Search

In this article, we describe the healthcare system for people with intellectual disabilities (ID) in the Netherlands. The general background about healthcare for people with ID is the same worldwide: their health needs are often unrecognized and unmet. We delineate, from a historical perspective, the steps the Netherlands has taken to change the situation for them. The Netherlands crossed a milestone in 2016 when it ratified the UN Convention on the Rights of Persons with Disabilities. Despite challenges in establishing numbers, an estimated ID prevalence of 1.45% was determined. The Dutch healthcare system has different levels, is funded through six distinct laws, and is complicated. The Netherlands has a spectrum of disability care services that increasingly collaborate in shaping the care of people with ID. People with ID and their representatives are increasingly involved in the process of shaping this care. The general practitioner plays a central role in the Dutch healthcare system, serving as the gatekeeper to medical specialists. Furthermore, the Netherlands recognizes the role of a physician for people with ID as a medical specialization. The core competencies of the ID physician include knowledge of the etiology and consequences of ID and associated health problems. The ID physician also knows how to deal with diagnostic and therapeutic barriers. Key challenges facing ID healthcare in the Netherlands include difficulties supporting people with ID due to the increasing complexity of society, concerns about continuity of care at the transition age (18−/18+), inadequate reach of population screening programs for people with ID, and limited availability of (routine) data for research on the ID population. The Dutch government encourages research in the ID field to overcome these challenges by financially supporting academic collaboratives. Substantial progress has been made, but key challenges remain, showing that there is still great room for improvement. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

To verify the effectiveness of experimental occupational therapy plus intensive standard rehabilitation compared to intensive standard rehabilitation alone on the reintegration to social activities of complex patients three months after hospital discharge. Patients with a score ≥ 9 on the Rehabilitation Complexity Scale at admission to an intensive rehabilitation ward were randomized to the control or experimental group. Both groups received intensive multidisciplinary rehabilitation aimed at recovering independence in the basic activities of daily life (ADL). The experimental group also received experimental occupational therapy services to address goals identified through the administration of the Canadian Occupational Performance Measure (COPM). Experimental occupational therapy began during the in-hospital phase and continued in the home-based setting. It consisted of teaching strategies, recommending aids, and providing personalized information regarding available community support. Ninety-two individuals with a mean age of 65 years (female 44.6%) were enrolled. The experimental group significantly improved participation measured by the Reintegration to Normal Living Index (mean changes 8.61, 95% CI: 1–16.23, p = 0.027). The performance and satisfaction scores of the COPM, both during hospitalization and after discharge, and independence in ADL also improved. No differences in mood disturbances were found. Early post-discharge occupational therapy integrated with multidisciplinary rehabilitation improves the social participation of complex patients. Future research should investigate the concrete feasibility of implementing this complex intervention cost-effectively and in different contexts. ClinicalTrials.gov Identifier NCT03668938 (first posted date 13/09/2018) Early post-discharge rehabilitation assists patients' transition from hospital to home by improving the management of problems they encounter. In complex patients, occupational therapy initiated during hospitalization and extended to the early post-discharge phase improves social participation, independence in basic and instrumental daily activities, and performance and satisfaction when carrying out relevant occupational activities. The strong partnership between the Occupational Therapist and the patient improves compliance to treatment, enhancing the chances of success of rehabilitation interventions. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are living longer and are increasingly diverse, with health and care needs that are varied and complex. Without changes to funding, services have found it difficult to respond to needs and wishes. Method: A descriptive mixed methods design study, data were collected through questionnaire, focus groups and individual interviews from intellectual disability service managers, direct care staff and older people with intellectual disabilities and family members. Results: Continued reticence on the part of some community healthcare providers to treat people with intellectual disability was noted. Although some service innovations were noted, housing, staffing levels, staff mix and the timely provision of equipment were all reported to impact the ability of services to respond to changing needs. Current per‐capita funding practices were reported as unresponsive to growing age‐related complexity and fundamentally unsustainable. Conclusions: The health inequalities experienced by people with intellectual disabilities are compounded as they age with complex age‐related health needs. There is an urgent need for revision of the service model in Ireland and instigation of flexible and responsive approaches to funding. Accessible summary: More people with intellectual disabilities are living into old age and may experience age related ill health.In this study, we interviewed older people with intellectual disability, family members and staff and managers in intellectual disability services. We also surveyed staff from the services.We found that there is a concern that as people with intellectual disability age and have different health and social needs, the way that services are provided and staffed may no longer suit the needs of the individuals.Most intellectual disability services are now based in the community and most staff are social care rather than healthcare staff and may not have the skills and experience to provide care to older adults with healthcare needs. Accommodation in the community may not be suitable for older adults with healthcare needs.A new model of care and different model of funding intellectual disability services is needed to meet the needs of older people with intellectual disability. [ABSTRACT FROM AUTHOR]

Background: Communicating with people with severe/profound intellectual disabilities is essential for person‐centred, rights‐based support. Despite a proliferation of research around COVID‐19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID‐19 pandemic. Methods: A qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically. Findings: Six themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID‐19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID‐19 restrictions, communication remained a priority. Conclusions: Despite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well‐being of people with severe/profound intellectual disabilities was identified. This was a small‐scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning. Accessible Summaries: The restrictions during the COVID‐19 pandemic made it very hard to interact with people.This study looked at disability support workers' experience of interacting with people with severe/profound intellectual disabilities who live in residential services.The study participants talked about how important it was to be there for a person with severe/profound intellectual disability because visitors were not allowed, and they might not understand why.It is important that we use what we learned through this challenging time to provide better support in the future. [ABSTRACT FROM AUTHOR]

Background Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM. Methods Multilevel exploratory factor analysis was conducted on ASM data (n = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services. Results Multilevel exploratory factor analysis indicated that 12 of the ASM’s 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person. Conclusions The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support. [ABSTRACT FROM AUTHOR]

This paper examines the impact of COVID-19 on disabled people from the perspective of disability organisations located in the Global South. Drawing on the findings of an online survey, which received responses from 20 representatives of disability organisations located in 13 countries, this study builds on a growing body of recent research highlighting the disproportionate impact of COVID-19 on disabled people, many of whom have experienced greater levels of discrimination and deeper levels of isolation and poverty as the result of inadequate state responses to the pandemic. The study also highlights the crucial role played by many disability organisations in supporting disabled people during the crisis, often filling in the gaps in mainstream service provision, and argues that they should be enabled to play a much more prominent role in the long-term recovery process in order to ensure a more disability-inclusive post-pandemic world. This paper argues that: State responses to the pandemic have often failed to take account of the specific needs and priorities of disabled people. During the pandemic, many disabled people have been denied access to essential services, cut off from the support of their caregivers, excluded from education provision and exposed to severe economic hardship. Disability organisations have offered vital to support to their members and beneficiaries, often helping to ensure that their basic needs are met. Policymakers and service providers should collaborate closely with disability organisations in order to ensure that disabled people are not left behind in the long-term recovery process. [ABSTRACT FROM AUTHOR]

This qualitative study explored perceived barriers and facilitators to access and utilization of assistive technology (AT) among Veterans and civilians living with tetraplegia. We also explored differences in access to and utilization of AT between civilians and Veterans. Semi-structured focus groups were conducted with 32 adults (15 Veterans, 17 non-Veterans) living with tetraplegia between the ages of 18 and 65 and who were at least one-year post-injury. Focus groups were conducted at two rehabilitation sites: Craig Hospital and the Louis Stokes Cleveland VA Medical Center. Participants were asked to discuss what they perceive as (1) the facilitators and barriers of AT access and utilization, and (2) the value of AT use in everyday living. Data were analyzed using thematic analysis of verbatim transcripts. Facilitators of AT utilization and access included being connected to resources, trial-and-error, and knowledge gained from peers. Barriers to AT use included cost of devices, a general lack of awareness of resources, and requirements for eligibility; the latter two themes were endorsed solely by Veteran participants. Benefits of AT included increased independence, participation, productivity, quality of life, and safety. Findings highlight key facilitators of AT procurement and use, barriers that contribute to underutilization of AT, and important benefits experienced as a result of using AT that underscore the importance of AT for individuals with SCI. The need to maintain connections with rehabilitation resources (e.g., the Department of Vocational Rehabilitation, occupational and physical therapists, the VA, inpatient facilities) is vital to learning about and procuring AT. There is a need for a tailored approach to address AT underutilization in civilian and Veteran populations. Despite the barriers to AT use and the challenges associated with discovery of AT, utilization of AT may lead to increased independence, participation, productivity, quality of life, and safety. [ABSTRACT FROM AUTHOR]

Purpose: Aboriginal and Torres Strait Islander People with a disability continue to experience barriers to service engagement such as mistrust of government services, lack of culturally appropriate support, marginalisation and disempowerment. This meta-synthesis reviews current literature regarding these experiences to explain why services are underutilised. Methods: The meta-synthesis was conducted using a meta-ethnographic approach to synthesise existing studies into new interpretive knowledge. The approach was supported by a search using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Results: Ten original research papers utilising a qualitative methodology were extracted. Synthesis of the articles revealed four concepts that were developed into a conceptual model. These include:1) History Matters; 2) Cultural Understanding of Disability Care; 3) Limitations to Current Service Provision; and 4) Delivery of Effective Services. Conclusions: Disability services do not adequately consider the cultural needs of Aboriginal and Torres Strait Islander People or communicate in a culturally appropriate manner. There are expectations that Aboriginal and Torres Strait Islander People acknowledge their disability in alignment with western definitions of disability in order to access services. More work is needed to align disability services with culturally appropriate support to provide better health outcomes. Aboriginal and Torres Strait Islander people with a disability continue to experience barriers to service engagement which must be addressed. An essential gap that must be filled in providing disability services to Aboriginal and Torres Strait Islander people is the acknowledgment of culture as a resolute influence on all client interactions with providers. A cultural model of disability may better align with the experiences of Aboriginal and Torres Strait Islander people than current medical and social models used in healthcare. Disability services need to align better with culturally appropriate support to provide better health outcomes for Aboriginal and Torres Strait Islander people. [ABSTRACT FROM AUTHOR]

This scoping review examined the methodologies used to measure access to care in serious injury-related disability populations, for whom access to care post-discharge has significant implications for patient outcomes and rehabilitation trajectories. Four electronic databases were searched for literature published between 1 January 2000 and 15 February 2022. Relevant articles needed to relate to access to care in adult community-dwelling trauma and rehabilitation populations. The initial search identified 679 articles. Following de-duplication, the title/abstract screening was completed on 533 articles, and 56 full-text articles were reviewed. Thirty-eight articles met the eligibility criteria and were included in this review. Of the 38 studies included, there was large heterogeneity in the methodologies used to measure access to care. Two articles used multidimensional measures of access to care. There is an urgent need to establish the use of multidimensional measures as standard practice in access-to-care research. Failure to account for the multidimensional nature of access to care limits the full realisation of access for people with serious injury-related disability and prevents the implementation of processes that could improve access to health, rehabilitation, and support services and enhance the quality of care for individuals with a serious injury-related disability. A consistently comprehensive approach to rehabilitation research will provide clearer insight into users' experiences and how to optimise their engagement with services. Multidimensional measures of access to care need to be developed, validated, and used to capture the complexity of access to rehabilitation care and what is important to users. More comprehensive evidence can strengthen consensus on the gold standard of what must be included in the measurement of access to rehabilitation care, to improve service reach and relevance. [ABSTRACT FROM AUTHOR]

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions. [ABSTRACT FROM AUTHOR]

This article describes how rights, the United Nations Sustainable Development Goals (SDGs), and the quality of life (QOL) framework are closely interrelated. Although legislation can be used as a tool for the practical application of QOL principles, QOL assessment information is required to further develop legislation and monitor the fulfillment of laws, policies, and the SDGs. A validated QOL model, which provides a set of concepts that can be one useful way for understanding and assessing QOL, can also function to assess many of the rights and goals promulgated in the Convention on the Rights of Persons with Disabilities (CRPD) and in the SDGs. This article illustrates the overlap between the CRPD, SDGs and QOL using the #Rights4MeToo Scale, a new measurement instrument for people with intellectual and developmental disabilities (IDD). The instrument's value lies in its potential to: (a) raise awareness about the rights enshrined in the CRPD; (b) design, implement, and evaluate the effectiveness of interventions aimed at facilitating the exercise of those rights and the achievement of the SDGs; and (c) ultimately improve the QOL of people with IDD. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This paper presents findings from a study on blindness discourses found in South African non-profit organisations that provide rehabilitation services to visually impaired adults. The paper investigates what the public relations materials of these organisations communicate about blindness. It also considers the ideological assumptions that blindness discourses reinforce and embed in rehabilitation practice. The primary focus is a discourse analytic review conducted on a sample of organisation public facing material. The findings comprise three clusters of assumptions, with concomitant enactments in practice. These are i) third-person alliances around the blind subject and a resulting objectification of service users ii) 'journey discourse' which prohibits the expression of complex disability experiences and iii) polarised blindness fantasies which promote othering and prescribe acceptable ways of being for blind subjects. This paper questions what might be imparted to blind persons at a symbolic level through rehabilitative practices. This article explores the ways that blindness and blind persons are represented on the websites of organisations that provide visual impairment rehabilitation services in South Africa. These representations affect the way that society views visually impaired people, and the way that visually impaired people feel about themselves. Organisation websites describe visually impaired people in ways that make it seem as though they play little active role in the rehabilitation process. The idea that rehabilitation is a journey from dependence and depression to independence and self-acceptance might make it difficult for rehabilitation service users to express ongoing feelings of grief and loss. There is a need for more focus on interdependence in rehabilitation services. Rehabilitation organisations must think carefully about what their public relations materials communicate to society about blindness and blind persons. [ABSTRACT FROM AUTHOR]

To explore individuals with spinal cord injury (SCI) experiences with and perceptions towards teleSCI services during the COVID-19 global pandemic in British Columbia, Canada. Using maximum variation sampling, we invited selected individuals from a larger quantitative dataset (n = 71) to partake in an interview. In total, 12 individuals participated in the study. Interviews were recorded and transcribed verbatim. Interview transcripts were then coded and analysed by team members using qualitative descriptive analysis. Individuals with an SCI perceived teleSCI services to be convenient, accessible, affordable, and an effective way to access some healthcare services during the COVID-19 pandemic. However, in-person healthcare was still needed by many participants to effectively manage and treat their SCI-associated secondary conditions. Our findings suggest that, in a post-pandemic world, the SCI community would benefit from blended models of healthcare delivery that leverage telecommunication technologies to increase accessibility to healthcare while still providing in-person care for assessments and treatments. Individuals with an SCI perceived teleSCI services to be convenient, accessible, affordable, and an effective way to access some healthcare services during the COVID-19 pandemic. However, in-person healthcare was still needed and desired by those with an SCI to effectively manage and treat their SCI-associated secondary conditions. In a post-pandemic world, individuals with an SCI would benefit from blended models of healthcare delivery that leverage telecommunication technologies to increase accessibility to healthcare, while still providing in-person care for those requiring ongoing treatment and management of secondary conditions associated with the patient's SCI. TeleSCI services offer the potential to allow healthcare professionals and SCI specialists to collaborate (digitally) with patients at the same time. This patient-centered approach could not only help healthcare professionals strategize effective remedies to better manage secondary conditions associated with SCI but could result in overall better-quality care received by those within the SCI community. [ABSTRACT FROM AUTHOR]

This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services. [ABSTRACT FROM AUTHOR]

The article highlights the experiences of the Colorado and Oregon Care for Children with Medical Complexity Collaborative Improvement and Innovation Network (CMC COIIN) teams in using the Family Engagement in Systems Assessment Tool (FESAT) and how they engaged families as partners in their work. It details the Coordination Plus project and Family Affinity Group to help guide the work of Colorado's Special Care Clinic. It describes the transition from pediatric to adult health care in Oregon.

This study examined the direct effects of tornado exposure and protective resources on post-disaster distress among (N = 209) persons with disabilities following a tornado outbreak in the Midwest and Southeast on December 10–11, 2021 using structural equation modeling. Results found the degree of tornado exposure (e.g., injury, loss of loved ones, property damage, etc.) increased the likelihood of experiencing higher levels of PTSD and depression. Results also found that higher levels of protective resources (physical, social, and emotional) were found to protect against post-tornado PTSD and depression. Findings can inform future post-disaster mental health services for persons with disabilities. [ABSTRACT FROM AUTHOR]

This study explored social workers' experiences of working with professional language interpreters in the disability sector with the goal of developing guiding principles for practice. Despite clients from diverse backgrounds increasingly accessing disability services, interpreter-mediated social work in the disability service context is an under-researched field. Six social workers participated in semistructured interviews. Findings suggest that social work with interpreters is a field of practice comprising practical and interactional challenges, requiring a high degree of professional discretion to optimise client outcomes. Emerging from the research are potential guiding principles for practice emphasising training, adaptability, interprofessional collaboration, person-centredness, and reflexivity. Interpreter-mediated social work in the disability sector presents unique challenges as a practice context. Interpreter-mediated social work is characterised by a complex professional inter-culture, requiring social workers and interpreters to mediate professional power and role negotiation to achieve effective service delivery. Guiding principles for practice may emphasise training, adaptability, interprofessional collaboration, person-centredness, and reflexivity. [ABSTRACT FROM AUTHOR]

Objective This randomized controlled superiority trial will determine if an 18-month telehealth walking exercise self-management program produces clinically meaningful changes in walking exercise sustainability compared to attention-control education for veterans living with lower-limb amputation. Methods Seventy-eight participants with lower-limb amputation (traumatic or nontraumatic) aged 50 to 89 years will be enrolled. Two groups will complete 6 one-on-one intervention sessions, and 6 group sessions over an 18-month intervention period. The experimental arm will receive a self-management program focusing on increasing walking exercise and the control group will receive attention-control education specific to healthy aging. Daily walking step count (primary outcome) will be continuously monitored using an accelerometer over the 18-month study period. Secondary outcomes are designed to assess potential translation of the walking exercise intervention into conventional amputation care across the Veteran Affairs Amputation System of Care. These secondary outcomes include measures of intervention reach, efficacy, likelihood of clinical adoption, potential for clinical implementation, and ability of participants to maintain long-term exercise behavior. Impact The unique rehabilitation paradigm used in this study addresses the problem of chronic sedentary lifestyles following lower-limb amputation through a telehealth home-based walking exercise self-management model. The approach includes 18 months of exercise support from clinicians and peers. Trial results will provide rehabilitation knowledge necessary for implementing clinical translation of self-management interventions to sustain walking exercise for veterans living with lower-limb amputation, resulting in a healthier lifestyle. [ABSTRACT FROM AUTHOR]

Individuals with disabilities experience numerous health disparities compared to their non-disabled peers and face inequities associated with challenges accessing care, stigma, and bias. Health professionals have the opportunity to address health inequities through improved communication, a primary barrier to receiving quality care; however more training is needed. There are limitations to existing tools to measure the skills or self-efficacy of professionals to communicate with individuals with disabilities, and to assess the effectiveness of training programs. The purpose of this study was to develop and validate an instrument to measure health professionals' communication skills and self-efficacy specifically related to working with individuals with disabilities. After a comprehensive review of literature, expert review of proposed scale items, and pilot test, a 19-item survey was administered to 237 healthcare and health and physical education professionals. Construct validity was evaluated by performing an exploratory factor analysis on each subscale and Cronbach's alpha coefficient was used to measure internal consistency. For the skills subscale, Cronbach's α =.919 and for the self-efficacy subscale Cronbach's α =.949 after the removal of one item, resulting in a final 18-item inventory that demonstrates strong validity and reliability. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aims: The provision of Home Enteral Nutrition (HEN) is a well‐established support for patients, however, significant inconsistencies in funding result in financial burden for some healthcare services across Australia. Recent government‐initiated funding changes prompted the development of a new HEN service for eligible patients with a disability, moving from a universal to more individualised approach to care. Methods: This retrospective observational study included patients enrolled on a newly established disability‐specific HEN service at a paediatric tertiary hospital between July 2020 and February 2022 inclusive. Components of service development were explored including service model, clinical resources, information related to patient enrolments and costings for annual HEN requirements provided by dietitians. Retrospective quantitative data was collected from the Electronic Medical Record system and analysed using descriptive statistics. Results: A total of 362 patient enrolments occurred over a 21‐month period, with an average of 17 new patients having accessed the service each month. Annual HEN supports were quoted at a median cost of $13487.94 AUD (2364.97–44170.92), mostly attributable to consumable requirements. Most eligible participants chose to receive care through the new HEN service. Supports were quoted >330% higher than previous fixed price allocations, highlighting the true cost associated with HEN care. Large variation in costings may be attributed to the diversity and complexity of patients. Conclusion: Funding changes presented a unique opportunity to meet pre‐existing resource deficits and enabled individualised access to HEN supports for paediatric patients with a disability. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability have a high risk of falls and falls‐related injuries. Although people with intellectual disability are at increased risk of falls, there is a need to better understand the efficacy of interventions that can help reduce falls and address risk factors in this population. This systematic review aimed to evaluate the type, nature and effectiveness of interventions undertaken to reduce falls with community‐dwelling adults with intellectual disability and the quality of this evidence. Method: Four electronic databases were searched: Ovid MEDLINE, PsycINFO, CINAHL Plus and the Cochrane Library. Studies were included if they involved people aged 18 years or over, at least 50% of study participants had intellectual disability, participants were community‐dwelling, and the study evaluated any interventions aiming to reduce falls. Study quality was assessed using the National Institutes of Health study quality assessment tools. Reporting of the review followed Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines. Results: Seven studies were eligible for review, with a total of 286 participants and mean age of 50.4 years. As only one randomised trial was identified, a narrative synthesis of results was undertaken. Five studies evaluated exercise interventions, one evaluated a falls clinic programme, and one evaluated stretch fabric splinting garments. Methodological quality varied (two studies rated as good, four as fair, and one as poor). Exercise interventions varied in terms of exercise type and dosage, frequency and intensity, and most did not align with recommendations for successful falls prevention exercise interventions reported for older people. While the majority of studies reported reduced falls, they differed in methods of reporting falls, and most did not utilise statistical analyses to evaluate outcomes. Conclusion: This review identified a small number of falls prevention intervention studies for people with intellectual disability. Although several studies reported improvements in fall outcomes, ability to draw conclusions about intervention effectiveness is limited by small sample sizes and few studies. Further large‐scale research is required to implement and evaluate falls prevention interventions specifically for adults with intellectual disability. [ABSTRACT FROM AUTHOR]

Background: The Australian geographically rural and remote disability workforce has historically demonstrated difficulties to keep up with the demand for quality services and supports for people with disability. In 2013, the National Disability Insurance Scheme (NDIS) was launched to provide individualised disability support packages to meet people's needs. To receive funding, people with disability are required to develop a NDIS plan. That plan is then funded by the National Disability Insurance Agency (NDIA), the government agency responsible for managing the NDIS. Although the NDIS has been operating for almost 10 years, there is limited research into the planning experiences of the workforce in regional, rural and remote regions of Australia. This review aims to ascertain the level of scholarly investigation into workers' experiences of NDIS planning. Methodology: Research publication databases were searched using a specific search string to identify publications that included reference to the workforce's experiences of the NDIS planning process in regional, rural and remote regions of Australia. The Mixed Methods Appraisal Tool (MMAT) was adopted to appraise the quality of the research publications. Research publications that focused on those working with Aboriginal and Torres Strait Islander people were also appraised using the Aboriginal and Torres Strait Islander Quality Appraisal Tool developed by the Centre for Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. A thematic synthesis of the publications was undertaken to ascertain disability and health workforce experiences of the NDIS planning process. Results: Seven papers met the selection criteria. Two papers were policy reviews and reported the improvements of the NDIS planning process since its inception. These studies reported four reoccurring themes: (1) cultural/socioeconomic and geographical factors; (2) administrative burden and bureaucracy; (3) values, culture and geography; and (4) burden on allied health workers. Conclusion: The NDIS planning process has developed and progressed since its rollout in 2013. There are limited research papers available that describe the workforce's experience of the planning process in regional, rural and remote regions. More research in this area is needed to identify the experiences of the disability workforce in relation to the NDIS planning process. [ABSTRACT FROM AUTHOR]

Municipalities and nonprofit organizations play a major role in administrating services that support individuals with disabilities. The purpose of this study was to explore how these organizations responded to the COVID-19 pandemic in regards to service delivery and programming for people with disabilities. This qualitative interpretative description study used semi-structured individual interviews for data collection. Recordings of the interviews were transcribed. Then the transcripts were analyzed qualitatively for themes following an inductive approach. Twenty-six individuals working for nonprofit organization or municipalities participated in the study. Six themes were identified: doing more with less; adapting rather than creating new services; ongoing consultation with stakeholders; feeling successful at adapting the services; being innovative with fundraising and embracing radical change. Flexibility and iterative user-centered approach appeared to be common coping strategies. Remote services were privileged to adapt service delivery during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Several countries have enacted personal assistance (PA) legislation over the past few decades. Although this policy has been associated with improvements in the quality of life, here we explore how it interacts with the social environment. We examine how the existence of PA legislation influences the effect of social equality on the health and well-being of disabled people. Multilevel analysis was performed using data from the European Social Survey (n = 18,924), including 31 countries and 7 waves of data (2002–2014). Results show that social equality has a positive effect on well-being, but only in countries with PA. The relationship between social equality and well-being, in countries with PA, is explained by increased public participation, satisfaction with the political and economic situation, and a more positive opinion about the health services. Our findings highlight the importance of PA in influencing disability equality and improving disabled people's well-being. The ways in which social equality affects the health and well-being of disabled people is underexplored. We analyze how personal assistance shapes the link between social equality and well-being. The well-being of disabled people improves when there is more social equality, but this only observed in countries with legislation on personal assistance. Social equality is associated with public participation, satisfaction with the political and economic situation in one's country, and a more positive opinion about the health services, which in turn are all linked with greater well-being. This study offers additional information on how social aspects influence the well-being of disabled people, highlighting the importance of personal assistance for disability equality. [ABSTRACT FROM AUTHOR]

BACKGROUND: Self-employment continues to be an elusive competitive integrated employment outcome (CIE) for people with disabilities receiving services from State Vocational Rehabilitation Agencies (SVRA). This article provides a snapshot of the extent to which self-employment is occurring within the SVRA program as a CIE outcome. Recommendations are included for VR policies and practices that may expand the self-employment participation and outcomes for an inclusive range of VR recipients. OBJECTIVE: The purpose of this study is to provide an analysis of the national outcomes in self-employment for individuals served by the SVRAs for program years 2018, 2019, and 2020. METHODS: The data in this article was provided by the Rehabilitation Services Administration (RSA) as part of the RSA Case Service Report (RSA-911) for 2018, 2019, and 2020. RESULTS: Self-employment continues to be an underutilized VR service. Outcomes in self-employment as a percentage of all VR outcomes in CIE remained low and stagnant during 2018 and 2019 with a noticeable drop in outcomes for PY 2020. Consistently, self-employment outcomes are predominantly achieved in the VR system by a homogenous population of older (age 50+) participants whose race is white and gender is male. CONCLUSION: Unless the field of vocational rehabilitation proactively commits to diversifying and expanding self-employment participation and outcomes, the odds are that the outcomes for self-employment will remain unchanged. [ABSTRACT FROM AUTHOR]

Introduction: In 24/7 disability care facilities, patient‐reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. Methods: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick‐offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. Results: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID‐19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. Conclusion: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility‐specific learning goals. Stakeholder engagement and co‐created strategies may have strengthened the adoption of and experiences with the implementation. Patient or Public Contribution: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact. [ABSTRACT FROM AUTHOR]

The article concerns the Swedish support system's legal discourse, and investigates the rationale for excluding people over the age of 65 from services that younger people with disabilities may obtain. Data consist of government texts and court decisions under the Severe Disability Act about services for people over the age of 65. It was found that little in the legal discourse concerns the needs and rights of older people, and the general belief is that the Severe Disability Act is primarily intended for children, young people, and adults of working age. Othering of older people was indirectly present in three assumptions about differences in categorizations (people with disabilities vs older people with support needs), needs (active age vs not active age), and comparisons (with people without disabilities of the same age vs with others receiving eldercare). In Sweden, as in many other countries, the support system excludes older people with disabilities from some services, using a division between the categories 'people with disabilities' and 'older people'. The legislation that governs the support system communicates the message that older people with disabilities have different needs as compared to non-old people with disabilities. Justice for non-old people with disabilities is to have similar living conditions as people without disabilities of a similar age, and justice for older people with disabilities is to have similar living conditions as others who receive eldercare. The support system of Sweden rests on the assumption that disability after retirement age is caused by the process of ageing. People who grow old with experience of being part of disability movements may establish new identities as older people with disabilities, and challenge the present order. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to analyse and critically reflect on access to Assistive Technology (AT) for persons with disabilities (PWD) in Nepal, India and Bangladesh. This analysis aims to guide the development of a contextualised generic AT service delivery model suitable for these countries, based on the best practices identified. This paper is based on a comprehensive study conducted in Nepal, India and Bangladesh, observing mobility and hearing-related AT service delivery centres run by the government, as well as private and nongovernmental organisations, and interviews with key informants: policymakers (5), AT service providers (20) and AT service users (20) between December 2019 to February 2020. A descriptive, qualitative exploratory study design was followed. A quality assessment framework was used to structure the analysis and interpret the findings. AT service provisions are poorly developed in all three countries. On all quality indicators assessed, the systems show major weaknesses. AT users have very limited awareness about their rights to these services and the availability of AT services, the range of services available is very limited, and eligibility is dependent on medical criteria related to visible and severe disabilities. Lack of accessibility, eligibility, reachability and affordability are the main barriers to access AT services for PWD in Nepal, India and Bangladesh. Increased community level awareness, increased Government funding and a community based, medically informed flexible social model of AT services is a way forward to ensure access to AT services for PWD in these countries. Increased community awareness is necessary to increase access to Assistive Technology Services for Persons with Disabilities. Increased and flexible funding from the Government and philanthropists will improve rehabilitation. Establishment of community based Assistive Technology Services centres will increase access and improve rehabilitation. [ABSTRACT FROM AUTHOR]

Introduction: Care integration needs to take place on different levels, including that of infrastructure and especially data infrastructure. Only integrated data allow for policy making, care planning, research, and evaluation that spans across different sectors of care and support. Methods: In the course of an EU-funded reform initiative on integrated care, the Estonian government and various agencies have developed a concept for an integrated data centre, bringing together information from social, medical, and vocational support services. The concept was developed in co-production with many stakeholders. A test data set from all covered sectors, including the pseudonymised data of 17,945 citizens of an Estonian municipality, was created and analysed as a proof-of-concept exercise. Results: The co-production approach resulted in a set of requirements and use cases as well as a specification of premises, processes, and data flows for the data centre. The analysis of the test dataset showed the principal feasibility of the dataset for the intended purposes. Conclusion: The concept development phase showed that an integrated data centre for Estonia is feasible per se and helped to specify concrete actions required for its realisation. Strategic and financial decisions from the Estonian Reform Steering Committee are now needed to create the data centre. [ABSTRACT FROM AUTHOR]

This paper describes the development and preliminary evaluation of a novel participant‐led video (PLV) intervention to support people with disability (PWD) and cognitive and communication impairments to communicate their needs and preferences to their disability support workers. The PLV intervention was designed following a scoping literature review and workshop with PWD and close others. Subsequently, it was piloted with five primary participants with acquired brain injury and cognitive and communication impairments, five close other supporters and five facilitators. An independent mixed methods evaluation of the pilot was conducted with participants, close others and facilitators. All pilot evaluation participants reported high levels of satisfaction with the PLV intervention (mean ratings: primary participants 4.5/5.0; supporters 5.0/5.0; facilitators 4.8/5.0). When primary participants and their supporters were asked to rate how likely they were to recommend the PLV intervention, responses were extremely positive with the mean rating exceeding eight on a 10‐point scale. Qualitative analysis of interview data revealed the PLV to be a person‐centred experience for primary participants that was structured around sense of self and included having a voice and taking control in directing their lives, personal growth through participation and feeling validated through the experience. The production and use of PLV training resources has much potential to improve the delivery of support and maximise support outcomes by enabling people with cognitive and communication impairments to have choice and control, set their own goals and direct their supports. Further research is required with a larger sample size and longitudinal evaluation of participant outcomes. [ABSTRACT FROM AUTHOR]

Purpose: Approximately 10% of the U.S. adult population has a speech, language, and/or voice disability, collectively referred to as communication disabilities. An increasing number of studies demonstrate that persons with communication disabilities have worse health and health care outcomes as compared to those without communication disabilities. Understanding the state of the science, including potential contributing factors is critical to begin to address the disparities. Method: Applying a historical lens and integrating multiple models of disability provide a comprehensive perspective of the health and health care outcomes of persons with communication disabilities. Results: Three phases for addressing health care disparities exist: detecting, understanding, and reducing. Results from a 2012 National Health Interview Survey provide compelling population-level results of the health and health care disparities experienced by persons with communication disabilities. To understand the disparities, factors within the health care system, such as availability of communication aids and services, as well as provider and staff biases, assumptions, and lack of knowledge need to be considered. To date, few interventions exist to address disparities in care for persons with communication disabilities. Consequently, researchers need to engage with stakeholders in innovative study designs and methods to facilitate the rapid development, implementation, and dissemination of interventions that address the disparities. Conclusion: To ensure equity for the large and growing population of persons with communication disabilities, researchers, policy makers, patients, and health care systems need to collaborate in identifying and addressing the factors contributing to health and health care disparities. [ABSTRACT FROM AUTHOR]

This paper represents the third in a three‐part series intended to challenge the social validity of the services provided by a university‐based practicum for addressing the challenging behavior of individuals with disabilities. In this paper, we surveyed referring stakeholders (e.g., parents, teachers) of past service recipients to explore the acceptability of the service model's goals, methods, and outcomes. We probed for tensions resultant from the model's threefold mission (service, training, and research) and explored how conflicts between these goals affected the quality of our services. Generally, results were favorable and appeared to support continued model implementation, but not without qualification. Emergent themes, areas for improvement, and future directions for intervention research are all discussed. [ABSTRACT FROM AUTHOR]

The article discusses a study which examined the impact of the COVID-19 pandemic on adults' access to medical care services by presence and type of disability which showed that adults with disabilities experienced significant disparities in delayed and unmet need for medical care. Topics covered include the factors contributing to inequities in delaying medical care and unmet needs, the limitations of the study and the implications for policy and practice.

An editorial is presented on the impact of the COVID-19 pandemic on people with disabilities and implications for health services research. Topics include strengthen health systems being inclusive and responsive to the needs of people with disabilities including during crises; and health services for people with disabilities having significant negative impacts on functioning and wellbeing.

This paper represents the third in a three‐part series intended to challenge the social validity of the services provided by a university‐based practicum for addressing the challenging behavior of individuals with disabilities. In this paper, we surveyed referring stakeholders (e.g., parents, teachers) of past service recipients to explore the acceptability of the service model's goals, methods, and outcomes. We probed for tensions resultant from the model's threefold mission (service, training, and research) and explored how conflicts between these goals affected the quality of our services. Generally, results were favorable and appeared to support continued model implementation, but not without qualification. Emergent themes, areas for improvement, and future directions for intervention research are all discussed. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this review article is to examine interacting factors that affect the psychotherapeutic process for patients who use augmentative and alternative communication (AAC). This is examined from two perspectives: (a) how the skills and needs brought by the individual with communication disabilities influence the process of therapy and (b) how the individual's ecological systems may affect an individual's mental health and their access to mental health supports. Understanding these factors will guide future efforts aimed at ensuring that individuals with communication disorders have adequate access to services and supports for mental health.*** Method: A narrative synthesis approach was used to explore the interaction of psychotherapy and the use of AAC. Existing research in the fields of psychotherapy and speech-language pathology was examined for its relevance to issues of communication using AAC. Specifically, information was synthesized concerning mental health, prevalence rates of mental health diagnoses, the provision of traditional psychotherapy, and communicating via AAC in order to describe the intersection of psychotherapy and AAC. This narrative synthesis approach sought to initiate discussion of relevant factors that may affect the psychotherapeutic process for patients who use AAC.*** Results: A variety of factors may affect the psychotherapeutic process for patients who use AAC. Bronfenbrenner's (1977) Ecological Systems Theory was used to explore access to mental health services for individuals who use AAC at the levels of microsystem, mesosystem, exosystem, and macrosystem. Such factors include alterations to communication between patient and psychotherapist, skills brought by the patient, involvement of a communication assistant and/or speech-language pathologist, education and skill level of the psychotherapist, appropriateness of billing codes, and system and policy factors that may affect the provision of mental health services to patients who use AAC.*** Conclusion: It is necessary to explore the factors that affect the provision of psychotherapy for patients who use AAC in order to more fully address the mental health needs of individuals with communication disorders. Further research is needed to determine the impacts of these factors and ways to address those impacts. [ABSTRACT FROM AUTHOR]

Introduction: Women with physical disabilities experience barriers to accessing patient-centered and accommodative care during the prenatal and childbirth periods. While there is a growing body of work in high-income countries to address these needs, there is little research detailing specific challenges in low- and middle-income countries (LMICs) where a woman’s’ burden— and need—is greatest. Methods: We conducted an integrative review to synthesize the experiences of women with physical disabilities accessing prenatal care and childbirth services in LMICs. Five databases were searched for systematic reviews, retrospective cohort studies, crosssectional studies, narrative literature reviews, as well as other evidence types. We used Ediom’s EvidenceEngine™, a machine-assisted search engine that uses artificial intelligence to conduct this search using pertinent keywords to identify original research published between January 2009 - September 2018. These results were augmented by hand searching of reference lists. Forty articles were identified using this method and 11 retained after duplicates were removed and inclusion and exclusion criteria applied. Results: Four types of experiences are described in these 11 studies: (1) limited physical and material resources; (2) health care worker knowledge, attitudes, and skills; (3) pregnant people’s knowledge; and (4) public stigma and ignorance. Discussion: People with physical disabilities face specific challenges during pregnancy and childbirth. Importantly, these findings offer targets for enhanced clinical training for nurses, midwives, traditional birth attendants and public health workers, as well as opportunities for the improved delivery of prenatal care and childbirth services to these vulnerable women. [ABSTRACT FROM AUTHOR]

The aim of this study is to strengthen the urban rights and quality of life of vulnerable groups by contributing to the development of a new approach and standards in urban social services. Toward this goal, we present the socially innovative service model (SISM) which ensures a framework of daytime care and support centers for disabled individuals established in the Eyüp district, wherein generally the lower and lower-middle classes of Istanbul reside. SISM provides an important perspective on rights-based social policies as well as community and city interaction, thereby enabling interdisciplinary study of social sciences and planning. [ABSTRACT FROM AUTHOR]

Background d/Deaf people suffer from inequitable access to healthcare and health information. This results in worse health literacy and poorer mental and physical health compared to hearing populations. Various interventions aimed at improving health equity for d/Deaf people have been documented but not systematically analyzed. The purpose of this systematic review is to obtain a global overview of what we know about interventions aimed at improving health equity for d/Deaf people. Methods Medline Ovid SP, Embase, CINAHL EBSCO, PsycINFO Ovid SP, Central—Cochrane Library Wiley and Web of Science were searched for relevant studies on access to healthcare and health-related interventions for d/Deaf people following the PRISMA-equity guidelines. We focused on interventions aimed at achieving equitable care and equitable access to health information for d/Deaf people. Results Forty-six studies were identified and analyzed. Seven categories of interventions facing healthcare or health education inequities emerged: use of Sign Language (1), translation, validation and identification of clinical tools and scales (2), healthcare provider training program (3), development of adapted healthcare facilities (4), online interventions (5), education programs (6) and videos (7). Despite some methodological limitations or lack of data, these interventions seem relevant to improve equity of care and health education for d/Deaf people. Conclusion Interventions that promote healthcare equity, health education amongst d/Deaf patients and healthcare provider awareness of communication barriers and cultural sensitivity show promise in achieving more equitable care for d/Deaf patients. Meaningful engagement of d/Deaf individuals in the conceptualization, implementation and evaluation of health-related interventions is imperative. [ABSTRACT FROM AUTHOR]

Objective: There are more than 6,000 known rare diseases (RDs), which are often serious, chronic, and progressive conditions. Cumulatively, having a RD is actually common, impacting an estimated 300 million people worldwide. While the stigmatization of some specific RDs has been studied, examining stigma in a large sample of many RDs allows for a broader understanding of patterns. Design: We used inductive qualitative content analysis to analyze survey responses to an open-ended question about challenges of living with a RD among 384 people with 178 distinct RDs. Results: We identified eight codes which were organized under the following three themes: structurally enacted, interpersonally enacted, and felt stigma. People with RDs experience structurally enacted stigma in the forms of healthcare stigma, education/workplace stigma, and an overall lack of accessibility. They also face interpersonally enacted stigma, including insufficient social support, a lack of understanding from others, and capitalist norms of productivity and self-sufficiency. Additionally, they experience felt stigma related to shame and the pressure to pass as able-bodied. Conclusion: Possible solutions to RD stigma include increased education about RDs for healthcare professionals, a societal shift towards prioritizing accessibility, strengthened legal protections for disabled people, and expanded disability justice-focused community organizing. [ABSTRACT FROM AUTHOR]

Care systems worldwide regularly undergo reforms and adjustments in the hope of system improvements. In many ways this can align with calls for governments to be more 'adaptive' and 'agile' to changing care demands. However, such continued adaptations can create turbulence for the care sectors in question. In this article, we examine the large‐scale reform of the Australia National Disability Insurance Scheme and the impact of a series of adaptations on the disability care sector in Australia. We find that the disability sector in Australia is experiencing turbulence and a lack of clarity about the rules regarding the programme, resulting in increased administrative burden and financial pressures. Such turbulence has flow‐on effects on the level of care that is able to be accessed by people with disability in Australia. [ABSTRACT FROM AUTHOR]

Theoretically, individualised funding schemes empower people with disability (PWD) to choose high quality support services in line with their needs and preferences. Given the importance of support, the aim of this scoping review was to understand the factors that influence the quality of paid disability support for adults with acquired neurological disability. A comprehensive scoping review of the published literature from 2009–2019 was conducted on five databases: Medline, CINAHL, Embase, PsycINFO and Scopus. Of the 3391 records retrieved, 16 qualitative articles were eligible for review. Thematic synthesis of the findings revealed six key interrelated themes: (1) choice and control, (2) individualised support, (3) disability support worker (DSW) qualities, (4) DSW competence, (5) PWD – DSW relationship, and (6) accessing consistent support. The themes depict factors influencing the quality of paid disability support from the perspective of PWD, close others and DSWs. Although the evidence base is sparse, the factors identified were in line with international rights legislation and policy ideals. The findings can provide insights to PWD hiring and managing support, and facilitate the delivery of quality disability support. Further research is required to understand the interactions between the factors and how to optimise support in practice. The quality of paid disability support is determined by a multitude of interrelated factors influenced by the disability support worker's qualities and competencies, the interaction between the person with disability and the disability support worker, as well as external contextual factors. Optimising choice and control for adults with acquired neurological disability and providing individualised support should be a significant focus for disability support workers. Training modules for disability support workers can be informed by five of the identified themes: (1) choice and control, (2) individualised support, (3) DSW qualities, (4) DSW competence and (5) the relationship between PWD and DSWs. [ABSTRACT FROM AUTHOR]

Although previous research has shown that the transition to adulthood may be challenging, there exists a lack of research regarding perspectives of stakeholders on the transition of individuals with Autism Spectrum Disorder (ASD). This study aimed to investigate stakeholders' experiences regarding healthcare services for youth with ASD during their transition. We involved 20 stakeholders, including 17 parents of youth with ASD as well as 3 services providers. The study yielded three major themes including: (a) accessibility and quality of care; (b) tensions and conflicts; and (c) navigation and integrated care. The findings can be used to direct change within the healthcare services towards better practices for youth with ASD and increasing the likelihood of positive health outcomes. [ABSTRACT FROM AUTHOR]

Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system. More than 12 million, or almost 86%, of CYSHCN ages 1-17 years do not have access to a well-functioning system of services. Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation's approach to delivering health care. To advance the system and prioritize well-being and optimal health for CYSHCN, the Health Resources and Services Administration's Maternal and Child Health Bureau, with input from diverse stakeholders, developed a set of core principles and actionable strategies for the field. This article presents principles and strategies in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), which acknowledges the comprehensive needs of CYSHCN, a changing health care system, and the disparities experienced by many CYSHCN. Four critical areas drive the Blueprint for Change: health equity, family and child well-being and quality of life, access to services, and financing of services. Although discussed separately, these critical areas are inherently interconnected and intend to move the field forward at the community, state, and federal levels. Addressing these critical areas requires a concerted, holistic, and integrated approach that will help us achieve the goal that CYSHCN enjoy a full life from childhood through adulthood and thrive in a system that supports their families and their social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities. [ABSTRACT FROM AUTHOR]

Despite significant efforts to end it, violence, abuse and neglect continue to contribute to preventable harms and deaths among people using disability services. To explore why these harms persist and what is needed to prevent them, we examine the safety-related attitudes and practices among frontline staff delivering services in the context of an individualized funding scheme, Australia's National Disability Insurance Scheme (NDIS). Analysis of survey data (n=2341) showed almost half of frontline disability workers were aware of harms affecting clients in the past year, and three in five felt their employers' safety and incident reporting protocols were inadequate. Workers' accounts of barriers to performing their safeguarding roles underline how government's meta-regulatory approach is enabling provider organizations to prioritise financial concerns and tolerate high safety risks. We argue that advancing the rights of people with disability to be safe from harm whilst engaged in social services requires changes in their external regulatory environments and in structures of power between workers and managers, so that policy, funding and regulatory settings enable appropriate local safety practices to flourish. [ABSTRACT FROM AUTHOR]