Disability Services Research Articles

The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers,and five healthcare professionals. The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. Through an iterative, flexible, inclusive,and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staffand health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations,and policymakers.

Improving how we work with carers in multidisciplinary teams in LD services: Our reflections

This article is a reflective piece on the experience of developing how our multidisciplinary team (MDT) works with carers in our Specialist Learning Disability Service (SLDS). We aimed to create a broader understanding and incorporate carers’ perspectives by using principles from systemic practice. As clinicians we have often heard carers reporting that their involvement in care is not adequately recognised and their expert knowledge of the person they care for is not taken into account. The work to date is part of a broader project beyond the scope of this article, designed to shape the ways in which we work with families and wider support networks. Through this article we hope to share details of what we have done as project leads, along with some of the reflections (presented in italics) on our experiences of implementing this project.

Exploring the Involvement of Autistic Youth in Decision Making About Services.

Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged youth with autism to explore their involvement in decisions about services. Most youth reported not being involved in decision making about the types and modalities of disability services. When youth were involved in decisions, the services were often related to education. Although youth reported that their parents typically spearheaded decisions about services, youth also reported that their parents often listened to their input. Implications for research, policy, and practice are discussed.

STRATEGI OPTIMALISASI LAYANAN DIFABEL PADA DINAS PERPUSTAKAAN DAN KEARSIPAN KOTA YOGYAKARTA

Disability services are an obligation mandated by Indonesian Constitution to ensure equal access to public services for all citizens without exception, including for citizens who have physical, mental, intellectual and sensory limitations (disabled). However, in practice, the provision of disability-friendly public services is still not optimal, in terms of utilization and provision of existing facilities. It is this urgency that directs research towards the aim of knowing the factors that cause less optimal services for people with disabilities to formulate effective strategies in order to optimize services. This research belongs to the type of qualitative research with descriptive analysis. The analytical tool used to formulate effective strategies is SOAR analysis. SOAR Analysis is a development of SWOT Analysis which focuses on leveraging organizational strengths and opportunities to realize aspirations and results that are explored together to present more optimistic strategies, rather than focusing on weaknesses and threats. It is very much suitable for the organizational form of government agencies; those prioritize public trust. The results of the study show that factors causing the non-optimal disability services in Office of Yogyakarta City Library and Archives are facilities and infrastructures, human resources (HR), and policies. The strategy for optimizing DPK Yogyakarta City disability services consists SA Strategy (operating disabled service attendants), SR Strategy (development of voice book search feature and voice archive search feature), OA Strategy (installation of induction loop system in service areas, providing wheelchairs, educational film collections with sign language, adding PCs, media transfer tools, talking books, and also replacing damaged mobile fleets to re-function mobile library for Special Needs Schools), and OR Strategy (organizing Applied Literacy activities involving disabled and launching archival search services and special archive restoration services for disabled in near future).

An Ethnographic Study Concerning the Implementation of Education on Ageing for Older Adults with Mild Intellectual Disability: The Perspective of the Educators.

Despite the fact that longevity in people with intellectual disability has increased at least as much as in the general population, there is a dearth of interventions related to ageing for these older people. Therefore, this study investigated educators' implementation strategies in a new tailor-designed educational intervention with the goal of supporting the process of ageing for people with mild intellectual disability. An ethnographic research design was employed, including participant observations, field notes, and 15 ad hoc interviews with educators, spread over two years in four towns. The strategies used for facilitating learning about ageing were expressed in the two themes promoting social togetherness through everyone's participation and learning together and from each other through recognition and consolidation. These strategies were applied to create a learning environment characterised by a good atmosphere and respectful interaction. Learning together involved consolidation through repetition, group discussions, the use of visual learning materials, and study visits. This new educational intervention about ageing is promising, but less resource-intensive interventions should also be developed and preferably integrated into the disability service. Before concluding whether this education supports the ageing process, it needs to be evaluated from the perspective of people with intellectual disability.

The Urgency of Disability Service Units in Higher Education as an Effort to Realize Inclusive Access to Higher Education

This research is based on the gap between theory, regulation and implementation of the fulfillment of rights for students with disabilities in higher education based on Law No. 8 of 2016. One of the important issues of rights fulfillment in the Law is the right to education in higher education. Explicitly, the law mentions several obligations of universities, public and private, to play an active role in fulfilling and promoting the rights of persons with disabilities. In this literature study, we aim to study in depth the implementation of each policy and advocacy for the rights of students with disabilities carried out by several universities in Indonesia with the formation of disability service units that have a role in pursuing good practices to realize inclusive universities. Based on the results of the research, the disability service unit is one of the efforts to realize inclusive universities and become a forum for fulfilling the rights of students with disabilities to obtain the right to education, which includes the rights of persons with disabilities, fulfillment of equal opportunities for persons with disabilities, respect, protection and fulfillment of the rights of persons with disabilities, including the provision of accessibility and proper accommodation.

Policies and procedures

An overview of the key topics faced by disability services providers with citations to noteworthy cases, statutes, regulations, and additional sources.

Fortune 500 companies and employment of people with disabilities: The intermediary role of disability inclusion policies and practices

BACKGROUND: Employing qualified individuals with disabilities can improve organizational competitiveness and promote diversity, equity, and inclusion (DEI) policies. However, research on disability inclusion policy and practices among employers committed to hiring people with disabilities is limited. OBJECTIVE: This study aimed to investigate efforts of Fortune 500 companies to include disability in their DEI policy and examine the effect of disability inclusion policy and practices on employment of people with disabilities METHODS: Four hundred sixty-six human resource and project managers with hiring authority participated in the present study. The Disability Inclusion Profiler-23 (DIP-23) was used to assess the perceived importance and implementation level of disability inclusion policy and practices in Fortune 500 and non-Fortune 500 companies. Two-sample independent t-tests were used to compare disability-employment rates and disability inclusion scores between Fortune 500 and non-Fortune 500 groups. Parallel mediation analysis was conducted to examine the extent to which executive level and mid-manager level DIP scores mediated the relationship between Fortune 500 companies and disability employment rates. RESULTS: Fortune 500 companies demonstrated higher disability employment rates and better disability inclusion policies and practices compared to non-Fortune 500 companies. CONCLUSION: State vocational rehabilitation agencies and other disability service providers should engage Fortune 500 executives to bolster disability inclusion efforts. Collaboration between vocational rehabilitation professionals and mid-level managers can enhance DIP policy implementation, thereby improving employment opportunities for people with disabilities.

Building Community Capital—The Role of Local Area Coordinators in Disability Services: A Critical Review

Local Area Coordination (LAC) roles have been implemented in disability services in many countries, supporting people living with disability to connect with formal and informal support in the community. Embedded in the National Disability Insurance Scheme in Australia, the aspiration is that this LAC role will connect people with disability to supports and enable the generation of greater community capacity and inclusion. Yet, with only a limited evidence base that demonstrates the impact of this approach, a clear measurement framework is needed to provide evidence of the realization of this aspiration. We propose that this impact could be demonstrated by applying a Community Capitals Framework (CCF) as the theoretical base for the LAC role and other community capacity initiatives, such as service navigation within disability reform of disability services. The CCF is premised on seven ‘capitals’—social, natural, cultural, human, political, financial and built that intersect and interact with each other to create positive spirals of change in communities. In this critical literature review, we apply the CCF to map and synthesize existing research on the LAC’s role in building community capital and examine the utility of the CCF as a map for LAC and service navigation practices to enhance community inclusion. For this review, we analyzed peer-reviewed journal papers and grey literature that focused on LAC community capacity building for people with disability in a disability service context published between 2000 and August 2023. Of the 17 publications that met the inclusion criteria, there was no published evidence that comprehensively examined or measured community capacity building consistent with the tenets of the CCF. However, our analysis showed that all capitals, with the exception of natural capital, had been considered, with some indication that investment in these capitals (particularly social capital) could be connected in the positive spiraling way suggested by the CCF. Given the paucity of existing evidence to inform the LAC aspiration for community capacity building, research informed by consumer priorities is needed to inform LAC and service navigation practices to address community needs. The CCF has the potential to develop our understanding of LAC and other community capacity-building initiatives through the measurement of LAC and service navigation services and consumer outcomes, as well as by informing investment to target growth capitals in communities.

The Disability Royal Commission on National Disability Insurance Scheme (NDIS) workforce issues: avoiding the root causes?

Workforce issues are central to the changes necessary to create safer and higher-quality services for people with intellectual disabilities. This article examines the Disability Royal Commission’s (the Commission) workforce recommendations relating to the disability services sector, which has been beset by chronic workforce problems since the introduction of the National Disability Insurance Scheme (NDIS). We describe the rich evidence in the Commission’s Final Report and its analysis of key issues such as work value, disability worker qualifications, training, and worker registration. Many of these issues are especially relevant to people with intellectual disabilities, who need sophisticated, highly skilled support provided by experienced workers, characteristics that can be scarce in a high-turnover industry with persistent labour shortages and almost no barriers to entry. However, the Commission ultimately backs away from making recommendations on the most controversial issues, including the price-setting matrix for disability support services, known as the Disability Support Worker Cost Model. Unchanged, this will continue to constrain the sector’s ability to create high-quality working environments conducive to continuous learning that will support people with intellectual disabilities in the way they want to be supported.

Research ethics for all: Development of a social-behavioral research ethics education program for community research partners with developmental disabilities

BackgroundPeople with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles. ObjectivesWe developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities. MethodsWe collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility. ResultsThe training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher. ConclusionsResearch Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

Measuring the adoption of internet and communication technologies among practitioners in routine disability services: a stepped inclusive approach

Purpose Existing measurements of the use of information and communication technologies (ICTs) among practitioners in disability services often treat ICT adoption as a monolithic concept, overlooking its multifaceted nature within the disability field. This study introduces a stepped, inclusive approach to capturing this complexity, elucidating disparities in the utilization of various ICT dimensions, the present vs. anticipated use, and variations among different clinical-demographic groups. Materials and methods A cross-sectional survey was conducted in Hong Kong, gathering valid data from 324 practitioners spanning diverse disciplines and disability services. Results Data analysis produced a three-factor model categorizing ICT tools into (1) information and communication tools, (2) screening and monitoring tools, and (3) treatment and rehabilitation tools. The first category was identified as the predominant ICT utilized currently, with significant projected growth in the latter two categories’ usage. Variances in current ICT adoption were influenced by practitioners’ roles, clientele, positions, affiliating agencies, and educational attainments. Conclusions This research provides a deeper understanding of the key dimensions of ICT adoption within disability services. It underscores the importance of devising specific and customized strategies for the effective integration of ICTs, ensuring a more tailored approach to meeting the unique demands of the disability field.

Pelayanan Sosial Sebagai Upaya Pemenuhan Keberfungsian Sosial Disabilitas Netra di UPTD Rumoh Seujahtera Beujroh Meukarya (RSBM) Ladong Aceh Besar

Unlike normal people in general, people with visual impairment experience limitations in carrying out daily activities. In Indonesia, the number of disabilities in 2022 reached 1.5% or around 4 million people. One way to fulfill the social functioning of blind disabilities is to increase motivation and develop potential through rehabilitation at UPTD Rumoh Seujahtera Beujroh Meukarya (RSBM). This study aims to determine what forms of social services for visual disabilities at UPTD RSBM. The type of research used is a qualitative approach with descriptive methods through observation, documentation, and interviews with 5 informants. The results of this study obtained data that the form of social services is in the form of residential rehabilitation social services (Boarding) with several activities such as: Care and nurturing, mental and spiritual guidance, physical guidance, social guidance and psycho social counseling, skills guidance and accessibility services such as massage massage skills, braille reading and writing skills, rattan weaving skills, art skills, jaws computer technology skills, social assistance and resocialization guidance.

Resident Care in the “In-Between Time”: Cross-Sector Perspectives on Enhancing Synergy Between Palliative Care and Permanent Supportive Housing

Despite established disparities in serious illness prevalence among formerly homeless people living in permanent supportive housing, there is a dearth of research aimed at promoting and enhancing palliative care service delivery in this setting. This paper describes current practices, perceived barriers, and recommendations in permanent supportive housing for residents living with serious illness through a thematic analysis of interviews with cross-sector stakeholders ( n = 30) from the Research and Supportive Care at Later-life for Unhoused People (RASCAL-UP) study. Themes identified across resident care, program collaboration, and policy and environment areas included: (1) unique resident care needs; (2) on-site relationships; (3) adaptation of aging, disability, and healthcare services for residents; (4) internal implementation barriers; (5) preparing the environment for serious illness; and (6) missing levels of care. From these results, we put forth recommendations for future collaborative care intervention development, supportive housing policy, and capacity-building efforts for healthcare and housing providers alike.

Will psychology ever ‘join hands’ with disability studies? Opportunities and challenges in working towards structurally competent and disability-affirmative psychotherapy for energy limiting conditions

Despite sustained efforts among critically informed scholars to integrate thinking from disability studies into psychology, the psy disciplines continue to largely neglect the lived experience of disabled people and overlook...

Designing the Food and Lifestyle Information Program (FLIP) culinary nutrition intervention for adults with mild-to-moderate intellectual disability.

People with intellectual disability have diverse needs and experience higher rates of diet-related chronic disease such as type 2 diabetes compared to people without disability. However, they are infrequently included in development and implementation of interventions to address diet-related chronic disease. The present study describes the process to plan, develop and refine the Food and Lifestyle Information Program (FLIP) culinary nutrition intervention for adults with mild-to-moderate intellectual disability. The project was initiated by a disability service provider and was guided by the Cook-Ed™ model and inclusive research principles. Initially the disability service provider and academic research team members co-designed pre-program consultation and pilot studies, and draft program resources. Pre-program consultation explored paid disability support worker (n = 10) perceptions of cooking and food skills, nutrition priorities and optimal program format, which guided further program drafting. Program resources and pilot study design were further developed and refined with co-researchers with lived experience of intellectual disability who attended a pre-pilot and then pilot study sessions as remunerated co-facilitators. Key characteristics of the FLIP intervention arising from pre-program consultation included providing cooking task instruction in small steps, enabling participant choice in program activities, promoting an inclusive and social atmosphere, and providing paper-based resources. FLIP intervention co-design was enabled through ongoing input from the disability service provider and people with lived experience of intellectual disability. Evaluation of FLIP feasibility, acceptability and preliminary effectiveness to improve diet-related health is underway.

Tail Lights

How quickly time flies – Christmas and NewYear are in the rear view mirror and we arehurtling towards Easter! Phew! I wanted to learn more about Disability in(Medical) Education - so I hunted down DrBeth Dillon (MBChB 2023, co-founder andTrustee of the award winning LUNA Project),Scott Duguid (Disability Services, UoG) andProf Ines Alvarez (Dept of Education UoG,Programme Leader for the MEd in InclusiveEducation) to learn more. I have included anexcerpt of Beth’s interview for your perusal.Niall Holden (current student) has alsowritten a piece to share his experiences andknowledge on this complex topic.I found out “Disability” is a broad category:ranging from visible and physical disabilitiesto invisible ones such as long term chronichealth, mental health issues, ADHD, Autismand specific learning disabilities such asDyslexia. Dyslexia is common – affecting 10%of the population worldwide. Highfunctioning learners with (undiagnosed)dyslexia can “mask” and perform exceedinglywell academically until their “usual” supportis reduced - such as when they start life inHigher Education. Students with any disability are entitled tohelp (they are protected by law under the UKEquality Act 2010, particularly while inEducation). “Help” can range from extra timefor assessments, flexible deadlines,(“reasonable adjustments”) to individualised,personal learning support with study skills,computer software, mentoring and coachingto help adjust to life - and thrive! - atUniversity. Scott wanted me to raise awareness amongstudents that the doors to DisabilityServices are wide open. Even if you are notsure if you have a disability, fill out a formand Disability Services will get in touch,provide support if appropriate and how toprogress if not. Also, 18 March markedNeuroDiversity Week. Here is a fantasticresource to check out:https://linktr.ee/neurodiv.I am very much looking forward to see allyour “Visual Abstracts” – this is youropportunity to showcase the projects youhave been doing throughout the year, getpublished in a peer reviewed journal and thefirst 5 can even earn a little bit of money(enough for a nice meal out). The best visualabstract of the year will be selected byProfessor Matthew Walters – winninganother £100! Get your skates on and getyour abstracts in! Finally, a little plug for my fabulously exciting and fun summer elective: NavigatingUncertainty in Medicine. Fill out this form: https://forms.gle/k5ngU1D9FGyn9XCA8 andspend 4 weeks with super star doctors and moi! Until the next Taillights! Cindy.

Disability Tax in the Welfare State: Uncertainty and Resentment about Disability Services in Finland

Disability Tax in the Welfare State: Uncertainty and Resentment about Disability Services in Finland

Shifting the Focus: Intra-acting with Diverse Agencies and Happy Objects in a Day Center of Disability Services

The article is based on the author’s experiences of facilitating creative movement groups in a disability services day center. Through artistic and performative research, she investigates different forms of agency in and around the movement groups. She draws on theoretical perspectives from critical disability studies, feminist new materialism and affect studies, par­ticularly focusing on Sara Ahmed’s (2010) notion of the “happy object,” to challenge the human-centric view of arts education and artistic agency. She proposes a shift of focus in arts education from individual agents to the intra-action of diverse agencies in art making, teaching, and learning in diverse contexts.

Advanced Needs for Disadvantaged People: Guaranteeing a Sexual and Affective Life Through Disability Services

This study presents a group of personal stories regarding disabled people who wish to have a sexual and affective life, most of them considering the explicit consent of the partner. They are handled by their original families and their socio-sanitarian services, which take care of them, but they experience difficulties handling these “delicate matters”. Workers and othe caregivers who take care of people with disability pursue pro-social and rightful mission. Sexuality is one of the basic needs of people, but there is cultural resistance on the territory, in services, operators and families who take care of fragile people, and does not accept this need or are not sufficiently prepared to consider it. Sexuality is a complex topic in this case; it triggers psycho-social aspects, but also medical and legal challenges which are often too complex for these people and for people who take care of them.