The Direct Support Workforce: An Examination of Direct Support Professionals and Frontline Supervisors During COVID-19.

Direct support professionals (DSPs) and frontline supervisors (FLSs) have critical roles in home and community-based services for people with intellectual and developmental disabilities. Low wages and high levels of responsibility created a long-term crisis in recruitment and retention and are exacerbated by the COVID-19 pandemic. A national sample of DSPs and FLSs were compared on demographics and work-related circumstances using data from the third Direct Support Workforce COVID-19 Survey. Significant differences were found in demographics, hours worked, wages, wage augmentations, and quality of work-life. Policy recommendations to address the worsening workforce crisis are provided.

Parental stress and support perception in southern Italy's households with intellectual disabilities and/or autistic spectrum disorder before and during the COVID-19 pandemic.

The stress experienced by parents of persons with Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) is higher than that of parents of neurotypical children (TD). An important protective factor is the perception of the support received within the family and the social network. The emergency of the COVID-19 pandemic had a negative impact on the health of people with ASD/ID and their families. The aim of the study was to describe the levels of parental stress and anxiety before and during the lockdown in southern Italy's families with ASD/ID persons and analyze how the levels of support perceived by these families. 106 parents, the ages of 23 and 74 years (M = 45; SD = 9), from southern Italy responded to an online battery of questionnaires measuring parental stress, anxiety, perception of support and attendance at school activities and rehabilitation centers, before and during lockdown. In addition, descriptive, Chi-Square, MANOVA, ANOVAs, and correlational analyses were conducted. The results showed that during the lockdown, attendance at therapies and extra-moenia activities and participation in school activities drastically dropped. During lockdown, parents felt inadequate. The parental stress and anxiety were moderate, but the perception of support dropped significantly.

An update of the reported effects of the COVID-19 pandemic on person with intellectual disability and their carers: a scoping review.

BACKGROUND: The effects of the COVID-19 pandemic has been felt by all groups in society and people with intellectual disability are especially vulnerable due to underlying conditions/health problems, multi-morbidity, limitations in understanding, frailty and social circumstances. This places people with intellectual disability, their families and carers at increased risk of stress and in need of support. OBJECTIVE: To update and chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability, their families and carers reported within the research in 2021. METHODS: A scoping review of research published in 2021 across 7 databases. RESULTS: 84 studies met the inclusion criteria, and the findings highlight people with intellectual disability are at a greater risk to COVID-19 health outcomes due to underlying health concerns and access issues. The effects of COVID-19 can be seen from a personal, social and health perspective for people with intellectual disability, their carers and families. However, COVID-19 did have some unanticipated benefits such as: less demand on time, greater opportunity to engage with people of value and building resilience. CONCLUSIONS: COVID-19 presents many challenges but for people with intellectual disability compounding existing obstacles encountered in access issues, service provision and supports available. There is a need to identify and describe the experiences of people with intellectual disability, their families and carers in the medium-long term during COVID-19. Greater supports and evidence of effective interventions to promote health, deliver services and support individual with intellectual disability is needed as there is little evidence of clinical care for people with intellectual disability during COVID-19.

During pandemics the perspectives of people with intellectual disability, their carers and service providers are central to addressing systemic health care inequalities and poor-quality person-centred care.Greater collaboration is needed to learn from pandemics in terms of health and social care policy improvements.There remains a need for large scale studies that are representative of the broad spectrum of the intellectual disability population and examine Long-COVID in this group of people.

Recording of intellectual disability in general hospitals in England 2006-2019: Cohort study using linked datasets.

BACKGROUND: Accurate recognition and recording of intellectual disability in those who are admitted to general hospitals is necessary for making reasonable adjustments, ensuring equitable access, and monitoring quality of care. In this study, we determined the rate of recording of intellectual disability in those with the condition who were admitted to hospital and factors associated with the condition being unrecorded. METHODS AND FINDINGS: Retrospective cohort study using 2 linked datasets of routinely collected clinical data in England. We identified adults with diagnosed intellectual disability in a large secondary mental healthcare database and used general hospital records to investigate recording of intellectual disability when people were admitted to general hospitals between 2006 and 2019. Trends over time and factors associated with intellectual disability being unrecorded were investigated. We obtained data on 2,477 adults with intellectual disability who were admitted to a general hospital in England at least once during the study period (total number of admissions = 27,314; median number of admissions = 5). People with intellectual disability were accurately recorded as having the condition during 2.9% (95% CI 2.7% to 3.1%) of their admissions. Broadening the criteria to include a nonspecific code of learning difficulty increased recording to 27.7% (95% CI 27.2% to 28.3%) of all admissions. In analyses adjusted for age, sex, ethnicity, and socioeconomic deprivation, having a mild intellectual disability and being married were associated with increased odds of the intellectual disability being unrecorded in hospital records. We had no measure of quality of hospital care received and could not relate this to the presence or absence of a record of intellectual disability in the patient record. CONCLUSIONS: Recognition and recording of intellectual disability in adults admitted to English general hospitals needs to be improved. Staff awareness training, screening at the point of admission, and data sharing between health and social care services could improve care for people with intellectual disability.

All-cause and cause-specific mortality among people with and without intellectual disabilities during the COVID-19 pandemic in the Netherlands: a population-based cohort study.

BACKGROUND: Although high rates of COVID-19-related deaths have been reported for people with intellectual disabilities during the first 2 years of the pandemic, it is unknown to what extent the pandemic has impacted existing mortality disparities for people with intellectual disabilities. In this study, we linked a Dutch population-based cohort that contained information about intellectual disability statuses with the national mortality registry to analyse both cause-specific and all-cause mortality in people with and without intellectual disabilities, and to make comparisons with pre-pandemic mortality patterns. METHODS: This population-based cohort study used a pre-existing cohort that included the entire Dutch adult population (everyone aged ≥18 years) on Jan 1, 2015, and identified people with presumed intellectual disabilities through data linkage. For all individuals within the cohort who died up to and including Dec 31, 2021, mortality data were obtained from the Dutch mortality register. Therefore, for each individual in the cohort, information was available about demographics (sex and date of birth), indicators of intellectual disability, if any, based on chronic care and (social) services use, and in case of death, the date and underlying cause of death. We compared the first 2 years of the COVID-19 pandemic (2020 and 2021) with the pre-pandemic period (2015-19). The primary outcomes in this study were all-cause and cause-specific mortality. We calculated rates of death and generated hazard ratios (HRs) using Cox regression analysis. FINDINGS: At the start of follow-up in 2015, 187 149 Dutch adults with indicators of intellectual disability were enrolled and 12·6 million adults from the general population were included. Mortality from COVID-19 was significantly higher in the population with intellectual disabilities than in the general population (HR 4·92, 95% CI 4·58-5·29), with a particularly large disparity at younger ages that declined with increasing age. The overall mortality disparity during the COVID-19 pandemic (HR 3·38, 95% CI 3·29-3·47) was wider than before the pandemic (3·23, 3·17-3·29). For five disease groups (neoplasms; mental, behavioural, and nervous system; circulatory system; external causes; and other natural causes) higher mortality rates were observed in the population with intellectual disabilities during the pandemic than before the pandemic, and the pre-pandemic to during the pandemic difference in mortality rates was greater in the population with intellectual disabilities than in the general population, although relative mortality risks for most other causes remained within similar ranges compared with pre-pandemic years. INTERPRETATION: The impact of the COVID-19 pandemic on people with intellectual disabilities has been greater than reflected by COVID-19-related deaths alone. Not only was the mortality risk from COVID-19 higher in people with intellectual disabilities than in the general population, but overall mortality disparities were also further exacerbated during the first 2 years of the pandemic. For disability-inclusive future pandemic preparedness this excess mortality risk for people with intellectual disabilities should be addressed. FUNDING: Dutch Ministry of Health, Welfare, and Sport and Netherlands Organization for Health Research and Development.

'We don't have the answers': What do we know about the experiences of psychological professionals providing virtual psychological support to people with intellectual disabilities during the COVID-19 pandemic?

BACKGROUND: Government restrictions enforced globally in response to COVID-19 necessitated changes to the delivery of mental health services, with many psychology professionals (PPs) forced to transfer their face-to-face practice to virtual means (telephone/video therapy) overnight. This review explores what is known about the experiences of PPs providing psychological support to people with intellectual disabilities (PWID) during the pandemic. METHOD: Literature was systematically searched and 11 papers were identified, critically appraised and thematically synthesised. RESULTS: Four themes were synthesised from findings: (1) 'Impact at Service Level', (2) 'The Emotional Impact on PPs', (3) 'The Limitations of Virtual Support', (4) 'Unexpected Gains'. CONCLUSIONS: This review highlights the challenges and positives in experiences of PPs, whilst acknowledging the inequalities experienced by PWID. It is hoped that the findings can be used to aid education and training, and inform future practice and policy. Future research is recommended.

Special Care Patients and Caries Prevalence in Permanent Dentition: A Systematic Review.

Due to the increase in the population with special needs and the significant difficulty in their dental management, it is essential to analyze the caries prevalence in this group of patients. The systematic review was conducted following the PRISMA statement. A search was performed on 9 May 2022 and updated on 5 June 2022, in three databases: Pubmed, Scielo, and Cochrane library. Studies involving the analysis of caries in permanent teeth in patients with special needs were included. A total of 1277 studies were analyzed and 21 studies were selected. Quality assessments were performed using an adapted version of the STROBE guidelines. Among the analyzed groups (intellectual disabilities, human immunodeficiency virus infection, schizophrenia, down syndrome, drug addicts, adult heart transplant, kidney disease, diabetic, autism, psychiatric patients, cerebral palsy, and hemophilia), the highest prevalence of caries was observed in patients with intellectual disability, without differences between genders. However, there is a need for more studies with standardized methods for caries diagnosis to further investigate the prevalence of caries in permanent teeth in patients with special needs.

[The situation of people with intellectual and developmental disabilities in the COVID-19 pandemic-risk factors, problem areas, and measures]. / Die Situation von Menschen mit geistiger Behinderung in der COVID-19-Pandemie ­ Risikofaktoren, Problembereiche, Maßnahmen.

Many people with intellectual and developmental disabilities (IDD) were much more affected by COVID-19 than the average population. The morbidity in this population group was significantly higher due to the form of their housing and care as well as disability-associated health factors (such as Down's syndrome). This led, among other things, to a higher incidence of inpatient settings, a higher mortality rate among hospitalized patients, and a higher case fatality rate among certain subgroups. Risk factors were co-diseases such as dysphagia, epilepsy, or mental disorders. In addition, there were health consequences from restrictive exposure prophylaxis measures at the beginning of the COVID-19 pandemic.This overview article describes the main developments in the care of people with IDD since the beginning of the pandemic. New mental problems or an increase in existing mental problems occurred more frequently in people with IDD who were cared for on an outpatient basis or by relatives. People with IDD in inpatient residential facilities were less frequently affected. The main reasons for psychological problems were lack of social contacts, lost work and employment opportunities, the frightening pandemic situation, and the major structural and personnel changes in the facilities at the beginning of the pandemic. During the pandemic, there were also problems with the implementation of therapeutic and preventive measures. On the other hand, especially in the inpatient area, the "slowing down of life" associated with the restrictions at the beginning of the pandemic also had a stress-reducing effect on some of the people with IDD and was perceived by them as something positive. Caregivers had more time for the genuine (i.e., pedagogical) work. Overall, it was shown that health-promoting measures must also take into account the great heterogeneity of the people with IDD and their living conditions during the pandemic.

Moral distress in carers for people with an intellectual disability who died during the COVID-19 pandemic, a template analysis extending the Barlem and Ramos model of moral distress.

BACKGROUND: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. METHOD: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. RESULTS: Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. CONCLUSIONS: This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

The influence of meaningful activities in the quality of life and functional autonomy of adults with intellectual disability: A prospective study during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic might negatively impact the quality of life and functional autonomy of Spanish adults with intellectual disability, and meaningful activities could prevent this negative progression. METHODS: This is a prospective cohort study in Spanish adults with intellectual disability during the COVID-19 pandemic. Quality of life, functional autonomy and functional independence were measured. The meaningful activities studied were structured-leisure, community self-management, and occupational and physical activities. RESULTS: Seventy-three participants were included in the study. Quality of life and functional autonomy significantly deteriorated during the COVID-19 pandemic (all p > .001). Greater participation in community self-management activities before COVID-19 was associated with less detriment to quality of life (ß = -.312; p = .008), while greater participation in occupational and physical activities was associated with less detriment to the performance of instrumental activities (ß = -.317; p = .016; and ß = -.285; p = .030, respectively). CONCLUSION: People with intellectual disability living in residential homes experienced a decrease in their quality of life and functional autonomy during the COVID-19 pandemic. Their involvement in community self-management activities and physical and occupational activities before the pandemic had preventive effects on the detriment to the quality of life and functional autonomy.

The Experiences of Outreach Support Staff Working with People with Mild Intellectual Disabilities during Different Stages of the COVID-19 Pandemic in the Netherlands: A Qualitative Study.

The COVID-19 pandemic profoundly impacted the work of professionals who support people with intellectual disabilities. This study aimed to explore the experiences of outreach support staff supporting people with mild intellectual disabilities in the Netherlands during different phases of the pandemic between March 2020 and May 2021. Overall, seven outreach support staff from three intellectual disability services participated in this qualitative study. Using semi-structured interviews, participants were interviewed on three occasions between December 2020 and May 2021. A thematic analytical framework was used to analyze the interviews. Four overarching themes could be distinguished based on the data: (1) balancing between one's professional and personal life; (2) vaccination as both a stress reducer and a source of agitation; (3) service users: vulnerable versus resilient; and (4) contact with colleagues and service users. These themes provided valuable insights into the experiences of outreach support staff during different phases of the pandemic, both in the enduring impact of the pandemic and its measures on support staff, as well as in terms of how the pandemic and its preventive measures impacted their profession.

Accessibility of child protection investigations during pandemic: A qualitative analysis of court proceedings.

BACKGROUND: Qualitative research using published court records to examine contextual factors that contribute to child protection decisions in cases involving parents with intellectual disabilities is limited, particularly during the COVID-19 pandemic. METHOD: The present study conducted qualitative content analysis on 10 published Ontario court cases to study child protection decision-making between 2019 and 2021. RESULTS: The findings corroborated previous literature with nine out of 10 cases resulting in loss of child custody. Four major themes emerged from content analysis: (1) Impact of COVID-19 pandemic on cases; (2) Systemic barriers to accessibility; (3) Attitudes and bias toward parents with intellectual disabilities; and (4) Ultimate reliance on intellectual disability status for final custody decision. CONCLUSIONS: Conducting content analysis on published court cases is useful in learning about accessibility barriers for parents with intellectual disabilities and may help in understanding the impact of the COVID-19 pandemic on the child protection system.

Risk for Severe COVID-19 Outcomes among Persons with Intellectual Disabilities, the Netherlands.

The COVID-19 pandemic has disproportionately affected persons in long-term care, who often experience health disparities. To delineate the COVID-19 disease burden among persons with intellectual disabilities, we prospectively collected data from 36 care facilities for 3 pandemic waves during March 2020-May 2021. We included outcomes for 2,586 clients with PCR-confirmed SARS-CoV-2 infection, among whom 161 had severe illness and 99 died. During the first 2 pandemic waves, infection among persons with intellectual disabilities reflected patterns observed in the general population, but case-fatality rates for persons with intellectual disabilities were 3.5 times higher and were elevated among those >40 years of age. Severe outcomes were associated with older age, having Down syndrome, and having >1 concurrent condition. Our study highlights the disproportionate COVID-19 disease burden among persons with intellectual disabilities and the need for disability-inclusive research and policymaking to inform disease surveillance and public health policies for this population.

The Impact of the COVID-19 Lockdown on the Cognitive Functions in Persons with Intellectual and Developmental Disabilities.

The main objective of the research was to compare the cognitive functioning of a sample of persons with IDD (Intellectual and Developmental Disabilities) before the pandemic (2019) and after the pandemic (2020 and 2021), and to analyse the impact according to age and level of IDD impairment. The participants were 92 persons with IDD, of whom 43 were female (46.7%). The mean age in 2019 was 47.07 years (SD = 6.78). All the participants were living with family members. The CAMCOG-DS test from CAMDEX was used to assess the cognitive functions. The results indicate a worsening in cognitive functions (attention-concentration, abstract thought, language, and praxis) after lockdown, in both the total group of participants and the mild-moderate impairment group, and in both age groups. In the severely affected group, we found an improvement in the cognitive functions assessed after lockdown. These results are similar to those found in people with dementia and in the general ageing population. Results were discussed in relation to the consequences of isolation in people with IDD, as well as providing guidelines for future pandemic situations.

Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations.

BACKGROUND: Family carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Governmental Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Governmental sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers.  METHODS: This study employed a qualitative design using focus groups with participants (n = 24) from five Non-Governmental Organisations across the UK and Ireland. A focus group guide included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis. FINDINGS: Four themes were identified (i) 'mental and emotional health', (ii) 'they who shout the loudest' (fighting for services), (iii) 'lack of trust in statutory services' and (iv) 'creating an online support programme'. Mental and emotional health emerged as the most prominent theme and included three subthemes named as 'isolation', 'fear of COVID-19' and 'the exhaustion of caring'. CONCLUSIONS: The COVID-19 pandemic has increased the vulnerability of family carers who were already experiencing difficulties in accessing services and supports for their families. While Non-Governmental Organisations have been a crucial lifeline there is urgent need to design services, including online support programmes, in partnership with family carers which adequately address their needs.

Resilience, and positive parenting in parents of children with syndromic autism and intellectual disability. Evidence from the impact of the COVID-19 pandemic on family's quality of life and parent-child relationships.

Family quality of life (FQoL) outcomes collected during the first year of COVID-19 has been combined with 2018 data to estimate the outbreak's impact on parental outcomes on a sample of 230 families with syndromic autistic children and those with intellectual disabilities (IDs). Despite challenges imposed by the COVID-19 outbreak, our study found that FQoL outcomes reported by participating parents during the first year of COVID-19 appears to be similar to ratings from a prepandemic study of families with the same conditions. Parents of children in our sample generally displayed a stable functioning trajectory as measured by the validated FQoL instrument. Across syndromic autistic groups considered, families reported that their relationships with their children were positive. Our findings provide evidence of families' resilience which might explain the presence of positive parent-child interactions during COVID-19. Exploring mechanisms which would explain how families with autistic and ID children confront, manage disruptive experiences, and buffer COVID-19 induced stress is a fruitful direction for future research.

The impact of lockdown on young people with genetic neurodevelopmental disabilities: a study with the international participatory database GenIDA.

BACKGROUND: Previous publications suggested that lockdown is likely to impact daily living issues of individuals with intellectual disabilities. The authors notably suspected an intensification of behavioural, eating and sleep problems. METHODS: To test these hypotheses, we conducted an international online survey about the impact of COVID-19-associated first lockdown on people with genetic neurodevelopmental disorders. This survey was carried out using GenIDA, an international participatory database collecting medical information on genetic neurodevelopmental disorders. Patients' relatives took part in this online survey from 30/04/2020 to 09/06/2020. This survey adapted from GenIDA standard questionnaire requested information on diagnosis, lifestyle and was based on yes/no answers to questions regarding behaviour, diet, and sleep, in the 6-months period before lockdown and during lockdown. We also asked relatives to evaluate the intensity of these problems by severity level. Finally, relatives could freely comment in open fields on the medical and/or quality of life problems they had encountered during lockdown. RESULTS: In total 199 participants-144 children and 45 adults-with neurodevelopmental disorders (intellectual disability (79.4%) and/or autism spectrum disorder (21.6%)) of various genetic origins, with near-equal male/female (96/103) contribution and originating mainly from Europe and Northern America, were included. The average lockdown duration at time of the survey was 57 days. We did not find differences in the frequency of behavioural, eating and sleep problems before and during lockdown. Moreover, there was no apparent difference in the intensity of eating and sleep disorders between both periods. However, for persons with behavioural problems at both periods, relatives reported an increase in aggressivity, self-aggressivity, depressiveness, stereotypies, and restricted interests during lockdown, all of which might be interpreted as consequences of a lack of stimulation or a reaction to unexpected changes in daily habits. CONCLUSIONS: Our results support previous studies that suggest that the negative impact of lockdown does not depend on the intellectual disability per se but on the associated comorbidities such as behavioural disorders. This study addresses the need for prevention of behavioural disturbance in the vulnerable population with genetic neurodevelopmental disabilities.