Journal of Policy and Practice in Intellectual Disabilities最新文献

Over 7.5 million people (approximately 2% of the US population) with intellectual and developmental disability live in the United States with the vast majority living in the community and accessing healthcare from the general healthcare system. For over two decades, there has been a national recognition that people with IDD experience poorer health outcomes and experience barriers in access to healthcare. We describe the important legal and financial frameworks that influence access to health care for people with IDD in the US, including a summary of major federal laws and insurance programs that have shaped the landscape of health and social care in the community, evolving trends in payment models, and the risks and benefits of these models. Further, we provide a description of health care delivery models which have been developed to support healthcare for people with disabilities including coordinated care delivery models. Clinical training and support for non-clinicians to attend to the particular health care needs of the population with IDD is critical yet is not widely available. Additionally, there remain significant access and quality gaps in healthcare for people with IDD. We conclude with a call for advances in health care quality, access and efforts to advance research and data collection to promote health equity for this population.

Ensuring families of children with intellectual and/or developmental disabilities (e.g., developmental delay, intellectual disability, autism) can access early intervention and support is important. Current research indicates there are family-level socioeconomic disparities of access to early intervention and support, however, there is limited evidence on the relationship between neighbourhood-level socioeconomic deprivation and access to support. Therefore, the aim of this study was to examine the relationship between neighbourhood deprivation and families' access to and unmet need for early intervention and support. We collected cross-sectional data using a survey of 673 parental caregivers of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Multiple regression models were fitted for three early intervention and support outcome variables: access to early intervention; access to services across education, health, social care, and other sectors; and unmet need for services. Each regression model included a neighbourhood deprivation variable based on the index of multiple deprivation and five control variables: family-level economic deprivation, country, caregivers' educational level, developmental disability diagnosis, and informal support sources. Neighbourhood deprivation was a significant independent predictor of access to services, but neighbourhood deprivation was not a significant predictor of access to early intervention or unmet need for services. Families living in the most deprived neighbourhoods accessed fewer services than other families. Socioeconomic disparities of access to early intervention and support, at both a neighbourhood and family level, exist for families of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Future research should focus on policy and other interventions aimed at addressing socioeconomic disparities at the neighbourhood and family level, to ensure equitable access to early intervention and support.

Legislations for persons with disabilities emerged in the 1990s in India, providing them with rights and entitlements. Aligned with the UNCRPD, the Rights of Persons with Disabilities Act (2016) supports improved programmes and services. There are no exclusive policies for those with intellectual and developmental disabilities. Different government departments and non-government organisations provide services including centrally sponsored programmes to persons with disabilities and enable them to exercise their rights. For example, rehabilitation and provision of aids and appliances lie with the Ministry of Social Justice and Empowerment, right to education is with the Ministry of Education, and, early intervention and health services and related supports are with the Ministry of Health. In India, non-government organisations also play a vital role in health care services. In this paper, we discuss the existing health care systems including medical services in India for persons with disabilities with a specific focus on persons with intellectual and developmental disabilities. The discussion include how the system was evolved and what is in place today, the coverage, strengths, and limitations in the system. We have tried to provide a comprehensive description of existing policies, and practices of health care as well as the cultural influences with regard to health care for people with intellectual and developmental disabilities in India.

The Norwegian health care system is built on individual rights and the principles of universal access, decentralization, and free choice of provider. Norway has universal health coverage, funded primarily by general taxes and by payroll contributions shared by employers and employees. Local authorities at the municipal level organize and finance primary health care services according to local demand and within national frameworks. Habilitation services are offered both in the primary health care and as a part of the specialist health services. They offer both inpatient and outpatient services for people with intellectual/developmental disabilities (IDD). National guidelines, known as Good health and care services for people with IDD, have recently (2021) been launched after various reports over the years of serious breaches and challenges in the health and care services provided to people with IDD.

This article considers the contributions from the field of Disability Studies to the conceptualization of Quality of Life (QOL) for people labelled with Intellectual Disability (ID). We suggest four elements from the field of Disability Studies that may be incorporated into an evolving QOL paradigm. The first element concerns the meaning of disability itself. Those working in contemporary Disability Studies identify societal obstacles and points of inaccessibility as sources of disablement while also recognizing the experience of difference. We suggest this understanding of disability as an interaction between a person and the social world/environment may be included more explicitly in QOL conceptualization. A responsive and adaptable definition of disability in the QOL paradigm is recommended. The second element is the recognition of relationality. The field of contemporary disability studies challenges the value of considering a person's disability as a solitary medical experience and questions the goals of independence, instead considering the value in interdependence and community. This could be included in the QOL paradigm by further emphasizing the importance of relationships and contributions of those labelled with ID. The third element is participatory design and epistemic justice, making space for people labelled with ID to contribute to research and direct the course of their own lives and supports. This element of self-determination is important to QOL but an increase in participatory research, service, and support design in the field is recommended. The final element is intersectionality, the idea that the experience of disability must be understood in the context of other points of identity or marginalization such as race, gender, and sexuality. We recommend that the QOL paradigm should allow for these additional elements to be included in further design and research in the field.

This paper aims to give a short description of Swedish healthcare provision for persons with intellectual and developmental disabilities (IDD). Swedish persons with IDD should have access to the general healthcare system on the same terms as the general population, and thereby enjoy equal opportunities for healthcare of good quality. Reports from government agencies and interest groups, however, describe a decentralised and fragmented healthcare system that requires significant coordination; a lack of adjustments; a lack of specialised healthcare professionals; and gaps in healthcare provision. Research in recent years has reported unequal access to planned healthcare; excess mortality and premature deaths; and insufficient or inadequate support in end-of-life care. We conclude that health inequalities and healthcare challenges faced by Swedish persons with IDD might be caused by obstacles at several structural levels. Allowing persons with IDD to access timely and adequate healthcare requires the development of better opportunities for coordination of healthcare and social services, as well as training for healthcare professionals and direct support staff.

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.

Quality of life (QOL) has become an increasingly important topic in the field of intellectual and developmental disabilities. Those efforts have included the structuring of models of QOL and more recently Family Quality of life (FQOL). The time has arrived to examine other developments and consider their place in a QOL paradigm. In this article, we have described one of the aspects of QOL that does not appear to be formally or directly structured into models of QOL, namely the role of the humanistic perspective as “a lighthouse” concept for the perception of QOL/FQOL and a vehicle for its application in practice. It is recognized that many researchers and practitioners have considered or practised a humanistic approach but the core beliefs and elements on humanism have received less specific or detailed attention in the QOL literature. This article proposes humanistic philosophy to be the basis for defining humanistic theoretical principles and guidelines for practice, and to be an important vehicle for operationalizing and applying quality of life.

Inclusive research—in which people with an intellectual disability both collaborate with researchers and work as researchers themselves—has gained increased attention over the last three decades. Although the foundational principles of conducting inclusive research are well-established at this point, there is a relative dearth of insights concerning the underlying reasons for collaborating as part of inclusive research projects. Therefore, this study sought to identify the reasons why researchers with experiential knowledge (n = 9), academic researchers (n = 8) and principal investigators (n = 10) collaborate within inclusive research projects. All 27 participants were interviewed individually, in order to explore their reasons for collaborating within one of the six inclusive research projects, which encompassed a range of research avenues within the field of intellectual disability research. A thematic analysis was conducted to gain insight into these reasons. For the three groups of participants, several themes emerged, such as experiencing full participation (researchers with experiential knowledge), making research (processes) better suited to the needs of participants with an intellectual disability (academic researchers) and striving for equivalence (principal investigators). Understanding why people collaborate within inclusive research projects is important for facilitating collaborative partnerships, which are a precondition for inclusive research projects.

The life expectancy of persons with intellectual disability is increasing, and this is often occurring concurrently with the aging of their long-term parental carers. Research in both Australia and around the world indicates that proactive post-parental care planning is not widely implemented, and transitions primarily happen suddenly following a personal crisis for the primary caregiver. Little focus in Australia has been placed on identifying the barriers that inhibit post-parental care planning in rural areas, specifically in the context of the newly implemented National Disability Insurance Scheme. This paper examines the factors that limit disability services and their staff in supporting successful post-parental care planning for individuals with intellectual disability and their aging carers in rural South Australia. Small focus groups were conducted with three groups of rural disability support workers using online technologies to assist with the participants' geographic disparity. A semi-structured interview guide was developed prior to commencement and was used to initiate discussions on key points. A thematic analysis methodological approach was used for data analysis. There were three themes identified through the analysis; Recruitment; Provision of Care; and Retention. The key findings relating to these themes are presented and supported with exemplar quotes. This research proposes three recommendations for policy or practice change: developing a national advertising campaign for new disability staff that positively emphasizes the high-level skillset need for proactive planning; supporting rural disability providers to collaborate to establish shared teams of staff with expertise in post-parental care planning; and, using incentive payments to retain staff with these invaluable skillsets in the disability sector.