Care and rehabilitation institutions for people with intellectual disabilities during the COVID-19 pandemic: Polish experiences

Abstract

People with intellectual disabilities benefit from many forms of institutional support, which include residential, rehabilitation, and educational services. Changes caused by the pandemic, especially the introduction of new rules relating to various aspects of life, raised several challenges and problems in the functioning of these institutions and for the people with disabilities during the COVID-19 pandemic. The research concerned facilities providing services for people with intellectual disabilities in Poland during the pandemic. The research goal was to determine what changes took place in the rehabilitation and care institutions during the pandemic in terms of their organization and the functioning of their clients and personnel. An online questionnaire was used. The respondents were institution employees. Data showed a number of preventive, educational, and supportive activities carried out by the institutions. Adverse changes in the psychosocial functioning of people with intellectual disabilities and other problems during the pandemic were reported.

Introduction

The COVID-19 pandemic has adversely affected many people with disabilities and their environment. More than a year and half after the pandemic was declared worldwide and measures were introduced to combat it, we can identify certain trends in the population of people with intellectual disability (ID). First of all, it was found that these people constitute a special risk group in terms of the incidence rate of COVID-19 (Landes et al., 2020). The risk of developing the disease is associated with a more frequent coexistence of health problems in this population, but also with limited access to medical services (Hassiotis et al., 2020; McCallion, 2020a). An important risk factor is the more frequent residence of people with ID in communal living conditions, and the increased needs for care or nursing for people with mobility limitations, which necessitates direct contact making it impossible to maintain social distancing (Courtenay and Perera, 2020; McCallion, 2020b; Sabatello et al., 2020).

A review of research from 2020 to 2021 shows a number of trends related to the pandemic in people with ID and in their living environment. Institutions providing services to people with disabilities and ill people introduced significant changes in terms of structure, organization, and personnel. Daycare facilities began to provide remote support, using various technologies (Araten-Bergman and Shpigelman, 2021; Hughes and Anderson, 2020; Itrat et al., 2020). Remote counseling and therapies were provided using telephones or video conferences. 24-hour care facilities introduced isolation of residents, the prohibition of visits, or residents leaving the premises. There was the requirement for direct protective measures, and educational activities were undertaken (Bradley, 2020; Mills et al., 2020; Pajević et al., 2020; Quidley-Rodriguez and de Tantillo, 2020; Zingale et al., 2020). Institution staff experienced increased personal risk, which also translates into concern for the welfare of their loved ones and negative emotional experiences (Thompson and Nygren, 2020). The personnel took on additional responsibilities, for example, related to strict adherence to protective procedures, designing substitute activities, or supporting people with ID in using technologies that help maintain social relationships (Araten-Bergman and Shpigelman, 2021; Bradley, 2020; Hassiotis et al., 2020). The increase in responsibilities also occurred due to increased absenteeism and rotation caused by the health of staff members (Bradley, 2020). The specificity of work during the pandemic brought new challenges, which additionally burdened the personnel whose activities were difficult under normal conditions (Embregts et al., 2021a).

People with ID find it difficult to cope with the demands of the pandemic, and especially with the introduced safety measures (Kim et al., 2021b; Spencer et al., 2021). Both carers and specialists noticed problems in shaping the habits of safe behavior and the use of personal protective measures. They also reported that people with ID misunderstood the limitations and were reluctant or resistant to comply (Bailey et al., 2021; Kim et al., 2021b; Lunsky et al., 2021). It turned out, however, that shaping specific habits in these people was possible, although it required more time and support from the environment (Kim et al., 2021b). People with ID have experienced activity limitations and changes in their routine that are important to their sense of safety and wellbeing (Kim et al., 2021a, 2021b; Murray et al., 2021; Sinclair et al., 2020; Wolstencroft et al., 2021). They have lost the ability to maintain previously developed competencies, including social skills (Kim et al., 2021a, 2021b; Spencer et al., 2021; Wolstencroft et al., 2021; Yarımkaya and Töman, 2021). Due to the financial consequences of the pandemic, their jobs or even their stay in daycare institutions may be at risk (Amor et al., 2021). They have experienced social isolation and loss of contact with significant others, which is important for their mental health (Embregts et al., 2021a; Kim et al., 2021a; Murray et al., 2021; Wos et al., 2021). Their opportunities to access support, including professional support, have diminished (Lunsky et al., 2021). They have likely responded to these difficulties and limitations by intensifying difficult behaviors and losing control over them (Kim et al., 2021b; McKenzie et al., 2021; Murray et al., 2021; Neece et al., 2020; Wolstencroft et al., 2021; Wos et al., 2021). People with ID reported difficulties in accessing health services and treatment and being afraid of the hospital/physicians because of the possibility of infection (Rosencrans et al., 2021). Proactive measures taken by personnel to prevent negative psychosocial consequences, such as engaging people with ID in various available activities or enabling contacts with loved ones, were key to supporting people with ID (Bailey et al., 2021). On the part of the family environment, parents’ support in the implementation of new, regular forms of activity, organizing the time during the day, giving it a rhythm, allowing for a sense of security, and maintaining competencies, were all important (Kim et al., 2021b).

The described trends show significant consequences of the pandemic for people with ID residing in various environments, including institutional ones. There is a need to verify them in Poland where this topic has not been discussed yet. The research presented in this article focused on the operation of institutions providing services for people with intellectual disabilities in Poland during the pandemic. Over the year, from 4 March 2020, when the first case of COVID-19 was reported, institutions providing services for people with disabilities changed the way they operate (on-site, i.e. with direct participation of people with ID, off-site, that is, with the use of remote means such as the Internet, or hybrid, that is, some activities stationary, others remotely), depending on the number of new cases in the country and its specific administrative areas. If the incidence rate increased to a certain level, the authorities of the country/region or institution decided to introduce greater restrictions, which in turn translated into using remote or hybrid forms of support. The institutions included in the research: occupational therapy workshops (OTWs), self-help homes (SHs), social welfare homes (SWHs), and sheltered flats (SFs), are elements of a broader support structure for people with disabilities. OTWs are daycare support centers for people with disabilities over 16 years of age, carrying out tasks in the field of social and vocational rehabilitation. SHs are daycare facilities, intended for selected groups of people, including people with ID. They conduct activities aimed at developing social competencies, psychological counseling, and therapy. SWHs are traditional institutions, known in other countries, providing 24-hour care for children, adolescents, and adults with ID, along with other groups in need. In Poland, SWHs are the dominant form of support in everyday life, apart from family care (there are few sheltered flats). Sheltered flats are organized, among others, for people with physical disabilities and mental disorders to provide them with accommodation and help develop social competencies and independence.

The aim of the presented research was to define what changes, problems, and needs arose in rehabilitation and care institutions during the COVID-19 pandemic in terms of organization and the functioning of the clients and the personnel. The issues of adjusting activities to safety requirements and changes in the existing forms of activity aimed at fulfilling the objectives pursued by the institution, introducing additional activities supporting people with ID, cooperation with the social environment, and a prospective assessment of the significance of COVID-19 for the functioning of the institution and its clients. In terms of the functioning of the clients and the personnel, the following dimensions were analyzed: using safety measures, possible difficulties related to the use of safety measures, emotional and behavioral problems noticed by the carers and reported by people with ID and their parents to the personnel, consequences of the pandemic, and the related restrictions for the psychosocial functioning of people with ID.

The focus was on experiences gained over almost a year: from March 2020 to January 2021, thus, from the moment the pandemic was declared to the moment the presented research was conducted.

Materials and methods

Methods

The research method was adapted to the realities of the epidemiological situation, but also to the need to ensure respondent anonymity. An online Google Forms survey was used. The platform allows researchers to construct a form and send it as a link in an email. Then the respondents can send the completed survey back to the researcher’s account without disclosing their personal data.

The author’s own questionnaire was used in the research. It was designed based on a literature review on the functioning of institutions and people with ID during the COVID-19 pandemic and analysis of institution activities resulting from their legal and organizational regulations. The author’s own experiences gained through contact with institutions, especially OTWs, established in the course of the research and educational activities were also taken into account. At the time of planning the research (December 2020), no tools were found that would be useful from the perspective of the research topic and would relate to the state of the pandemic. Two versions of the questionnaire were developed, adequately to the specific nature of the activity. One was directed to employees of OTWs and SHs (37 questions + data on the institution), the other to the SWHs and SFs (39 questions + data on the institution). Most questions were the same in both versions. The questions were usually closed (multiple-choice questions, for example, What kind of difficulties have been observed in the use of masks/helmets: an improper way of putting on, unsystematic putting on, resistance to putting on, not changing disposable ones/non-disinfecting reusable ones, other – what kind?, no difficulties were observed; or single-choice questions, for example, is the body temperature measured by the clients of the institution for control purposes: Yes, No); one open-ended question was also used: What might the long-term effects of the pandemic be, given the functioning of the institutions?

The initial version of the questionnaire was assessed by two employees of OTWs: a manager and a psychologist. Necessary modifications were made based on their comments.

Sampling

The research covered institutions across Poland, which were contacted by email with a request to participate in the research. The email specified that the questionnaire should be completed by a person most competent in the presented topic. Emails and contact details of OTWs were obtained from the national register (http://www.niepelnbezpieczni.gov.pl/download/Baza-Adr-Wtz-2019-1605518238.xls), and SHs and SWHs contact details were obtained from registers created by administrative units. Accessing contact details for SFs was difficult – addresses were searched individually or in groups, depending on the available data. Full registers were missing. It is a form of support we know little about when it comes to statistics related to people with ID.

Recruitment

About 500 emails were sent to OTWs, 700 emails to the SHs, 230 emails to SWHs which work for people with ID, and 42 emails to institutions that run the SFs. In the last case, confirmation of activities for people with ID was possible only in the case of apartments under the patronage of PSONI. As a result, there may have been apartments with no residents with ID. The response rate was low: 10 percent.

Ethics

Participation in the research was voluntary and did not involve any remuneration. Using publicly available data of institutions (email addresses), emails were sent with a detailed description of the research themes, goal, and use of the results, as well as a brief presentation of the researcher’s scientific activity, to the above-mentioned institutions in Poland. People representing the institutions had the opportunity to take part in online research or to refuse. Data confidentiality was ensured: in no case was it possible to identify the institution from which the information was received. Moreover, respondents could decide not to answer some questions concerning infections of the personnel or the clients. Completed questionnaires were collected on the researcher’s personal password-protected account. They do not contain personal data.

Results

The material was collected from 148 institutions, including 131 OTWs (67.2%) and SHs (32.8%), 16 SWHs, and one SF. There were no data gaps since the system prevented respondents from skipping questions. In most cases, the person providing information was the manager/director (82.44%), in some cases, pedagogues, psychologists, and therapists. The services of OTWs and SHs are used by 3–122 people with ID (M = 29.39) and 5–120 people use SWHs and SFs (M = 79.41). The age of people with ID ranges from 18 to 96 (overlapping age ranges were given, hence it is impossible to calculate the average) in OTWs and SHs, and from 10 to 95 in the case of SWHs and SFs.

The functioning of the institution

Activities

Most institutions provide basic personal protective measures (Table 1). In individual cases, OTWs and SHs introduced ozonation, antivirus lamps, and disinfection mats. Body temperature was measured in all institutions. Most of them took care to keep a safe distance, but in 12 percent of the OTWs and SHs, and one of the other institutions, this issue was difficult to assess. Adaptations of personal and material space to safety requirements included many common spaces, but not in all institutions, perhaps due to space constraints. The scale of solutions introduced by daycare institutions on their own was broad: introducing rotational classes, dividing into groups, closing cloakrooms, removing certain elements of equipment such as pillows, carpets, blankets, and maintaining the match of the same group and the same guardian, using tapes to mark zones. In individual 24-hour care institutions, residents were encouraged to stay in their rooms. Due to the specificity of the functioning of these institutions, an open question was asked about introducing other changes in the institution. The following measures were mentioned: introducing a rotational system of work and employee teams assigned to groups of residents using common utility places (such as a canteen) in turns, increasing the number of utility rooms, separation of administrative and residential areas, separation of residents of individual departments, separation of places of potential isolation, isolation of sick people, quarantine for people returning from family homes, hospitals, people leaving the facility arbitrarily, and the newly admitted, quarantine of packages from families and all other items from outside (e.g. cleaning products), the prohibition of visiting and leaving the facility, scheduling visits to ensure isolated meeting places, establishing new rules for collecting meals, washing, delivering dirty dishes, the method of transporting and storing waste, and stopping renovation work.

Table 1.

Activities of the institution for ensuring safety and support.

Type of activity	OTWs SHs a N (%)	SWHs SFs b N (%)
Applying protective measures
Face shields	74 (56.5)	6 (35.3)
Disposable face masks	108 (82.4)	15 (88.2)
Reusable face masks	72 (55)	11 (64.7)
Gloves	92 (70.2)	15 (88.2)
Disinfectant liquid	130 (99.2)	17 (100)
Other	25 (19.08)	0
None of the above	1 (0.76)	0
Measurement of body temperature	131 (100)	17 (100)
Keeping a safe distance	108 (82.4)	15 (88.2)
Changes in personal and material space
Limiting the number of clients in the classroom at the same time	120 (91.6)	N/A
Limiting the number of clients in the bedroom at the same time	N/A	2 (11.8)
Limiting the number of clients in the kitchen/dining room at the same time	53 (40.5)	8 (47.1)
Locking the kitchen/dining room	87 (66.4)	N/A
Limiting the number of clients in the cloakroom at the same time	90 (68.7)	N/A
Limiting the number of clients in the dayroom at the same time	N/A	10 (58.8)
Increasing the distance between people in the classroom	115 (87.8)	11 (64.7)
Increasing the distance between people in the kitchen/dining room	46 (35.1)	9 (52.9)
Increasing the distance between people during individual meetings	97 (74)	11 (64.7)
Other	21 (16.03)	2 (11.8)
No changes of this kind were introduced	0	3 (17.6)
Displaying instructions and information	131 (100)	17 (100)
Adjusting instructions to the needs of people with ID COVID-19 tests	108 (82.4)	9 (52.9)
People with ID	10 (7.6)	16 (94.1)
Personnel	32 (24.4)	15 (88.2)
Education about the use of personal protective measures	130 (99.2)	16 (94.1)
Hand hygiene	131 (100)	16 (94.1)
Wearing face shields or face masks	122 (93.1)	13 (76.5)
Keeping a safe distance	127 (96.9)	13 (76.5)
Avoiding crowded spaces	110 (84)	12 (70.6)
Limiting time spent in public spaces	110 (84)	8 (47.6)
Other	11 (8.4)	5 (29.4)
Education about COVID-19	127 (96.9)	16 (94.1)
Preventive measures against infection	124 (94.7)	15 (88.2)
How infections spread	116 (88.5)	12 (70.6)
Symptoms of infection	95 (72.5)	9 (52.9)
Other	3 (2.3)	1 (5.9)
Taking actions to support people with ID during forced isolation and temporary closure of the institution	131 (100)
Phone calls	131 (100)	N/A
Advice provided by phone regarding clients’ problems	126 (96.2)
Emails	53 (40.5)
Advice provided by email regarding clients’ problems	26 (19.8)
Online classes in groups	37 (28.2)
Online individual classes	68 (51.9)
Staff contacts with family members of people with ID	128 (97.7)
Other	43 (32.8)
Activities enabling contacts with the family environment		17 (100)
Providing access to the telephone for people who do not have it, but can use it		15 (88.2)
Providing access to the Internet and a computer for people who can use it	N/A	9 (52.9)
Helping people with ID to use the phone if they do not have such competencies		14 (82.4)
Helping people with ID to use the Internet and computer if they do not have such competencies		8 (47.1)
Other		4 (23.5)
Organization of activities supporting residents during the pandemic	N/A	15 (88.2)
Individual meetings with a psychologist		12 (70.6)
Group meetings with a psychologist		3 (17.6)
Individual meetings with other specialists		7 (41.2)
Group meetings with other specialists		5 (29.4)
Other		5 (29.4)
Running classes/meetings online at the moment	90 (68.7)	N/A

OTWs: occupational therapy workshops; SHs: self-help homes; SWHs: social welfare homes; SFs: sheltered flats; ID: intellectual disability; COVID: coronavirus disease.

^aOTWs and SHs =131.

^bSWHs and SFs =17.

Safety instructions have been posted in all institutions (in the toilet, corridor, classrooms, kitchen/dining room, and other places, e.g. in front of the entrance to the facility). In most cases, but only in OTWs and SHs, instructions were adjusted to the needs of people with ID (e.g. easy-to-read text). However, over one-third of respondents representing all institutions could not assess this accessibility. Tests for COVID-19 were conducted primarily in 24-hour care institutions. Not all representatives of OTWs and SHs had such information (approx. 30% concerning the clients and personnel). In 24-hour care facilities, there were no such cases in the group of residents. Some respondents decided not to provide information about the tests.

Almost all institutions have undertaken educational activities in the field of personal preventive measures. In addition to those listed in Table 1, in individual cases, they covered such issues as disinfection of the surroundings, the rules of quarantine, the use of disposable gloves, taking care of one’s health, dealing with possible infections, and even shopping online. Educational activities were organized, in most cases, many times, and they still are at the time of writing this article (80.2% in OTWs and SHs and 70.6% in nursing homes and sheltered flats). A few institutions limited themselves to providing instructions several times at the beginning of the pandemic (respectively, 12.2% and 11.8%). Residents and personnel were educated about the COVID-19 pandemic. In addition to protection against infection, routes of infection, symptoms in selected cases, the sanitary regime, and the need for vaccination were mentioned.

All institutions took supportive measures during temporary isolation and closure of institutions. They were aimed at maintaining contacts with clients and their family members and supporting them in situations of emerging life problems. In daycare facilities, the key was to design replacement measures because of the inability to conduct normal activities aimed at rehabilitation of people with ID. In the case of 24-hour care facilities, activities supporting contact with the family and supporting residents through individual forms of psychological counseling were important. Additional support initiatives aimed at activating the people with ID were also undertaken by the OTW and SH staff. They included preparing and delivering educational packages, therapeutic materials (e.g. videos), and activities to be done at home (16 institutions), securing everyday needs, especially food and nutrition for lonely people in the form of providing hot meals, shopping, taking them to the doctor (7), going for walks with the person under care, individual consultations at home/institution (8), setting up a group on a virtual communication platform (e.g. Skype)/using such platforms (3), and online psychological and psychiatric advice. In nursing homes and sheltered flats, the number of therapeutic classes was increased, efforts were made to diversify activities also taking advantage of the garden on the premises, and remote classes were organized.

Problems and needs

Currently, that is, almost a year from the beginning of the pandemic, institutions still have difficulties in conducting their activities (Table 2). This is mainly due to formal limitations and protective measures. The difficulties relate to a large extent to forms of activity associated with contacts with the wider environment. In individual cases, representatives of OTWs and SHs indicated the inability to keep a safe distance due to the limitations of the premises and the fear of older caregivers/parents related to the increased risk of infection. Thus, for safety reasons and realistic possibilities dictated by them, many day institutions limit direct contacts, instead of organizing remote classes and meetings. Such a need was not reported by 15 percent of the representatives of OTWs and SHs. In individual cases, clients or their informal caregivers did not consent to such activities. There were cases where, due to lack of competencies, persons with ID and their guardians could not use equipment that would allow them to participate in such classes.

Table 2.

Problems and needs of institutions during the pandemic.

Type of activity	OTWs SHs a N (%)	SWHs SFs b N (%)
Current difficulties in organizing classes in the institution
Limitations on the number of people in the same space at the same time	94 (71.8)	10 (58.8)
Increased client absenteeism	75 (57.3)	N/A
Increased personnel absenteeism	27 (20.6)	6 (35.3)
The risk of infection during direct contact	92 (70.2)	13 (76.5)
Restrictions on organizing trips	110 (84)	16 (94.1)
Restrictions on the use of forms of cultural life	117 (89.3)	16 (94.1)
Restrictions on using rehabilitation outside the institution	70 (53.4)	9 (52.9)
Difficult contacts with other cooperating entities	99 (75.6)	12 (70.6)
Formal inability to conduct classes on the premises	59 (45)	4 (23.5)
Limitations of direct contacts with family/other significant persons	N/A	16 (94.1)
Other	13 (9.9)	1 (5.9)
No difficulties in this area	0	0
Difficulty cooperating with family/guardians
Difficult direct contact	74 (56.5)
Lack of consent to the participation of the person with ID in classes at the institution for fear of their health	61 (46.6)	N/A
Intensified overprotectiveness toward the person with ID	49 (37.4)
Other	8 (6.1)
No such difficulties have been observed	31 (23.7)
The needs of institutions during the pandemic
More funding	48 (36.6)	11 (64.7)
Greater cooperation with other institutions, such as the health service	74 (56.5)	13 (76.5)
Wider access to information on the risk of infection in communities	25 (19.1)	1 (5.9)
Broader access to personal protective measures	51 (38.9)	5 (29.4)
Psychological support for the staff	39 (29.8)	11 (64.7)
Ensuring equipment to conduct online classes	72 (55)	10 (58.8)
Other	14 (10.7)	0
None	8 (6.1)	0

OTWs: occupational therapy workshops; SHs: self-help homes; SWHs: social welfare homes; SFs: sheltered flats; ID: intellectual disability; COVID: coronavirus disease.

^aOTWs and SHs =131.

^bSWHs and SFs =17.

In most daycare institutions, difficulties in cooperation with family/guardians were recorded, resulting from limitations, but also the attitudes of the informal caregivers. In individual cases, parents’ frustration, unwillingness to cooperate, and lack of understanding of the necessity to introduce restrictions in the operation of the institution were reported. Institutions pointed to the need to cooperate with other institutions, but also to provide them with technological resources allowing them to be active online. Their needs also include greater financial resources and protective measures, or the provision of psychological support for the personnel. Individual respondents reported the need for local authorities’ greater interest and the possibility of having greater autonomy in the institution during the pandemic. In several cases, respondents raised the topic of access of employees and persons with ID to vaccination.

The functioning of people with ID

Difficulties in using personal protective measures, especially masks, were noted in people with ID at daycare and 24-hour care institutions (Table 3). In individual cases, problems were reported such as manual dexterity disorders, sensory hypersensitivity, difficulties in communication while wearing a mask, and anxiety. Sensory hypersensitivity and low efficiency also make it difficult to wear gloves. Several institutions decided not to apply the rule to wear face masks or gloves by people with ID due to several problems or ‘the inability to enforce’. Disinfectants were used in excess, wiped on clothes, there were difficulties in forming the habit of using it, and people with low manual skills needed help to use them. In both types of institutions, especially the 24-hour care facilities, there were cases of infection of people with ID and the staff. In about one-fifth of OTWs and SHs, and one case among other institutions, the respondents did not know about infections or exercised their right not to disclose such information. People with ID take a wide interest in COVID-19 especially regarding issues such as the risk of infection and the possibility of protecting oneself against the virus. The respondents reported being asked questions about the end of the pandemic and the possibility of returning to ‘normal’ life and the usual organization of classes and activities. The issue of the pandemic was important for some due to personal loss (the death of many clients’ parents). The pandemic inspires fear in individual people with ID but it is not a common phenomenon. In one-third of daycare institutions and half of 24-hour care facilities anxiety was reported by many clients. In general, it was assessed that the competencies of people with ID in terms of protecting themselves against the virus are lower than in the general population, however, the risk assessment was not clear. On one hand, these people have many traits and deficits that increase such risk. On the other hand, they are less mobile and more often function in a protected environment. In individual cases, individual health risk factors were noted, such as lower immunity, diseases, and accompanying disorders.

Table 3.

Problems with the functioning of people with ID during the pandemic.

Type of problems	OTWs SHs a N (%)	SWHs SFs b N (%)
Difficulties of people with ID to use personal protective measures
Incorrect way of putting on the protective mask	67 (51.5)	9 (52.9)
Forgetting to put on the mask	77 (58.8)	11 (64.7)
Resistance against putting on the mask	69 (52.7)	13 (76.5)
Using disposable masks more than once / Not disinfecting reusable masks	90 (68.7)	9 (52.9)
Other irregularities in the use of masks	19 (14.5)	3 (17.6)
Difficulties in the use of masks have not been observed	8 (6.1)	2 (11.8)
Incorrect way of putting on the gloves	50 (38.2)	4 (23,5)
Forgetting to put on the gloves	59 (45)	7 (41.2)
Resistance against putting on the gloves	68 (51.9)	10 (58.8)
Using gloves more than once	32 (24.4)	5 (29.4)
Other irregularities in the use of gloves	22 (16.8)	4 (23.5)
Difficulties in the use of gloves have not been observed	13 (9.9)	2 (11.8)
Lack of care in the use of disinfectants	64 (48.9)	8 (47.1)
Inconsistent use of disinfectants	65 (49.6)	9 (52.9)
Resistance to the use of disinfectants	17 (13)	6 (35.3)
Other irregularities in the use of disinfectants	13 (9.9)	2 (11.8)
Difficulties in the use of disinfectants have not been observed	46 (31.1)	7 (41.2)
Infections among people with ID	44 (33.6)	13 (76.5)
Infections among personnel	77 (58.8)	15 (88.2)
Interest of people with ID in COVID-19	100 (76.3)	13 (76.5)
Scope of interest
Possibility of being vaccinated	60 (45.8)	13 (76.5)
Concerns about vaccinations	40 (30.5)	7 (41.2)
Protective measures against the virus	70 (53.4)	10 (58.8)
Risk of infection	87 (66.4)	5 (29.4)
Postviral complications	29 (22.1)	1 (5.9)
Symptoms	55 (42)	7 (41.2)
Other	8 (6.1)	3 (17.6)
Fear of COVID-19 observed in people with ID
Individual cases	79 (60.3)	4 (23.5)
Many clients	38 (29)	9 (52.9)
Assessment of competencies of people with ID related to self-protection against COVID-19
Lower than in other people	85 (64.9)	12 (70.6)
Average, similar to other people	30 (22.9)	2 (11.8)
Higher than in other people	3 (2.3)	1 (5.9)
Difficult to assess in institutional conditions	13 (9.9)	2 (11.8)
The risk of COVID-19 infection in people with ID
Lower than in non-disabled people due to lower mobility	27 (20.6)	5 (29.4)
Similar to non-disabled people	35 (26.7)	3 (17.6)
Higher than in non-disabled people	49 (37.4)	6 (35.3)
Difficult to assess in institutional conditions	20 (15.3)	3 (17.6)
Risk factors for COVID-19 infection in people with ID
Intellectual limitations make it difficult to assess the risk	100 (76.3)	13 (76.5)
Difficulty understanding and using information	98 (74.8)	12 (70.6)
Lower social competencies in various areas of life	75 (57.3)	8 (47.1)
Tendency to exhibit risky behavior	49 (37.4)	6 (35.3)
Inability to predict the effects of own actions	106 (80.9)	15 (88.2)
Dependence on others	53 (40.5)	8 (47.1)
Other	6 (4.6)	1 (5.9)
Problems reported by clients during forced isolation
Boredom and inactivity	104 (79.4)	11 (64.7)
Loneliness	106 (80.9)	10 (58.8)
Fear of being infected	89 (67.9)	8 (47.1)
Fear of close ones being infected	58 (44.3)	6 (35.3)
Deterioration of physical health	62 (47.3)	7 (41.2)
Decrease in mood (sadness)	114 (87)	16 (94.1)
Family problems	51 (38.9)	1 (5.9)
Formal problems	52 (39.7)	4 (23.5)
Other	10 (7.6)	3 (17.6)
None	0	0
Problems observed in people with ID by the personnel of 24-hour care institutions during forced isolation
Deterioration of physical health	N/A	7 (41.2)
Decrease in mood		17 (100)
Inactivity of the person with a disability		10 (58.8)
Emergence of difficult behavior		11 (64.7)
Intensification of difficult behavior		7 (41.2)
Decrease in the independence of the person with a disability in everyday functioning		6 (35.3)
Other		1 (5.9)
None		0
Problems reported by parents/guardians of people with ID during forced isolation and suspension of the institution’s work
Inactivity of the person with a disability	95 (72.5)	N/A
Parent/guardian helplessness	61 (46.6)
Parent/guardian anxiety	81 (61.8)
Decrease in parent/guardian mood	82 (62.6)
Emergence of difficult behavior in the person with a disability	85 (64.9)
Intensification of difficult behavior in the person with a disability	87 (66.4)
Decrease in the independence of the person with a disability in everyday functioning	84 (64.1)
Financial problems in the family	11 (8.4)
Difficulties with ensuring the safety of the person with ID	31 (23.7)
Difficulties with access to primary healthcare for people with ID	66 (50.4)
Difficulties with access to specialist healthcare for people with ID	60 (45.8)
Other	9 (6.9)
None	5 (3.8)

OTWs: occupational therapy workshops; SHs: self-help homes; SWHs: social welfare homes; SFs: sheltered flats; ID: intellectual disability; COVID: coronavirus disease.

^aOTWs and SHs = 131.

^bSWHs and SFs =17.

The time of isolation, resulting in the suspension of daycare facilities and the ban on contacts and leaving the premises for the clients in 24-hour care facilities, resulted in several problems reported by people with ID to personnel (Table 4). Most experienced a decrease in mood/feeling of sadness, a sense of loneliness, but also boredom and inactivity due to a disturbed rhythm of life and lack of organized activity. There were cases of decreased motivation, neglect of hygiene, and self-care (not taking medication). The caregivers confirmed the decrease in mood during isolation among the residents of 24-hour care institutions. Formal and informal caregivers (parents) also noted the emergence of difficult behaviors or their intensification. The scope of problems in the functioning of people with ID who stayed in their family home during isolation experienced by their parents was relatively high. Parents reported problems with providing the person with ID care and dealing with formal matters related to obtaining benefits. During isolation, parents found their adult children lacking patience and longing for friends and acquaintances. In assessing the possible consequences of isolation, parents focused primarily on negative changes in life competencies, but also in the mental sphere: intensification or emergence of mental problems and difficult behaviors. Lack of normal functioning of daycare institutions, as well as temporary isolation, carries the risk of losing the competencies learned by people with ID, but also difficulties related to re-adaptation to the rules that regulate the functioning of the institution. Several respondents stated that clients developed alternative ways of spending free time. Among the additional answers, negative ones prevailed, indicating that the interruption in the activities of the institution would cause motivational and adaptation difficulties for the clients.

Table 4.

Consequences of pandemic-related restrictions for persons with ID and personnel.

Type of problems	OTWs SNH a N (%)	SWHs SFs b N (%)
Consequences of forced isolation for people with ID
Decrease in the level of previously learned life competencies, e.g. independence	111 (84.7)	12 (70.6)
Exacerbation of existing mental problems	95 (72.5)	13 (76.5)
Emergence of new mental problems, such as depression	69 (52.7)	14 (82.4)
Emergence of helplessness	70 (53.4)	10 (58.8)
Emergence of anxiety	73 (55.7)	10 (58.8)
Intensification of existing difficult behavior	88 (67.2)	11 (64.7)
Emergence of difficult behavior	59 (45)	11 (64.7)
Other	6 (4.6)	3 (17.6)
None	3 (2.3)	0
Consequences of the interruption in institution activities for people with ID
Decrease in the level of previously learned life competencies, e.g. independence	119 (90.8)	N/A
Deterioration of interpersonal relations between clients and staff	50 (38.2)
Deterioration of interpersonal relations among clients	70 (53.4)
Difficulties in adapting to the rules of functioning of the institution for people with ID	81 (61.8)
Other	14 (10.7)
None	2 (1.5)
Consequences of changes in institution activities for the staff
Dismissal from employment	13 (9.9)	2 (11.8)
Necessity to use holiday leaves	58 (44.3)	2 (11.8)
Problems with providing care for dependent family members	56 (42.7)	8 (47.1)
Financial difficulties	16 (12.2)	1 (5.9)
Mental strain	89 (67.9)	17 (100)
Other	11 (8.4)	1 (5.9)
None	42 (32.1)	0

OTWs: occupational therapy workshops; SHs: self-help homes; SWHs: social welfare homes; SFs: sheltered flats; ID: intellectual disability; COVID: coronavirus disease.

^aOTWs and SHs = 131.

^bSWHs and SFs = 17.

The functioning of the personnel

Respondents predict that changes in institutional activities have mainly psychological consequences for the personnel by creating a greater burden; they will also have an impact on their family and personal situation. Employees have to work in a different rhythm, with additional duties, adapt to new conditions, and use other work tools than before.

Prospective assessment of the consequences of the pandemic for institutions and people with ID

In the open-ended question about the long-term effects of the pandemic, respondents provided many answers about its negative consequences in the future (N = 116). These statements were analyzed, and emerging issues were categorized as relating to the institution itself, people with ID, and, to the least extent, to the personnel (Table 5).

Table 5.

Prospective assessment of the consequences of the pandemic for institutions and people with ID (N = 116).

Response categories	N (%)
Threats to the status of the institutions
Reducing jobs	10
Smaller number of new clients and resignation of those who already use services	20
Financial problems
Reduced subsidies, loss of sponsors and donators	13
Increase in the cost of living in the institutions related to the purchase of personal protective equipment and the reorganization of work	5
Changing the way the institution operates
Fewer opportunities for systemic cooperation with other entities and limitations in the development of the institutions	10
Changes in the work model in the future	5
Modification of the institution’s goals to extend the activities aimed at reducing the psychological effects of the pandemic	6
Negative consequences for people with ID
The decline of competencies in people with ID as an effect of isolation and limited activities of the institutions	30
Disruptions in vocational rehabilitation of clients with id, a difficulties with apprenticeships, finding employment, and keeping jobs	15
Inhibition of social development and the development of competencies important for adult life	18
The inability to become self-sufficient and independent from family caregivers, to use alternative forms of living (such as sheltered flats), and benefit from the limited social and cultural life	7
Social exclusion of people with ID, isolation, and withdrawal from social life	20
Lack of motivation, learned helplessness, depressive tendencies, passivity, and certain habits in everyday functioning	8
Increase in the risk of mental and physical diseases and disorders due both the negative emotional experiences of people with ID and the difficulties in accessing therapy and specialist counseling	11
Negative consequences for personnel
Burnout associated with a decrease in motivation and frustration due to difficulties in implementing professional goals	10
Anxiety and other psychological problems due the threat of job loss and salary reduction	5
Disintegration of therapeutic teams	8

The pandemic and the related restrictions, in the opinion of the respondents, will have serious consequences for the status of the institutions and their further financial and organizational functioning. They expect risks related to admitting fewer clients, closure of institutions, and layoffs.

It is presumed, and it is already partially verified in practice, that people with ID will be less likely to return to daycare institutions due to anxiety, worse health, lack of motivation, or becoming used to a different way of functioning (staying at home). In 24-hour care institutions, the mortality of the population is a threat, but also the lack of new clients due to the fear of isolation in the institution. Reduced financing is seen as a consequence of the economic crisis in the country. Respondents predict fewer opportunities for systemic cooperation with other entities and limitations in the development of the institutions. They signal possible changes in the work model in the future, with an increase in therapy implemented in a hybrid form, the introduction of new technologies for conducting classes, and maintaining contact with clients and people from their environment.

The respondents predicted significant changes in the quality of functioning of people with ID, especially in the social dimension. They see many risks associated with the loss of competencies, social exclusion, and isolation. Respondents also predict an increase in the risk of mental and physical diseases and disorders, bearing in mind both the negative emotional experiences of people with ID and the difficulties in accessing therapy and specialist counseling.

Few respondents expect any consequences of the pandemic for the personnel.

Discussion

The presented research analyzed the functioning of the institution, taking into account its organization, clients, and personnel. Activities, problems, and needs were assessed.

The period of almost 1 year of extremely dynamic changes in the course of the COVID-19 pandemic was analyzed. The predicted consequences of the pandemic were also taken into account. The changes were primarily negative for the functioning of institutions implementing certain objectives outlined in their statutory documentation but also created by the people working there and the clients using their services. It can be concluded that the institutions of rehabilitation and support in everyday existence focused their efforts on minimizing the negative effects of the pandemic and the related limitations for people with ID. It required introducing more or less advanced organizational solutions, new working methods, and additional activities. It seems, however, that from the perspective of the needs of these institutions, these efforts cannot compensate for the effects of limitations reflected in the reported problems, both by the people with ID and their informal and formal guardians. These mainly psychosocial problems have emerged in the time period examined but they are also anticipated in the future. They included, inter alia, an increase in difficult behaviors or a decline in competencies, especially in the social sphere. These results confirm the trends described by other authors who indicate unfavorable changes in behavior and psychosocial competencies of people with ID living in various places, including family homes or institutions (Kim et al., 2021a, 2021b; McKenzie et al., 2021; Murray et al., 2021; Neece et al., 2020; Spencer et al., 2021; Wolstencroft et al., 2021; Wos et al., 2021; Yarımkaya and Töman, 2021). It seems that the factor that hinders the mentioned compensation for activity is the instability of the situation and the related changes in activities. This is especially true for daycare institutions, which operate differently depending on changes in the number of infections in the country. By contrast, 24-hour care institutions face the need to protect their inhabitants by ensuring their isolation and coping with its negative consequences. All forms of substitute activity, for example, at home, using materials provided by the personnel, are important, as are remote classes, but they require work in a different rhythm and using different methods than before. People with ID must have certain competencies in this respect such as using the Internet and computers or rely on help from informal caregivers (Bond et al., 2021; Embregts et al., 2021b; McKenzie et al., 2021; Spencer et al., 2021; Yarımkaya and Töman, 2021). If for various reasons there is a lack of activity, a decrease in the level of acquired competencies is more likely, as confirmed by research (Kim et al., 2021a, 2021b; Spencer et al., 2021; Wolstencroft et al., 2021; Yarımkaya and Töman, 2021). Yet, functioning in an open environment, using public places, and interpersonal contacts are key for achieving the goals of the discussed institutions (especially daycare) and as a result social and professional rehabilitation. All of this has been greatly reduced during the pandemic and it is difficult to identify any forms of activity that could compensate for it. The problem of ‘learned passivity’ as a result of long isolation at home and failure to engage in useful activating activities is interesting. This problem has been signaled in the presented research, primarily in the area of the prospective long-term effects of the pandemic. People with ID may be less competent to manage their free time rationally, which leads to boredom and inactivity signaled by their guardians. This issue is mentioned in the literature on the subject concerning ‘normal’ circumstances (Lifshitz and Merrick, 2003; Mihaila et al., 2017).

The pandemic causes anxiety (Honingh et al., 2021; Hughes and Anderson, 2020; Lake et al., 2021; Pajević et al., 2020); disease, severe illnesses, and death are observed in the immediate environment (Hassiotis et al., 2020). People with ID, whose older parents or coinhabitants die, experience this, and it has implications for their life and psychological situation. Negative experiences, including isolation, may be a risk factor for difficult behaviors, mental problems, and withdrawal, as noted here and in other studies (Alexander et al., 2020; Schuengel et al., 2020). The risk of health deterioration is greater since specialists and even primary care physicians are more difficult to access, as mentioned by parents of people with ID. Many healthcare facilities in the country have suspended their stationary activities by switching to remote counseling, mainly by telephone, without the use of video calls. Fully stationary private services are available but very costly. Using remote counseling may be more difficult for people with ID (Courtenay and Perera, 2020; Hughes and Anderson, 2020), if only because of lower communication skills (Bond et al., 2021; Rawlings et al., 2021).

The effects of the pandemic are visible now and predicted in the longer perspective for personnel, both in the professional and personal dimensions (Bradley, 2020), which was confirmed in the present research. Personnel changes, rotation, and layoffs will have a negative impact on the integration of employee teams. Integration is very important in achieving individual goals, as it is associated with good cooperation, knowing the clients, and exchanging information (Embregts et al., 2021b). It is also related to building relationships based on trust between therapists and people with ID.

Protection and activation are addressed by institutions in other countries (Bradley, 2020; Mills et al., 2020; Quidley-Rodriguez and de Tantillo, 2020). Polish institutions have poor material resources, and not always good housing conditions. The financial situation, as the respondents observe and predict, will continue to deteriorate, which will make it difficult to introduce new technologies as a basis for alternative forms of work. These technologies are also not generally available to people with ID. Restrictions in financing and changing forms of support to more modern ones are signaled in other countries (Bradley, 2020) – they are not limited to Poland.

The use of WHO-recommended personal protective measures may be difficult for some people with ID, as observed by the respondents. This requires, first of all, forming habits, as in the case of other self-care activities. This process can be long for some people, and the acquired competencies need to be constantly reinforced (Kim et al., 2021b; Patel et al., 2021; Wolstencroft et al., 2021). Difficulties in the use of personal protective measures by people with ID, noted in the presented research, align with other findings (Alexander et al., 2020; Hughes and Anderson, 2020; Kim et al., 2021b; Spencer et al., 2021). The barrier is not only lower independence in life or physical fitness, but also intolerance of such measures, for example, due to hypersensitivity, discomfort, or difficulties in functioning.

Implications

Implications for practice (the activities of the institutions)

Due to the reduction of social contacts, support in enabling contact with significant people, if necessary remote, for example, by instructing people with ID how to use remote communication devices or by having caregivers use them for people with ID, is important.

It is also important to enable activity, suggest forms available at home when access to rehabilitation and support facilities is limited, for example, developing personal interests, and to support activity outside the home, especially in times of lower risk or in places with fewer people.

From the perspective of mental health and difficult behavior, the emotional and affective states of people with ID should be monitored by institution personnel to provide help in the early stages of its disturbance. People with ID should have easy access to information and personal support, regardless of whether they operate in a protected or open environment. This is especially important in crises, such as the loss of loved ones, illness, or the need for hospitalization (MacGregor, 2021).

Implications for education and policy

Institutions should conduct educational activities (remote or hybrid) for their employees, parents/guardians, aimed at raising awareness of the special needs of ID clients during the pandemic. They should teach about possible forms of activation of these people (e.g. at home), which can strengthen their competencies. They should also highlight the possible negative effects of depriving people with ID of their psychosocial needs and their symptoms, for example, an intensification of difficult behaviors. It is worth organizing, in an accessible form, classes for people with ID aimed at shaping the habits of safe behavior, and classes that help maintain health and physical activity.

Changes to the institution’s work organization, especially in daycare centers with more online classes, are aimed at proven solutions, savings, limitation of direct contacts, and will require staff training in the use of new technologies, but also using new software and supplying equipment (Courtenay and Perera, 2020). It seems necessary to teach people with ID how to use these technologies. Financial limitations, both at the level of institutions and the people with disabilities, will remain a barrier. It will also be necessary to educate informal guardians and use tools that are suited to different levels of cognitive processes and communication skills of people with ID.

From the perspective of the organizational policy of the institution, it may be important to change the goals and methods of documenting the activities of daycare and 24-hour care centers. This will result from the need to address the challenges and threats of the next pandemic and the consequences of the current pandemic.

Alexander et al. (2020) write about individual plans for dealing with COVID-19, including specific risk factors and the needs of each person. Such plans should be an integral part of the plans that are routinely used by daycare and 24-hour care institutions. It will also be important to plan educational activities aimed at maintaining competencies in using protective measures but also coping with loss, due to the increased loss of informal guardians, especially older parents or siblings. McCallion (2020b) draws attention to education in the field of organizing free time that can be useful during pandemic restrictions, especially for maintaining a certain level of competencies of people with ID.

Taking into account the trends predicted by the respondents in the future, consisting in reducing the number of daycare institutions, there is a need to introduce legal and organizational adjustments in the support for people with ID. The need for care is likely to increase as elderly parents and other informal caregivers at risk of complications from COVID-19 may die. It seems, however, that due to lower financial resources, the dominant form of care will be SWHs. It is difficult to expect the development of other living arrangements, such as sheltered flats. Due to the decrease in the proportion of adults with ID in daycare facilities, the burden on informal caregivers is greater, which may result in the need to develop alternative support strategies, such as volunteering (Bradley, 2020). However, the fear of infection will still be an obstacle during the pandemic.

Implications for research

Taking into account the described trends, we predict that the current pandemic will bring changes to the system of rehabilitation and services. It is difficult to predict their scale. This requires further detailed research involving other institutions in the sphere of healthcare, medical rehabilitation, and education for people with ID and their family members. Due to the increased use of technology in the organization of classes (e.g. computers and the Internet), it is necessary to conduct research aimed at identifying the needs, difficulties, and limitations of people with ID using remote services. The studies were carried out in the first period of the pandemic. Certain trends are likely to become more apparent over time, especially in the context of the potential impact of the pandemic in different areas of life of persons with intellectual disabilities or adaptation of institutions to pandemic-related limitations. Longitudinal studies will be most useful here.

Limitations

The interest of the institutions in the research was very low, perhaps as a result of the form of research. It can also be assumed that the respondents were burdened with additional duties related to the current pandemic situation. The data were obtained from people in managerial positions, and therefore on one hand competent to provide information, but on the other hand inclined to present the institution’s activities favorably. Full anonymity was a factor that potentially reduced this tendency. Data collected from other employees, but above all from people with ID themselves, would be a valuable supplement here.

Conclusion

The presented results of this research have shown a significant scope of institutional activity in the field of adapting to the new situation resulting from the COVID-19 pandemic as well as the related needs and problems. They also showed a number of difficulties experienced by people with ID, the clients of the institutions, and the personnel. They mainly concern the limitations of functioning in the social sphere and the reduction of activities important for maintaining the potential of people with ID. They also showed additional challenges and workload for the personnel.

Author biography

Monika Parchomiuk is the author of 9 monographs and over 130 articles. Her research interests include family of persons with disabilities, adulthood, and aging of persons with intellectual disabilities and ASD.