Journal of Policy and Practice in Intellectual Disabilities最新文献

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.

Quality of Life (QOL) has been used as a sensitising concept for decades, inviting all to consider the potential for individuals with intellectual and developmental disabilities to live a life full of meaning and purpose. This article presents the outcomes of our deliberations on domains of QOL undertaken for a study investigating lives of young adults with Down syndrome. Various groups have published domains and from these we distilled a list of six: Physical well-being, Emotional well-being; Self-determination; Material well-being; Personal beliefs and development; and Social inclusion. Our synthesis of domains raised two issues for further deliberation in the community of QOL scholars in the field of intellectual and developmental disability: the place of Information and Communication Technology (ICT) and Rights. ICT has not been considered as a domain but we argue it could be. Rights have been included as a domain by some researchers in previous conceptualisations but we do not. Instead we suggest they may be better placed as an underpinning principle, with fundamental impact on all aspects of QOL. A conclusion we are left with is that domains, while helpful for research, can never be a fixed list. What matters to individuals and society in general in framing lives of meaning and purpose will change over time. Even so, there is still value and need for setting domains for specific research studies.

Little research on the experiences of persons with intellectual disabilities (ID) during the COVID-19 pandemic has been done by persons with ID themselves. Moreover, little research focuses on group home residents with ID, despite the greater risks they faced of COVID-19 transmission and mortality. To address these gaps, researchers with and without ID organized qualitative interviews and a focus group discussion with six group home residents with ID in Massachusetts. Study participants identified as self-advocates and reported feelings of frustration and isolation that at times were exacerbated by community access restrictions imposed by their group homes. All participants described group home staff efforts to keep them physically safe, while some reported lapses that contributed to their risk of contracting COVID-19. None described comparable efforts to address their social and mental health needs. All participants received information about COVID-19 and related precautions from group home staff, but none reported receiving information about heightened risks of contracting COVID-19 while living in group settings. Also, notwithstanding pandemic-related challenges, most participants identified at least one positive change in their lives, either by changing where they lived or worked or by forging new relationships. Participants' perspectives, as presented to researchers with ID, shed unique light on the range of group home residents' pandemic experiences, signal opportunities for interventions addressing social isolation, and underscore the efficacy of inclusive research methods in eliciting information from research participants with ID.

The study investigated the influence of the humanistic orientation on the perspectives of service providers working with individuals with intellectual and developmental disabilities (IDD) and the self-evaluation of service users. The humanistic orientation, which emerged in the 1990s, emphasizes the rights of people with IDD to lead a meaningful life based on their personal needs and desires. However, challenges persist as some service providers prioritize the acquisition of normative life skills over fostering autonomy. The study was based on quantitative methodology and included 61 service providers and 95 of their service users. The study's findings indicate that the humanistic orientation was endorsed by nearly one half of the service providers compared with one third who endorsed a medical orientation. Those endorsing a humanistic orientation also reported that their service users had higher levels of efficacy than those with a medical perception of IDD. Positive correlations were found regarding the assessments made by service providers and their service users on self-efficacy. Findings suggest that a humanistic orientation encourages optimism among service providers and a positive dyadic interaction between providers and users. It is suggested that the humanistic orientation be applied as a guiding principle underlying the daily support provided to adults with IDD.