, many services and businesses were suspended, or transited to online work to prevent unnecessary human movement. Unfortunately, that also implies that many individuals with developmental disabilities no longer have physical access to their specialized healthcare or therapy centers, resulting in delayed or less effective treatment.

Therefore, this special issue includes a collection of empirical studies, review and perspective papers which focused on how the pandemic has changed the current efforts, or necessitated the development of new assessment and intervention methods for individuals with developmental disabilities (i.e., any of the chronic developmental conditions characterized in DSM-5). These papers involve the study of new therapeutic arrangements as well as new technologies, and how they have transformed assessments and interventions in the context of developmental disabilities during the time of a public health crisis. We also collated articles that examined the impact of COVID-19 and discussed potential solutions and implications for future emergencies on closely related areas such as mental health, education and surrounding families of children with developmental disabilities.

The articles of this special issue are grouped in three main parts: (i) management of the situation; (ii) impact of the pandemic on the person with intellectual and/or developmental disabilities, (iii) impact of the pandemic on caregivers and families.

The initial article of the special issue is an opinion article written by Luckasson and Schalock (2020). The article emphasizes the importance of balanced decision-making to avoid taking unnecessary risks that may endanger the lives and wellbeing of individuals with intellectual and developmental disabilities. The challenging crisis during the pandemic have disproportionately placed individuals at heightened risk levels of negative societal reactions and physical, and psychological health. Therefore, the authors suggested greater vigilance in professional responsibility by taking a more balanced and holistic approach to ensure accountability and management of these individuals, while considering broad perspectives to understand the lives and wellbeing of people with intellectual and developmental disabilities. The adoption of these suggestions will increase the probability of regaining high quality support and services, minimize the loss of critical progress, and enable greater stability in a post-pandemic world as well as in other future social, political and financial crises.

The next 11 articles of the SI focus on aspects related to the management of the challenges arising from the COVID-19 pandemic. Araten-Bergman and Shpigelman (2021) focused on how family caregivers have interacted with and supported their relatives with developmental disabilities who are residing in supported accommodation during the pandemic. The authors showed that many family caregivers adopted remote communication technologies; however, these were not perceived to be effective in filling the gap created by reduced face-to-face contact. While families were able to provide emotional support and advocacy using digital technologies, they were limited in their ability to provide significant social support (Araten-Bergman & Shpigelman, 2021). Buono et al. (2021) described the clinical management of individuals with intellectual disability during the first outbreak of COVID-19 at the Oasi Research Institute of Troina (Italy) that became an important hotspot for infection and where 109 patients with different levels of Intellectual Disability (ID) tested positive for COVID-19. Clinical procedures as well as remote/in person psychological support services provided to people with ID and their families were divided into three different sections: Phase I (or Acute phase), Phase II (or Activity planning), and Phase III (or Activity consolidation). These multidisciplinary interventions put in place were customized. Participation in the activities of caregivers and other family members was also customized based on the main psychopathological characteristics of each patient.

While the first two articles in this section referred to the in-person management of the challenges arising from the COVID-19 pandemic, the next 9 articles focused on the use of technologies to support assessment and care of individuals with intellectual and/or developmental disabilities. Dahiya, DeLucia, McDonnell, and Scarpa (2021) presented a systematic review of technological approaches to assess Autism Spectrum Disorder Assessment in children and discussed the implications for the COVID-19 pandemic. Shawler, Clayborne, Nasca, and O'Connor (2021) carried out an exploratory study that aimed to coach caregivers to conduct the assessment and treatment process for a young man with developmental disabilities using an intensive-outpatient model via tele-health mode. Functional analysis procedures led to the development of a function-based treatment to reduce challenging behavior and increase functional communication. Caregivers demonstrated high procedural integrity across all phases of the study and found the intervention to be highly acceptable and effective (Shawler et al., 2021). White, Stoppelbein, Scott, and Spain (2021) aimed to understand the challenges faced by families of people with ASD from across the US, and their experiences using telehealth. Results indicate that impaired emotion regulation was a primary contributor of parent-reported stress for persons with ASD during the pandemic, while the loss of established structure and routine contributed to parental stress. Nearly half the sample reported using telehealth for the first time. Many caregivers were appreciative that telehealth permitted continuation of services but expressed concerns about limited effectiveness due in part to their children’s social communication problems (White et al., 2021). Scheffers, Moonen, and van Vugt (2021) assessed the quality of support and showed sources of resilience during COVID-19 measures in people with intellectual disabilities by professional carers. Specifically, professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients (Scheffers et al., 2021).

In the next article, McDevitt (2021) described an online parent education and training model for families of children with autism in China. Through the interactive virtual training sessions, parents were supported by continuous feedback on their home intervention and coached to cultivate support networks among themselves despite tensions arising from cultural differences and also to implement effective intervention strategies that were individualized and authenticated to their specific familial needs (McDevitt, 2021). Daulay (2021) described the experiences of mothers and efforts in implementing home education for children with autism, during the COVID-19 pandemic in Indonesia. The implementation of home education during the pandemic was less than optimal, due to the increase in maladaptive behaviors of the autistic children, low adaptability, the burden of caregiving, and emerging negative emotions (Daulay, 2021). The final three studies of this section focused on the management of individuals affected by sensory impairments. Specifically, Almusawi, Alasim, BinAli, and Alherz (2021) compared the disparities of health knowledge and practice surrounding COVID-19, if any, among hearing and Deaf or Hard of Hearing (DHH) individuals in Kuwait and Saudi Arabia. A multivariate regression analysis showed that both, the degree of hearing loss and use of sign language as the primary means of communication, were associated with lower scores. In addition, disparities exist in the use of health information sources, where DHH participants relied mostly on social media compared to the hearing group who relied predominantly on official government sources. Alqraini and Alasim (2021), using semi structured interviews, explored the challenges and support methods for Deaf and Hard of Hearing students during their distance education in Saudi Arabia. Deaf and Hard of Hearing students require various forms of ongoing support from both their families and schools to ensure that they succeed and benefit from their experiences. Battistin et al. (2021) described the activities of the Robert Hollman Foundation Distance Support Project for the blind and visually impaired children, an online process covering all aspects of support for the children and involving audio-video calls, videos and tailored-made multisensory material created specifically for each child’s need. A follow up after 5 months with parents and professionals highlighted high levels of satisfaction, especially for the continuity of the access to treatment even during the challenging times of the COVID-19 pandemic (Battistin et al., 2021).

The next section of the SI lists eight articles that focus on the impact of the COVID-19 pandemic on the life of persons with intellectual and/or developmental disability. Rosencrans et al. (2021) explored mental health problems and services available to individuals with intellectual and developmental disabilities during the COVID-19 pandemic in the United States and in Chile. Half of the sample in Chile and 41% of the sample in the United States endorsed increased mental health problems. Furthermore, approximately 15% of the sample in the US reported no longer receiving state developmental disability services. Panjwani, Bailey, and Kelleher (2021) investigated the relationship between COVID-19 and behaviors of children with ASD living in the United States. Stratifying by income level and food security status revealed disparities in the impact on overall behavior and most specific behaviors. Lower income (<$US50K) was associated with an increased risk of moderate-to-large impact on the child’s overall behavior. Food insecurity also significantly impacted this risk, even after adjusting for potential confounding factors (Panjwani et al., 2021). Mumbardó-Adam, Barnet-López, and Balboni (2021) employed an in-depth approach to study how children and adolescents with Autism Spectrum Disorder (ASD) and their families daily life and routines has been challenged from the COVID-19 Lockdown in Spain. Many families described that their children and adolescents with ASD adapted to the lockdown better than expected. Some families reported that their youth participated more often in families’ routines and were more communicative with their parents. Families had more time to qualitatively spend with their children to teach new skills such as autonomy or house care-related skills (Mumbardó-Adam et al., 2021). Navas, Amor, Crespo, Wolowiec, and Verdugo (2021) investigated, through a survey, the impact of COVID-19 and the response measures applied in Spain during the lockdown on people with intellectual and developmental disabilities. People living in specific settings had fewer natural supports, while those living with their family relied heavily on it. Although people with IDD have generally received the assistance they need during the lockdown, some differences were evident and related to the living arrangement of the person. Martínez-González, Moreno-Amador, and Piqueras (2021) analyzed the differences between the emotional states of a group of individuals with ASD and a neurotypical group both during and after the COVID-19 confinement. The study also examined the changes in autistic symptoms between a group of individuals with ASD who were confined during the COVID-19 pandemic and another group of individuals with ASD who were studied prior to the COVID-19 pandemic period. Martínez-González et al. (2021) showed how lockdown increases symptomatology and dysfunctional behaviors characteristic of ASD. Next, Lois Mosquera, Mandy, Pavlopoulou, and Dimitriou (2021) investigated the lived experiences of autistic adults and their social expectations before and during the first COVID-19 lockdown in Spain. Using a qualitative Reflexive Thematic Analysis, Lois Mosquera et al. (2021) highlighted lack of appropriate mental health support for the autistic communities during the pandemic. However, interestingly autistic adults also voiced their positive social experiences due to restrictions imposed during the pandemic. Critchley, Cuadros, Harper, Smith-Howell, and Rogish (2021), using a parent-sibling dyadic interview, explored how an individual with ASD can impact family dynamics during the COVID-19 pandemic in the UK. The data suggested a closeness within the families and an adoration towards the individual with ASD. Dyads were, to an extent, consumed by the diagnosis both presently and in the future, implicating the need for a stretch in services to support parents and neurotypical siblings. In terms of the first lockdown in the UK which added an extra layer of difficulty to the dyads’ work-life balance, there was still an essence of family cohesion (Critchley et al., 2021). Khan et al. (2021) explored the impact of COVID-19 restrictions on autistic individuals and their caregivers in Qatar. This study showed reduced levels of aggression in autistic individuals but an increase in care burden among their caregivers during the COVID-19 social restrictions, highlighting the need of supporting patients and caregivers alike.

The final section of the SI lists eight articles that focus on the impact of the COVID-19 pandemic on the life of caregivers and family of a person with intellectual and/or developmental disability. Tsibidaki (2021) explored anxiety, meaning in life, self-efficacy and resilience in university students belonging to families with one or more members with special educational needs and disability during the COVID-19 pandemic in Greece. Families having members with special educational needs and disability, although experiencing difficult situations and anxiety due to the unprecedented conditions of the pandemic, activate mechanisms, such as self-efficacy, meaning in life and resilience, to maintain their balance and mental health (Tsibidaki, 2021). Dhiman et al. (2020) described the mental health status and the change in perceived strain among caregivers during the COVID-19 outbreak in India. Caregivers who did not use tele-rehabilitation, along with a perception of it being a poor medium for rehabilitation, were at greater risks for poor mental health, whereas a negative perception on homecare therapy was strongly associated with higher psychological symptoms and strain (Dhiman et al., 2020). The psychological health of Iranian caregivers of children with Cerebral Palsy during the COVID-19 pandemic in Iran and associated risks during the lockdown period was investigated (Farajzadeh, Dehghanizadeh, Maroufizadeh, Amini, & Shamili, 2021). After controlling for demographic and clinical variables, burden (CDS) was found to significantly predict caregiver anxiety, depression and stress. Furthermore, several demographic characteristics (being married, low educational level and low income) were significantly related to high levels of anxiety (Farajzadeh et al., 2021). Bentenuto, Mazzoni, Giannotti, Venuti, and de Falco (2021) studied the psychological impact of COVID-19 pandemic in Italian families of children with neurodevelopmental disorders. Similarly to what emerged in Spain (Mumbardó-Adam et al., 2021), qualitative analysis showed that beyond the difficulties and worries arising during lockdown, most of the parents appreciated the opportunity of spending more time with their children and strengthening the parent-child relationship. Althiabi (2021) assessed attitude, anxiety and perceived mental health care needs among parents of children with ASD in Saudi Arabia during COVID-19 pandemic. Althiabi’s (2021) findings revealed that attitudes towards taking care of children with ASD were affected by parents' age and child's age, and mothers were more negatively affected. Furthermore, the anxiety of parents during COVID-19 was significantly higher than before the COVID-19 situation. It was found that parents' mental status during COVID-19 mediated the interaction between anxiety and perceived mental health care. Parents sought support from teachers, family members and therapists to deal with children with ASD during the pandemic outbreak (Althiabi, 2021). Alhuzimi (2021) investigated the stress and emotional well-being of parents of children with ASD in Saudi Arabia during the COVID-19 pandemic. The authors found that family ASD status (in particular, age and gender of child with ASD, and severity of his/her symptoms) had a significant impact on parental stress and emotional well-being. Moreover, parental stress and emotional well-being were negatively impacted by the frequency and usefulness of ASD support received during COVID-19 pandemic. These were also adversely impacted by the change in severity of ASD behaviors of the children with ASD. Finally, parental stress was found to have a negative impact on the emotional well-being of parents (Alhuzimi, 2021). Bozkus-Genc and Sani-Bozkurt (2022) used a qualitative phenomenology design to explore the perceptions of parents with children who have ASD during the pandemic in Turkey. The results showed that parents who were psychologically depressed expressed a desire to feel that they were not alone. Parents provided a number of suggestions and recommendations in hope of reducing these negative experiences by other parents. Iovino, Caemmerer, and Chafouleas (2021) conducted a follow-up after 6 months on the experiences of caregiver burden and psychological distress among caregivers of children with ASD and/or attention deficit hyperactivity disorder (ADHD) during the pandemic. Results reported by Iovino et al. (2021) indicated that caregivers of children with ASD/ADHD continued to report significantly higher levels of psychological distress and caregiver burden compared to caregivers of children without developmental disability. Counter to study hypotheses, decreased opportunities to engage in self-care as a result of the pandemic predicted higher levels of psychological distress and caregiver burden for caregivers of children without developmental disability, whereas only caregiver burden was moderated by self-care for caregivers of children with ASD/ADHD.

For this special issue, we have received many interesting and timely articles from authors that have studied intellectual and developmental disabilities during a very complicated period. With this final note, we want to thank all the authors that have contributed to this special issue as well as all the individuals with intellectual and developmental disabilities, their families, and their professional carers, without whom this special issue would not have been possible.

Note on language: in this editorial, we use certain terms (i.e. individual with ASD; autistic individuals, ASD) interchangeably to acknowledge cultural and scientific variability.