Living in a segregated community? Interaction between families and service organizations supporting people with intellectual disabilities during the COVID-19 pandemic

Abstract

Summary

Individuals with intellectual disabilities who might have been previously placed into segregated institutions now live independently in the community, supported by the necessary community care services. Nevertheless, social inclusion can be deemed successful only if they can positively interact with the various microsystems of the community. The disruption of social service provision due to the COVID-19 pandemic allowed us to evaluate other systems of support in the community. By adopting a bioecological perspective, qualitative methods are used to examine the interactions between people with intellectual disabilities and their social environment during the pandemic primarily based on focus group sessions with 17 social workers and 12 caregivers.

Findings

Three overarching themes are identified through a thematic analysis: (1) limited social ties with the community that could provide support; (2) professional support as the main source of assistance; and (3) limited resources on how to care for people with intellectual disabilities.

Applications

The results show that unilateral systems of support with limited participation of other systems lead people with intellectual disabilities to live segregated lives, even though they reside in the community. To fully realize the right of inclusion in society of all people with intellectual disabilities, further efforts are required to promote informal social care for people with intellectual disabilities. There is a need for a shared-care model that provides care in the community by the community through the establishment of neighborly relations and expansion of the social networks of people with intellectual disabilities.

Introduction

Intellectual disability is defined as a condition where an individual experiences significant impairments in both intellectual functions and adaptive behaviors (British Psychological Society, 2015; World Health Organization, 2008). Individuals with an intellectual disability often exhibit challenging behaviors (Emerson et al., 2001), with about 30% experiencing mental health comorbidity (Cooper et al., 2007; Kerr, 2004).

The COVID-19 pandemic has greatly altered community living for the general public (Banks et al., 2020). This is particularly true for people with intellectual disabilities. Social distancing measures and lockdown restrictions worldwide have resulted in the suspension of services provided by day care centers, the reduction or absence of routine activities in the community, and limited access to public facilities, all of which have affected the mental health of people with intellectual disabilities (Doody & Keenan, 2021). These individuals have been particularly susceptible to mental health issues during the COVID-19 pandemic, especially during periods when face-to-face psychological interventions and the delivery of mental health services were limited (Courtenay & Perera, 2020). During lockdowns, there was an increase in medication interventions, total consultations, and involvement of multidisciplinary teams to manage the mental health and behavioral issues of those with intellectual disabilities (Rauf et al., 2021).

While restrictions on social activities are known to intensify declines in the functioning capacity of people with intellectual disabilities, evidence suggests that reduced institutional support also impacts their family, who find it very difficult to balance work, domestic life, and caregiving tasks (Wos et al., 2021). Nonetheless, little is known about how these families and the organizations that provide support services to people with intellectual disabilities have coped with the changes in the environmental and social circumstances during the COVID-19 pandemic (Doody & Keenan, 2021). What concerns do they have? What difficulties have they encountered? This study applies a bioecological perspective to analyse the experience and interaction of these groups during the COVID-19 pandemic and the impact of the pandemic on people with intellectual disabilities. This investigation informs the current literature by providing an updated review of community care services delivery in an East Asian developed economy.

Background

This is an important question because, prior to COVID-19 pandemic, the shift of care from hospitals to community-based settings (Kunitoh, 2013) was hailed as a milestone in social care policy for people with intellectual disabilities after the World War II (Mansell & Beadle-Brown, 2010; Mansell & Ericsson, 2013). This movement was based on two developments in social care policy: the Scandinavian model of normalization proposed by Niels Bank-Mikkelson and Bengt Nirje in the 1960s, which recognized full and equal rights for people with intellectual disabilities, and the further expansion of the concept of normalization to social integration and opposition to institutional segregation in the 1970s by Wolf Wolfensberger (Simpson, 2018). As a result, recent decades have witnessed the closure of hospitals and the search for a new model of community care (Carpenter, 2021).

Generally speaking, increased social contact (Dusseljee et al., 2011) and reduced social distance (Ouellette-Kuntz et al., 2010) have increased community involvement, which raises the possibility of social inclusion for people with disabilities. Nonetheless, living in the community, although a precursor for social inclusion, does not necessarily guarantee inclusive living and community participation (Bigby et al., 2018). Other factors, including the characteristics of individuals and their respective neighborhoods, the attitudes of professional care staff, and government policies, also affect how people with disabilities are included in the community (Overmars-Marx et al., 2014).

Accordingly, the effect of living in community-based settings with real inclusion in the community remains uncertain (Bredewold et al., 2020). Particularly, it is worth noting that there is a lack of consensus on the definition and conceptualization of social inclusion (Simplican et al., 2015). In general, participation, connectedness and a sense of belonging, as well as citizenship and rights are recognized as the three overarching elements (Cordier et al., 2017).

Hence, the development of informal social relationships and social support systems are regarded as the key pathways to achieving social inclusion (Terry & Townley, 2019). Circles of support and their subsequent variations, microboards, peer-based approaches, and programs that enhance social competencies and befriending strategies are the four principal methods employed by community care service organizations to facilitate the establishment of natural and social support systems that promote independent living (Duggan & Linehan, 2013). Therefore, service provision organizations, professionals, families, and natural support networks are the social support systems that determine the level of inclusion that an individual enjoys in the community (Fullana et al., 2020).

Despite the efforts of community care service organizations, a number of studies have identified hurdles that people with intellectual disabilities face when attempting to integrate into the community (Bredewold et al., 2020). They have also experienced feelings of segregation and exclusion despite living in the community (Merrells et al., 2019). Although people with intellectual disabilities no longer live in large institutions in most developed countries, such as the United Kingdom, Canada, and the United States (Beadle-Brown et al., 2007), only a few service providers have standardized policies on social inclusion in neighborhoods (Boland & Guerin, 2022). This is important because, for example, if community services were to replicate the features of institutional life, they would restrict the ability of people with intellectual disabilities to live independently in the community and, by extension, their interactions with their neighbors (Bredewold et al., 2016). Specifically, it remains unclear whether the role of support staff in service organizations has been successfully adapting to this new model of care, as paid support staff tend to usually focus on their role of delivering care to their clients (McConkey et al., 2016) and may have paternalistic instincts (European Union Agency for Fundamental Rights, 2012).

On the other hand, family members who are responsible for the care of people with intellectual disabilities and support their independent living arrangements also struggle with their independence (Terry & Townley, 2019). This, in turn, doubles the burden on family members who are responsible for care giving, which has often led to increased stress and worsening mental health (Chan & Fung, 2022). This situation is exacerbated by the onset of the pandemic. Furthermore, mere participation in community-based activities does not necessarily bring about meaningful social contact with the community that facilitates social inclusion (Bigby et al., 2018).

There is a large and growing body of research that is exploring the social participation of people with intellectual disabilities (Dusseljee et al., 2011; Taylor-Roberts et al., 2019), their quality of life (Rand & Malley, 2017; Van Heumen & Schippers, 2016), and public attitude toward people with intellectual disabilities living in the community (Robertson et al., 2005; Scior et al., 2020). However, studies in the literature that explore interactions between people with intellectual disabilities and different community stakeholders, including social service organizations and the community which impact the level of social inclusion, remains limited (Wos et al., 2021). Therefore, even before COVID-19 emerged, there is a gap in the existing literature on the experiences of people with intellectual disabilities living in the community with supported care for social inclusion.

Bioecological perspective and social inclusion

Social inclusion comprises a series of complex interactions between individuals and environmental factors (Cobigo et al., 2012). At the core is the interplay between interpersonal relationships and community participation. Understanding this process involves analyses at a number of ecological levels, including the individual, interpersonal, organizational, community, and sociopolitical levels over time. Therefore, a study of social inclusion entails evaluation of the behavior and development of individuals, which are shaped by their ever changing environments and through a process of reciprocal interaction over time. Based on this understanding, the bioecological perspective in Bronfenbrenner (1977, 1999) is applied in this study. Previously, Simplican et al. (2015) also conducted a study on social inclusion by applying a bioecological understanding of human behavior and development.

The bioecological perspective of social inclusion is consistent with recent developments in the field of disability studies. Since the 1980s, intellectual disability is no longer considered to be a static condition, but rather, conceptualized as the manifestation of the interactions of people with intellectual disabilities with their environment (Luckasson & Schalock, 2013). Following this argument, the ability of people with intellectual disabilities to function can be improved through the coordination of a system of support over time. Therefore, the bioecological model has also been applied in disability studies to investigate systems of support (Schalock et al., 2010 ; Shogren & Turnbull, 2010).

The bioecological model (Bronfenbrenner, 1977, 1999) argues that the development of each individual is transactional and influenced by his or her interactions with the different elements of his or her environment. This environment comprises the microsystem (i.e., the immediate social setting that comes into direct contact with an individual during particular activities and situates him/her in particular roles) and “a nested arrangement of structures” (Bronfenbrenner, 1977, p.514) that include the mesosystem, exosystem, and macrosystem. The mesosystem represents the interrelations among the microsystems. The exosystem include elements that extend to other formal and informal social structures beyond the immediate environment that do not contain the individual yet influence him/her by affecting the microsystem. Finally, the macrosystem is the culture or subculture that includes larger societal factors that impact the individual and all of the other systems that surround the individual.

When applying the bioecological model to disabilities studies, including an adaption of the bioecological model—the competence–environmental press model (Lawton, 1999), the various systems in the environment may cause different types of adaptive behavior of individuals, which correspond to their ability to accommodate changes. Hence, an optimal fit between the individual and their environment is imperative for him or her to function adequately in this specific environment (Mouchaers et al., 2022).

With that in mind, this study seeks to provide a review of community care services by examining the experiences of people with intellectual disabilities who are living in the community with supported care during COVID-19. Specifically, this study investigates the interactions of various groups that provided supported care during the pandemic. The bioecological model (Bronfenbrenner, 1977, 1999) as well as the competence–environmental press model (Lawton, 1999) frame the methods to examine how families of people with intellectual disabilities and the organizations that provide support services to people with intellectual disabilities who are living in the community have adapted during the COVID-19 pandemic.

This perspective acknowledges the role of the environment in shaping the behavior of individuals. Rather than viewing the various subsystems independently, this perspective considers their interactions in the community. By exploring the adaptations of individuals, the interactions between people with intellectual disabilities and their social environments, including families, social service organizations, and the community, during the COVID-19 pandemic can be elucidated. Therefore, this study focuses on the behaviors and actions taken by these various groups while receiving and providing supported care.

Methods

Research context

The data for this study are collected in Hong Kong. Since social and community integration was endorsed as an objective of rehabilitation in the first Rehabilitation White Paper in 1977 (Hong Kong Colonial Secretariat, 1977), enhancing community care services that would enable persons with disabilities to live in the community has remained a strategic direction of social services for people with disabilities in Hong Kong (Rehabilitation Advisory Committee, 2020). According to the 2021 census, the majority (about 85%) of people diagnosed with a disability reside at home in the community (Census and Statistics Department, 2021). There is a wide range of community support services in Hong Kong, including those that are center-based or home-based, respite care, caregiver assistance, and financial subsidy services (Chan et al., 2022).

Focus groups

Ethics approval was obtained from the affiliated institution of the second author. Two rounds of focus groups, with four sessions in total, were conducted in April and May 2021, when the fourth wave of the COVID-19 pandemic had been largely contained in Hong Kong. In addition to social workers, caregivers were included as participants because their feedback on their experience with service delivery has been found to reduce disparities in access and increase their engagement in community support services (Pinkerton et al., 2022).

A total of 17 social workers and 12 caregivers attended the focus groups. All of the focus group participants received an invitation from a social service organization according to and screened by the inclusion criteria of this study. Four of the social workers are employed in residential services, two in community support services, nine in day training services, and two in vocational training services. Eleven are female and six are male. The interviewees have an average of 7.4 years of work experience in their organization. All of the interviewed caregivers have a family member with an intellectual disability who has been using the rehabilitation services of the involved social service organization for at least 1 year. The interviewed caregivers are mothers, fathers, and sisters of the family members with the disability. Of the 12 caregivers, 10 are female and two are male. Six of the family members use a day training service, four use a residential service, and two use a vocational training service. Tables 1 and 2 summarize the profiles of the participants.

Table 1.

Profiles of social workers.

Social worker (n = 17)	Unit	Gender	Years of working in the organization	Participated in focus group with family members and caregivers
SW1	Residential	F	12 years and 7 months	N
SW2	Day	F	9 years and 4months	Y
SW3	Day	F	12 years and 9 months	N
SW4	Vocational	F	4 years and 5months	Y
SW5	Residential	F	25 years and 7 months	N
SW6	Residential	F	1 year 8 months	N
SW7	Day	M	4 years and 5 months	N
SW8	Day	F	2 years and one month	N
SW9	Day	M	24 years and 2 months	Y
SW10	Residential	F	11years and 3 months	N
SW11	Vocational	F	9 years and 2months	Y
SW12	Day	M	7 years and one month	Y
SW13	Day	F	1 year and 3 months	Y
SW14	Day	M	2 years and 5 months	N
SW15	Day	F	2 years and 2 months	Y
SW16	Community	M	1 year and one month	Y
SW17	Community	M	11 months	Y

Table 2.

Profile of interviewed family members and caregivers.

Family member/caregiver (n = 12)	Unit	Gender
F1	Residential	F
F2	Day	F
F3	Day	M
F4	Vocational	F
F5	Residential	F
F6	Day	M
F7	Day	F
F8	Vocational	F
F9	Day	F
F10	Residential	F
F11	Day	F
F12	Residential	F

Prior to the commencement of the focus groups, informed consent was obtained from all of the participants. The first two focus groups were conducted with only the social workers who shared observations of their clients during the pandemic. One month later, two combined focus groups were held with both the social workers and caregivers. The moderator followed a predetermined script and asked the focus group members to review their observations of the experiences of people with intellectual disabilities and their corresponding responses during the pandemic. They were asked to evaluate their own experiences and think about areas of improvement. The focus group members were given open-ended questions according to the study objectives. The questions focused on reviewing interactions and working with different systems. The discussions were recorded and subsequently transcribed.

Data analysis

A thematic analysis was used to analyse the data (Braun & Clarke, 2006). The transcriptions of the focus group interviews were read independently by the first two authors to identify the initial codes. Themes related to the research objectives were identified by repeated close readings and then the data were coded. The first two authors discussed these themes and referred to the transcripts when necessary to reach consensus on the codes and themes.

Results

Using the bioecological perspective, three themes were identified: (1) limited social ties with the community that could provide support; (2) professional support as the main source of assistance; and (3) limited resources on how to care for people with intellectual disabilities. The themes showed that people with intellectual disabilities and their family members rely on formal care and have limited social ties that can support the independent living of people with intellectual disabilities. In addition, the professionals also rely on professional resources as their main source of reference, and neglected the development of supportive relations with the community and neighborhood. Due to reliance on professional care, the family members also demonstrated limited knowledge in handling challenging behaviors and addressing both the physical and mental health conditions of people with intellectual disabilities. All of these factors have created challenges for people with intellectual disabilities who are living independently in the community when professional services were unavailable during the COVID-19 pandemic.

Limited social ties and community support

Disconnection from society, emotional instability, and risk-prone behavior are the key subthemes that indicate people with intellectual disabilities had challenges in adapting to changes in the environment during the COVID-19 pandemic. Such behavioral traits also suggest limited social ties and lack of community support resources.

Disconnection from society

When support services were suspended during the pandemic, those with intellectual disabilities faced the loss of social contact. Aside from family members and caregivers, they were unable to interact with others in the community. In general, social workers, community service staff members, and other people with intellectual disabilities constituted their core social circle. They were further disconnected from society if district support center services were shut down:

Of course, if he is able to go to the workshop and work, meet up with his friends and co-workers, it’ll certainly be much better for him … he won’t be so depressed. Staying at home every day, if he's not with his mother, then he's with his sister; if that's the case, his mood just gets worse. (F4)

If he goes to the centre, where there are professionals, his classmates, etc., he has contact with more people, interacts more and there are more group activities, so he has social contact. If he is at home, there is only me as his caregiver … not because the burden is heavier; I just want my son to have more activities. (F9)

Emotional instability

As social ties and support networks were limited during the time when services were suspended, people with intellectual disabilities mainly stayed at home with their family members and caregivers. Their emotions fluctuated and they frequently became agitated.

If he stays at home, he will easily become irritated. If he's not allowed to go to the centre, he’ll lose his temper often. It's much better if he can go to the centre, which will distract him. (F3)

I said that even though he can’t go out, he could still do some exercises at home. He ignored my suggestion and became irritated. (F4)

Risk-prone behaviors

As people with intellectual disabilities had limited access to public spaces and limited social contact beyond their immediate family members, many felt bored and sought sensory self-stimulation. Subsequently, various kinds of behavioral problems emerged, including risk-taking behaviors that required a referral to a clinical psychologist for therapy.

When they stay at home, a lot of behavioural problems emerged, including annoying others, losing their temper and throwing things … some of them would be referred to a clinical psychologist for therapy. (SW11)

Since staying at home was no fun, he would resort to sensation-seeking behaviours … which are dangerous. (F7)

Besides, there are more behavioural problems to handle. There were some new kinds of behavioural problems during the pandemic, and more new behavioural patterns. Also, about sensation stimulation … if they do not feel excited enough, like the kinds of sensations that bring joy and excitement, or don’t feel enough joyful excitement, we have to create some activities for them. Otherwise, they will be very bored if they cannot leave the house. (SW17)

Professional support as main source of assistance

In terms of the service provision organizations, the adaptations were limited to either moving the center to the home, or moving the community to the center. During the pandemic, professional support remained by far the primary source of assistance, with only limited contributions from volunteers.

Moving center to home

As the pandemic and the related measures might remain status quo for a period of time, the social workers developed training materials for their clients with intellectual disabilities to use at home rather than wait for the restrictions to be lifted. In addition, they conducted home visits and provided at-home services.

As the pandemic continued, we started to think about ways to support our service users at home. So we kept in touch with the caregivers, and called them. Our colleagues have been phoning them all along. Then, our colleagues also provided services in the home of our clients. District support had been home-based in the past, so our colleagues are familiar with this mode of service delivery. It's like at-home services … moving the centre to their home. (SW17)

Similar practices were also developed for the career training workshops. Since the restrictions in place would not allow the service users to attend the workshops, the social workers took the initiative to develop different sets of activities for their service users with intellectual disabilities to use at home. Although these were not activities related to career training, they were still meaningful.

We are like our colleagues in the district support centres. We developed training packages and had the parents take it home. They would go to the centre or the workshop to collect the packages and allow the service users to do them at home. The packages might be handicrafts, colouring, or games …. However, if the service users come to the workshop, we would provide them with career training, help them learn to get along with others, teach them good work habits and punctuality … the training packages are meant to help them pass time, so they can have something to do at home, which is better than nothing. (SW11)

We gave the service users some clerical training and there was a period of time that I asked them to type some text into a document for me. I had to find something for them to type for me. I told them, you help me type the text, one passage a day, and then email it to me afterwards’. (SW11)

As some of the parents or caregivers are worried about contracting COVID-19, they had hesitations in allowing the social workers to provide services in their home. In those situations, the at-home training packages were very important.

Because of the uncertainties during the pandemic, some of the parents did not want us to provide services in their home. (SW16)

Moving the community to the centers

Even though services have already resumed, the activities of people with intellectual disabilities are still often confined to day care service centers or residential care homes. To sustain a sense of community for these individuals with intellectual disabilities, the social workers developed an innovative activity: simulating community engagement.

We were thinking of ways to maintain social inclusion. In the past, the service users were able to go to restaurants and enjoy afternoon tea together. If they could not go out [because of the COVID-19], could we provide the same experience for them? Even if we could give them the exact same experience, would they feel the same way? Could doing this maintain some sense of community? We tried re-enact a Chinese restaurant … We dressed and acted like staff in a Chinese restaurant … as waitresses, selling pork buns. But the experience could only be maintained for a short while. (SW15)

Limited contribution from volunteers during the pandemic

It is worth noting that there were various groups of volunteers who provided activities for people with intellectual disabilities before the pandemic. However, the volunteers could not visit the centers during the pandemic, and activities that could be provided via Zoom or pre-recorded videos were limited.

[Regarding art appreciation] When the pandemic situation was serious, we resumed the activities on Zoom … The first two times, the service users were delighted, very excited. They responded actively on Zoom. However, after two more times, the service users acted as if they were watching TV and did not have much of a response. (SW14)

Some of the volunteers are very passionate. For instance, a group of volunteers made some video clips and sent them to our centre for our service users. We would let the service users to watch those videos. (SW9)

Limited resources on how to care for people with intellectual disabilities

The caregivers and family members of those with intellectual disabilities also seemed to be unable to adapt to the changes during the pandemic. The subthemes of increasing conflict with people with intellectual disabilities, deterioration of health, and feeling stressed and frustrated all indicate maladaptation and are the consequence of a lack of resources for those who care for people with intellectual disabilities.

Increase in conflicts with people with intellectual disabilities

Due to limited resources and increases in emotional and behavioral problems, there was an increase in conflict among caregivers, family members, and people with intellectual disabilities.

Since he was not able to go to the workshop and I did not place him in a residential care home, caregiving became very difficult … There weren’t any activities. While he does not show his emotions, his emotions still fluctuated because he was just at home, was so bored, wasn’t obedient … and we (the parents) also became easily irritated. There were some conflicts between us. (F4)

Deterioration of health

In addition to declines in mental health, the lack of physical activity at home often deteriorated the physical health of many of those with intellectual disabilities.

I saw that some of our service users have deteriorated rapidly, and it's really significant. There are two who now need to use a wheelchair but did not need to use one before the pandemic. (F8)

When our service users went back to the workshop to work, they were quarrelling every day. This is because some of them talked over other people and did not want to listen to others. Some of them were unable to recognise their peers, or could not understand the directions, or forgot where the toilets are … When a group of service users came back, there were a lot of arguments and some conflicts. This is because their physical conditions, mobility, and memory have deteriorated. That was the situation when they came back to our workshop to work. (SW11)

Stress and frustration of families and caregivers

The pandemic is still an unprecedented crisis (at the time of writing of this article) during which people have to stay home at some time or another when there were/are outbreaks. Therefore, many residents were confined to their small home during lockdowns and restrictions. The confinement of people with intellectual disabilities and their caregivers led to various emotional and behavioral problems. The parents were under extreme stress and found it difficult to care for their child with an intellectual disability.

Their behaviours made it challenging for their family members to provide care. (F9)

The caregivers felt stressed, because it's serious. (F8)

I felt frustrated; my son had so many behavioural problems, I felt so annoyed. (F7)

Discussion

The findings show that the existing model of community care services effectively promotes community living for people with intellectual disabilities, but they remain confined to interaction with a limited number of microsystems, their family and organizations that provide support services. Hence, their social networks often only include their immediate family members and people associated with their workshop or day care service center, who are mainly social workers, staff members, and other people with intellectual disabilities. This aligns with findings that staff members who provide health or community support also constitute the majority of the networks of those with an intellectual disability (Bredewold et al., 2020; Van Asselt-Goverts et al., 2013). That is, people with disabilities generally have smaller social networks that are limited to family members and similarly disabled people. Others such as neighbors, have limited contact with them and often view them as outsiders (Overmars-Marx et al., 2018).

This study further shows that care professionals form strong but separate dyadic relationships with people with intellectual disabilities and their families. When people with intellectual disabilities and their caregivers or family members require support, professionals are their main source of assistance. Nonetheless, such close bonds and rapport established within the mesosystems that involve professionals, family members, and caregivers create increased reliance on professional support.

Due to this close relationship, there can be serious consequences for the physical and mental health of people with intellectual disabilities and their family members if there is a breakdown in services. The increasing turmoil, emotional trauma, and rapid physical deterioration of people with intellectual disabilities caused by the recent COVID-19 pandemic restrictions in Hong Kong demonstrate that family members and caregivers are inadequately prepared to cope with people with intellectual disabilities and care for them for prolonged periods of time. Daily routines which include visits to day care service centers or workshops without deliberate creation of space for other systems of support have negative consequences when these services are unavailable. This also reveals that communities and neighborhoods have limited interactions with people with intellectual disabilities and are not part of the network in providing help or support.

Although professionals are the main source of support in this study, the findings also demonstrate that there are social groups in the community who are willing to volunteer and provide support for people with intellectual disabilities. However, their involvement and participation are dependent on their connections with care professionals, and barriers to participation such as the pandemic may prevent them from actual involvement. The pandemic has shown that the public at large may not possess adequate knowledge and skills to communicate and interact with people with intellectual disabilities, which would in the end create relatively superficial relationships.

The findings also illustrate that social workers tend to resort to professional care resources to resolve issues that family members are facing. They developed innovative interventions, either by moving the center to the home or the community to the center, but did not proceed beyond this microsystem. Although activities were available to realize social inclusion and community involvement before the pandemic, linkages to other microsystems were tenuous. Some of the social groups might have wanted to continue to provide assistance, but lack the knowledge required to work with people with intellectual disabilities, thus discouraging them from doing so.

It is not novel that people with intellectual disabilities often live segregated from their communities in a relatively closed microsystem of support with limited interactions and insubstantial links to the community. The relationship between the community and people with intellectual disabilities and their families hinges on the professionals. Such a unilateral system of support needs to transcend beyond its current limitations and prepare for unpredictable upheavals, such as the ongoing pandemic.

Implications

Care in the community by the community

Using the bioecological perspective, the pandemic conditions over the past 3 years have clearly demonstrated that the modern system of community care is insufficient when faced with shocks to the professional support system. This situation is commonly found in industrialized societies in the West (Carpenter, 2021; Mansell & Beadle-Brown, 2010). Other than professionals, people with intellectual disabilities form weak dyadic relationships in a limited number of microsystems. If professional services are suspended, both families and caregivers experience difficulties in caring for people with intellectual disabilities. Erosion of community relations, which have intensified in the past decades in parallel with the continual development of economic globalization in the developed countries, set the context magnifying such negative impact (Jaššo & Petríková, 2019; Sampson, 2019).

The struggles of this system during the pandemic illustrate the significance of delivering care for people with intellectual disabilities in the community by the community, a shared-care model that empowers both family members and the community to promote independent living (Shum & Lum, 2020). Hence, it is timely now to build gemeinschaft type of community relations defined by communal attachments and meaningful personal relationships (Tönnies, 1887/1957) in a community. Such relations can facilitate social cohesion by emphasizing trust, a sense of belonging, and willingness of community members to participate and help (Chan et al., 2006). By establishing gemeinschaft type of relations in the community, the neighborhood can provide support during pandemic restrictions on the merits of physical proximity and social familiarity. The support can be both emotional and tangible, including services to help watch over and engage with people with intellectual disabilities. These interactions would reduce reliance on professionals and are essential to establishing community care services that are founded on the principle of care in the community by the community, and can effectively withstand the impacts of the ongoing pandemic. These kind of community relations are commonly found in traditional Chinese kaifong (neighborhoods) (Shum & Lum, 2020). Unfortunately, this kind of support has weakened substantially in the past decades amid rapid globalization, particularly among the developed countries (Musterd et al., 2017; Riki et al., 2019).

Urbanization and the geographical characteristics of many metropolitan cities mean that they are often gesellschaft societies (associational societies), which are based on individualized, self-interest, and impersonal connections (Schiefer & Van der Noll, 2017). Gemeinschaft type of community relations are rarely found. Without support from community members or neighbors, volunteers and social groups in gesellschaft societies that want to provide assistance to people with intellectual disabilities are the main sources of support other than professionals in the community care support system. However, these volunteer groups have insubstantial ties with people with intellectual disabilities and their family caregivers. They may not be acquainted with them which would inhibit any type of support outside of formal volunteer time or contexts. The weakness of such support has challenged the model of community care support during the pandemic.

The experiences of people with intellectual disabilities and their families and caregivers during the pandemic have compelled the reconsideration of the establishment of gemeinschaft-type relations in a gesellschaft society. People with intellectual disabilities may lack the conceptual (e.g., language and concepts of money, time, and numbers), social (e.g., communication), and practical (e.g., personal care and safety) skills necessary to perform daily activities (AAIDD-11, 2010). Facilitating interactions between people with intellectual disabilities and the community therefore has great significance. Centers that provide community care services can use their central locations in neighborhoods to facilitate the establishment of such relations and support people with intellectual disabilities in developing skills for independent living and participation in community life (García Iriarte et al., 2016).

Building gemeinschaft type of relations in gesellschaft society: Role of service organisations

To enhance the participation of other microsystems, it is recommended that community care services help to develop the capacity of family members and caregivers so that they can independently manage the emotional and behavioral challenges of people with intellectual disabilities when professional support is not available. Family bonds are essential to people with intellectual disabilities even when their behaviors are challenging or disruptive (Giesbers et al., 2020). Everyone has individual characteristics and needs, and even though professional education and support are important, they are suggested not to supersede the role of family members and caregivers. Instead, the caregiving proficiency of family members and caregivers can be further developed to enhance at-home support. This helps to improve family relationships and positively influence the behavior of those with intellectual disabilities (Clarke et al., 2019).

Second, professionals and staff are cautioned to refrain from undermining the importance of neighborly relationships when providing formal support to people with intellectual disabilities (Van Alphen et al., 2010). Instead, the social networks of people with intellectual disabilities should be enlarged to include neighbors and community members who have contact with people with intellectual disabilities (Bromley et al., 2013). Community care organizations are encouraged to cultivate volunteer or social groups that develop long-term relationships with people with intellectual disabilities through meaningful communication, understanding, and engagement. These groups can give people with intellectual disabilities the opportunity to learn to establish and maintain friendships with others in the community, which is a common desire for people with intellectual disabilities (Duggan & Linehan, 2013). In the long run, these volunteer groups constitute as a sustainable support network for assistance with a long-term commitment.

Additionally, people with intellectual disabilities can be supported by volunteers to become more involved in the community. The contact between the two can progress from mere presence to association, and they can participate in activities together that promote the development of interpersonal relationships (Simplican et al., 2015). Through these progressive levels of involvement, an inclusive community can be cultivated as more people understand the needs of people with intellectual disabilities and become acquainted with them. Relevant basic knowledge and skills for interreacting with people with intellectual disabilities can be conveyed to the community and the public through public education and activities.

Overall, through this process, the networks of people with intellectual disabilities and their families or caregivers can extend (Heaney & Israel, 2009) beyond the centers that provide community care services. The lack of social networks increases the reliance of people with intellectual disabilities on professional staff for support for independent community living (Duggan & Linehan, 2013). By expanding their social networks, they can instead have a greater sense of belonging and form relationships that may help to reduce their challenging behaviors (Clarke et al., 2019).

Limitations

This study is subject to the following limitations. First, the work relies on the retrospective self-reporting of the focus group respondents, so possible memory-related biases might exist. Second, as there are varying degrees of intellectual disability, further studies may be necessary to disaggregate the experiences of people with specific types of intellectual disabilities. Third, our bias as researchers might have informed how we have analysed the data. Although some degree of bias is present in most research, we use reflexivity to understand the role of each researcher. The involvement of scholars and practitioners in this study project have enabled us to sensitize each other. Finally, we recognize the importance of collecting the first-hand accounts of people with intellectual disabilities, but, at the time of the research work, group contact with people with intellectual disabilities was difficult due to pandemic restrictions. Future studies should therefore include the perspectives of people with intellectual disabilities.

Conclusion

Professional staff play a pivotal role in supporting the independent community living of people with intellectual disabilities. However, the model of social care that provides services to people with intellectual disabilities should also work to include their social networks as a method for strengthening their resilience to unpredictable circumstances, such as the pandemic. Unilateral systems of support, without participation of other systems to support independent community living, lead to segregated lives of people with intellectual disabilities. It is therefore timely for organizations that provide social and community care to adopt a model of shared care in the community by the community, and facilitate the establishment of gemeinschaft type of relations in a gesellschaft society by enhancing community participation and emphasizing the social inclusion of people with intellectual disabilities.