Covid 19 Pandemic Experiences Among Caregivers of Persons with Intellectual Disability.

An online survey on experiences of 47 caregivers of persons with intellectual disability during COVID 19 pandemic was carried out to find out their experiences, with the aim to understand the focus areas of challenges, so as to organise need-based support systems. A validated questionnaire was used to collect data. The participants belonged to different states of India with varied socio-economic backgrounds. The results revealed that most of them experienced challenges in supporting persons with intellectual disability. Many found online classes beneficial, while some caregivers had difficulty in keeping the person occupied or managing challenging behaviour. Some caregivers were happy to get more time to spend with the person with intellectual disability at home. The outcome of this study suggests that irrespective of the background, the families faced challenges, the needs were varied and therefore specific efforts are to be taken to support the families so that they are prepared.

COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

Community managed services for persons with intellectual disability: Andhra Pradesh experience.

In resource poor settings innovative and bottom-up approaches are required to provide services to people with with disabilities. In this context, the present paper explains a community-based model of manpower development and coordination of services for people with intellectual disabilities in unified state of Andhra Pradesh in India. Women with disabilities from the village were identified, and those willing to be trained to work as community resource persons (CRPs) were selected and given hands-on training in a phased manner. A total of 130 women were trained in five groups of 25-30 per group and were deployed in the community to screen, identify and refer children with intellectual disabilities. The training content included basic stimulation and interface with functionaries of other government departments of health, education and welfare to ensure comprehensive service delivery. Neighbourhood centres (NHCs) were established where the CRPs could meet with families collectively. The results indicated that the CRPs were welcomed by the families. The NHCs established primarily as recreation centres, promoted inclusion and functioned as information dissemination centre. The services provided by the CRPs were owned and monitored by the Women's self-help group and the disability groups thus ensuring sustainability of the model.

Perceptions of teachers and parents on the cognitive functioning of children with severe mental disability and children with congenital deafblindness.

This article reports Phase I results of a questionnaire study on the perceptions of US teachers and parents on the cognitive functioning of children with severe mental disability and children with congenital deafblindness, ages 4-12 years. Teachers were more likely than parents to report emerging skills and to provide examples of how the skill was being taught. Teachers and parents of children with severe mental disability had different perceptions about how children demonstrated understanding of cause-effect, object permanence, memory, incidental cues, reasoning and creativity. Teachers and parents of children with congenital deafblindness differed in their perceptions of how children demonstrate understanding of incidental cues and exhibit reasoning. Both teachers and parents expressed concern about whether choice making was meaningful. Novelty was reported to be a motivating factor for children with severe mental disability, while familiarity was cited as motivating for children with congenital deafblindness. Teachers and parents of all children cited consistency, routine and repetition as important to learning.

Analysis of educational support systems for children with mental retardation and autism spectrum disorders.

Children with autism spectrum disorders (ASDs) have the right to education. In India, ASDs are covered by the National Trust Act, which focuses on guardianship. Education is predominantly provided by non-government organizations and varied models are used in educating the children. This study aimed to compile information on the current educational models and to find out the feasibility for replication. The major models found to be in use were: special schools, inclusive schools, home-based instruction and units established by parent groups. The choice of model depended on the child's level of functioning and parental aspirations. About 46.8% preferred home-based instruction, while 25.8% were enrolled in special schools and 19.4% were in inclusive schools. All children initially needed home-based training. Picture activity schedules, discrete trial training, sensory integration and structured environment were found to be effective in the education of children with ASDs. Although children improved with home-based instruction, parents expressed stress. About 73% of the parents were eager to send their children to a suitable school, but dissatisfied with the existing facilities. Recognizing ASDs as a disability in the Persons with Disabilities Act (1995) will strengthen and promote the education of children with these conditions.