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Many people with an intellectual and developmental disability (IDD) are biologically, socially, and economically/politically vulnerable to developing SARS‐COV‐2 (COVID‐19) compared to the general population. Most governments have developed public‐health policies and strategies to address the challenges that COVID‐19 has presented. These policies and strategies have been based upon the general population and in fact could be detrimental to the health and well‐being of people with IDD. This paper provides a review of the key learning points emerging from the COVID‐19 literature, together with guidance for the provision of services and government interventions for people with an IDD for future pandemics. Using guidance from the Joanna Briggs Institute, a scoping review was used to explore the current literature (scientific and grey) on IDD and COVID‐19. Three core themes emerged from the review. Prevention/protection: User‐friendly accurate accessible information, handwashing and social distancing, Personal Protective Equipment, shielding, track and trace, testing, vaccine compliance/hesitancy, and training. Mitigation: Making reasonable adjustments both to where people live, and to community healthcare/clinical practice; and the use of technology as a pandemic‐response strategy. Treatment/Management: Access to acute hospitals and lifesaving equipment, using a suitable clinical fatality assessment instrument, stopping Do Not Resuscitate notices, individualised care plans and hospital passports, family/paid carers to support people in hospitals; and use of telehealth in clinical care. This is the first international scoping review that provides a narrative synthesis of emerging themes related to the COVID‐19 pandemic and people with an IDD. This paper highlights themes related to preventing, mitigating, and treating/managing the care of this population during the COVID‐19 pandemic, which can inform future public‐health policies. This paper also exposes the negative impacts of public‐health interventions in both High‐Income Countries and Low‐Middle Income Countries for this population including lapses in upholding human rights. These data provide a basis for learning from the COVID‐19 pandemic in planning for future pandemics. [ABSTRACT FROM AUTHOR]

This paper presents current information on policy developments, service design, best practices, and approaches to empower the users of health and medical care services for people with intellectual disabilities in Poland. Polish regulations allow systemic support to be provided for all people with disabilities. However, Polish patients with intellectual disabilitiy (PwID) and their caregivers face many barriers. Although a key obstacle is the lack of a standard definition that approaches disability in an interdisciplinary way, PwID are also more likely to experience difficulties in personal communication in medical settings and less likely to encounter specialists prepared to work with this group. There is also a need to pay greater attention to the expectations of PwID. To facilitate a holistic approach to diagnosis and therapy, there needs to be coordination between different specialists, including medical staff, paramedics, psychologists, and teachers. Providing personal communication training for medical personnel, as well as developing dedicated procedures for PwID in primary health care, clinics and hospitals, will improve equal access to health and health literacy for all in Poland. Even so, it is important to respect the autonomy of PwID and the commitment of caregivers. [ABSTRACT FROM AUTHOR]

With the increasing number of adults with intellectual disabilities (ID) surviving into old age governments, provider agencies, and practitioners are recognizing the insufficiencies of available information related to the interaction of the aging process with lifelong disability, the incidence of disease and secondary conditions with advancing age, and the means to provide quality medical and health care. These insufficiencies were noted by a World Health Organization report that identified a need for more research on the health of older adults with IDs and reports from two meetings held by United States Public Health Service and the United States Surgeon General that examined health disparities among adults with ID. This paper reports the process and results of the Tampa Scientific Conference on Intellectual Disabilities, Aging, and Health, a meeting held in 2002 specifically to examine health issues germane to older adults with ID. The meeting produced a long-term research agenda for determining more effective physical and mental health outcomes for aging and older persons with ID and recommendations for aging-related medical and health surveillance practices that would improve the overall health status of adults with ID. [ABSTRACT FROM AUTHOR]

An invitational conference organized by the Netherlands Society of Physicians for Persons with Intellectual Disabilities (NVAVG) and the European Association of Intellectual Disability Medicine (MAMH), in collaboration with the Erasmus Medical Center's Department of Specialist Training for Physicians for People with Intellectual Disabilities, had as its aim the development and issuance of an European manifesto on adequate health care for people with intellectual disabilities (ID). This paper provides an overview of the basis for the conference and the manifesto and lays out recommendations for the implementation of the manifesto's main points. The group's product, the European Manifesto on Basic Standards of Health Care for People with Intellectual Disabilities, summarizes the core elements of adequate health care for individuals with ID, and offers guidance on how Europe's nations may address deficiencies in health provision for people with ID. The manifesto's main points include a call for greater available and accessible health care, increasing the competencies in ID of health professionals, educators, and researchers, a greater reliance on a multidisciplinary approach to health care, more specialist services, and a proactive emphasis on personal health management. [ABSTRACT FROM AUTHOR]

The need for speech and language therapy (SLT) for people with Down syndrome (DS) is well documented. However, there is a significant disparity between research and practice. This study addresses two of the three pillars of evidence‐based practice by 1) quantitatively profiling some key features of the 2019 public SLT service in Ireland, and referencing this against current best evidence; 2) asking parents, and adults with DS what supports they need in relation to an adequate SLT service. Adults with DS (n = 33) and parents of those with DS (n = 557), completed an anonymous survey online. The function of the survey was to collect information on: SLT service provision; levels of satisfaction with services; and SLT supports required. Based on parent responses, only 44% of participants (n = 253) were offered public SLT services in 2019. The mode waiting time was 1–2 years and the average number of sessions across the age groups was 5 per year. There was a strong association between age and number of sessions. Individual therapy was the most common model of service. A total of 40% of parents reported a 0 level of satisfaction. Seven key themes emerged from the qualitative support data. None of the participating adults received public SLT services in 2019. Our aspiration for evidence‐based SLT practice is far from being realized. The average number of sessions reported, does not in any way approximate the intervention intensity specified in evidence‐based interventions. Our limited service, at all ages, has detrimental implications for people with DS and our negligible adult service is in breach of human rights. Targeted, strategic investment is needed to allow practice to be aligned with best evidence; to support and treat people with DS effectively; to allow them to reach their maximum potential; and to exercise their right to communicate. [ABSTRACT FROM AUTHOR]

Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic‐based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID. [ABSTRACT FROM AUTHOR]

Planning for the future is important for individuals with intellectual and/or developmental disabilities (I/DD) and their families. When caregivers are no longer able to provide support, individuals with I/DD may experience loss of services or benefits, residential or employment‐related disruption, or other adverse consequences. Up until now, most future planning related interventions and approaches have been focused on directly supporting families and individuals with I/DD. We present findings from a training intervention designed for professionals who work with individuals with I/DD and their families, suggesting that future planning be included in service provision and community outreach. Training participants increased their confidence in helping families plan and their likelihood to take action after participating in a 1‐day training. We discuss the implications of developing disability professionals as allies and resources to families as they engage in future planning activities. [ABSTRACT FROM AUTHOR]

The need for quality of life, both as a concept and as a measure, to be applied to policy and practice has been noted in the disability literature for several years. In 2012, Schalock and Verdugo introduced a conceptual model to help service organizations evaluate if congruence exists among their systems, policies, and practices and, if misalignments exist, to make changes through policy and systems change. Their model focuses on two levels, system-level processes and organization-level practices, at three consecutive stages of use: inputs, throughputs, and outputs. In this article, the authors extend the work of Schalock and Verdugo by adding a third level of application, individual- and family-level living, and propose the inclusion of outcomes as a fourth stage of use representing a consequence of outputs. We recognize the dynamic interaction among all components of the conceptual framework and, like Schalock and Verdugo, argue for alignment both vertically (system, organization, and individual and family living levels) and horizontally (inputs, throughputs, outputs, and outcomes) within our revised conceptual framework. Based on this, the authors propose that quality of life outcomes (the ongoing effects of outputs) should be an ultimate focus of service organizations and policy development if quality of life is to be enhanced for individuals with intellectual and developmental disabilities and their families. [ABSTRACT FROM AUTHOR]

Healthcare pathways are a relatively new approach to delivering care in intellectual disability services. The authors endeavored to ascertain and explore successes and challenges in the implementation of care pathways in a National Health Service adult intellectual disability service in Leicestershire, UK. Data were obtained from a variety of sources including observations of multidisciplinary team meetings, issue logs, and feedback from health professionals. Constant comparative analysis identified 10 themes: communication between health professionals; clarity and dissemination of relevant documentation; multidisciplinary working; role of health professionals; role of administrative staff; locality differences; information technology systems; care pathway procedures; attitudes toward care pathways; and impact on clients. It was found that a new implementation of care pathways approach to service delivery in the healthcare setting can be challenging for health professionals. Some of the challenges were generic to service change and could be addressed through careful and organized preplanning of the implementation process. Others, such as organizational culture and attitudes within the organization, were contextual and may be unique to each service and warrant significant advance consideration when attempting implementation. [ABSTRACT FROM AUTHOR]

Many families provide lifelong support to their relative with an intellectual disability. However, relatively little information is available for national populations on the characteristics of the people for whom these families care and the supports they receive or need. A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995 and records details of those living with family carers. In Northern Ireland, regional databases provide similar information. Using both sources, data were obtained on over 12,500 people living with family carers; half of whom lived with two parents, around 30% with a lone parent, and just under 20% with another relative. More people in Northern Ireland were identified as living with family carers, which was attributed mainly to less available residential alternatives. Only a minority of carers received respite breaks and domiciliary supports although higher proportions required them. The authors conclude that family care arrangements have received relatively little attention within government policy making, and hence service provision has been largely reactive. Future research should focus on the changing needs of carers over time and how they can be better supported in their role. [ABSTRACT FROM AUTHOR]

As increased attention has been directed toward the disparities experienced by people with intellectual disabilities in achieving positive health outcomes, the importance of promoting the active involvement of people with intellectual disabilities in efforts to reduce such disparities and promote positive health and wellness outcomes has been acknowledged by researchers and policymakers. This parallels the larger movement within the disability field to promote the self-determination and empowerment of people with intellectual disabilities. The authors more explicitly discuss the implications of self-determination, as it has been conceptualized in the disability field, for promoting positive health and wellness outcomes in people with intellectual disabilities. They review the current research on self-determination and its impact on health, as well as the implications of this research for the development of strategies that promote self-determination in the achievement of health and wellness outcomes in people with intellectual disabilities. The authors posit the need to extend an understanding of the implications of self-determination for promoting health in people with disabilities not only to the disability field, but also to the medical and public health fields. They also provide recommendations for future research and practice. [ABSTRACT FROM AUTHOR]

Various conceptional dimensions of aging are relevant for epidemiological research on health issues for individuals with intellectual disabilities (ID). In a review of the literature results of mortality and morbidity studies are documented and discussed regarding the actual health status of elderly adults with ID. Most of these studies are based on indirect assessments with several sources for detection bias. As a consequence, health problems are systematically undocumented and underreported for this target group and affect the effectiveness and adequacy of health service delivery. Direct assessment procedures and methods in epidemiological research are suggested as one means to improve research used to support health care planning. Such a methodological target can be combined with the more important goal on service level of finding and helping persons with unrecognized treatable conditions. [ABSTRACT FROM AUTHOR]