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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: 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]

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 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]

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]

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]

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]

• The problem of voluntarily abandonment free health services among children with disabilities is caused by asymmetry between the ideology of egalitarianism and developmentalism. • Disability policy implementation from developmentalism produces the result of voluntarily abandonment through the governance methods and parents' attitudes approach. • The Governance methods produce invisible institutional exclusion in the form of non-client-centered tasks, constraints surrounding service costs, competitive welfare development models, and "good" performance chasing. • Parents treat children with disabilities as abnormal, unprofitable, burdensome, and tragic, which encourages the voluntarily abandonment of healthcare services. • The results of this study call for critical reflections to protect health and rehabilitation rights for children with disabilities. In terms of protecting children with disabilities, healthcare rights are a crucial issue that cannot be ignored. In China, although the government provides generous health services, children with disabilities abandoning those services is a common phenomenon. Few scholars have directly and systematically studied this important issue. Using a qualitative method, we investigated the experiences and feelings of six service providers and twelve primary caregivers. From an ideological conflict perspective, we have found that China is a social context in which the state-led ideology of egalitarianism and the ideology of developmentalism co-exist but clash at the level of local governments and organizations. We produced two themes: (a) Governance methods arising from developmentalism produce invisible institutional exclusion in the form of non-client-centered tasks, constraints surrounding service costs, competitive welfare development models, and "good" performance chasing; (b) parents operating under developmentalism treat children with disabilities as abnormal, unprofitable, burdensome, and tragic, which encourages the voluntarily abandonment of healthcare services. The interaction of these two themes strengthens the ideological split occurring between them, leading to the widespread deprivation of health rights among children with disabilities. The results of this study call for critical reflections on disability policy implementation under this current conflicting ideology. [ABSTRACT FROM AUTHOR]