Disability Service Providers Research Articles

‘But What to Change?’: Moving Forward in Public Library Information Service Provision for People with an Invisible Disability

This project will explore the match between public library service provision and delivery and the needs of people with invisible disabilities in Australia. A mixed method approach will be applied, utilising interviews and surveys with people with an invisible disability and library service providers.

An examination of the nutritional intake and anthropometric status of individuals with intellectual disabilities: Results from the SOPHIE study.

The prevalence of obesity appears greater in people with intellectual disabilities than those in the general population. This study aimed to examine the nutritional intake and anthropometric status of individuals with intellectual disabilities. Participants aged 16-64 years were recruited from intellectual disability service provider organizations ( n = 131). Data were collected using questionnaires; 4-day food dairies and weight, height and waist circumference measurements. Participants' mean body mass index (BMI) was 29.4 kg/m2 ± 6.1, 2.4% were underweight, 22.6% were normal weight, 28.2% were overweight and 46.8% were obese. Having a diagnosis of Down syndrome ( p = 0.03) was associated with increasing BMI. Increasing waist circumference was associated with increasing severity of ID ( p = 0.04). The mean-reported energy intake was 1890 kcal/day. Mean energy intakes from sugar, fat and saturated fat were above recommendations and few participants met micronutrient recommended daily amounts. This study highlights the alarming prevalence of overweight and obesity and poor diet quality of individuals with intellectual disabilities.

What's the Harm? Harms in Research With Adults With Intellectual Disability.

Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

Allies for Inclusion: Disability and Equity in Higher Education: ASHE Volume 39, Number 5 by Karen A. Myers, Jaci Jenkins Lindburg, & Danielle M. Nied (review)

Reviewed by: Allies for Inclusion: Disability and Equity in Higher Education: ASHE Volume 39, Number 5 by Karen A. Myers, Jaci Jenkins Lindburg, & Danielle M. Nied Edlyn Vallejo Peña Karen A. Myers, Jaci Jenkins Lindburg, & Danielle M. Nied. Allies for Inclusion: Disability and Equity in Higher Education: ASHE Volume 39, Number 5. San Francisco: Jossey-Bass, 2014. 152pp. Paperback: $29.00. ISBN: 978-1-118-84611-7 Today, 11% of college students report having a disability (U.S. Department of Education, 2009). Federal legal mandates, such as the Americans with Disabilities Act of 1990, coupled with growing enrollments of students with disabilities, have increasingly prompted postsecondary institutions to serve the unique and complex needs of their students over the past 25 years. In their monograph, Allies for Inclusion: Disability and Equity in Higher Education, Myers, Lindburg, and Nied (2014) bring attention to the ways in which institutional allies can support the needs and successes of college students with disabilities. The monograph is useful “to serve as a guide to promote the inclusion of people with disabilities” (p. 5) for researchers and higher education practitioners. The seven-chapter monograph departs from the majority of publications about students with disabilities in higher education. That is, the central purpose of Allies for Inclusion is to underscore and explore the role of faculty, staff, and administrators as allies in the lives of students with disabilities. The authors move a step beyond placing the onus of responsibility for postsecondary success on students with disabilities and disability service providers themselves toward a shared model of campus ownership and responsiveness toward students. The authors begin their first chapter with a discussion on preparing institutions of higher [End Page 310] education for a future of equity and inclusion for students with disabilities. It effectively establishes the significant role of allies and argues that the inclusion of people with disabilities is the responsibility of all campus constituents, not just those who work in disability and affirmative action offices. This theme of shared responsibility is woven into the fabric of the rest of the chapters. The second chapter details an overview of disability history in higher education. The authors describe critical pieces of legislation, policies, and cases that made an impact on disability movements in society, and in turn, institutions of colleges and universities. The unfolding descriptions of key decisions made in the United States capture the “spirit of change” over the last 60 years for students with disabilities. The authors describe different types of disabilities in the third chapter, with the majority of college students having been diagnosed with a learning disability or ADD/ADHD. Meanwhile, autism spectrum disorders and psychological disabilities are on the rise. The chapter summarizes research studies that report students’ experiences with faculty, disability services, and navigating campus cultures. The authors remind their readers that the whole campus is responsible for cultivating an inclusive climate. “Disability education is for everyone, by everyone. Through collaborative efforts and open communication, an entire campus community has the potential for providing a welcoming, inclusive environment” (p. 47). The next chapter focuses on “Understanding Campus Complexities: Problems, Challenges, and Marginalization.” The authors detail different theoretical lenses through which people with disabilities are viewed and treated, not just in society but in higher education. The models range from perpetuating damaging perceptions toward people with disabilities to a framework rooted in social justice. These models and frameworks include the moral model, the medical model, the functional limitations framework, the minority group paradigm, the social construction model, and the social justice perspective. Ultimately, the goal is to move toward a lens that “challenges those [traditional] assumptions, celebrating the uniqueness of individual differences while focusing on social change and transforming oppressive structures” (p. 53). The chapter also delves into attitudes about disability, as well as campus services, including serving veterans with disabilities. While the topics in the fourth chapter provide practitioners and researchers with critical information about ways in which to frame and serve students with disabilities, the major drawback of the monograph reveals itself in this very chapter, alerting the readers to a limitation that is systemic to the monograph. That is, Myers, Lindburg, and Nied fail to explain the ways in...

Investigation of training and support needs in rural and remote disability and mainstream service providers: implications for an online training model.

Objectives It is known that there are difficulties in recruiting and retaining practitioners in rural and remote communities and that access to support and professional development can be key in breaking this cycle. Technology provides a possible solution not only for increasing access to these opportunities, but also in building community capacity to support children with autism. The aim of the present study was to investigate the current learning and support needs within rural and remote professionals prior to setting up a model of support. Methods An online survey was used to gather information from service providers in rural and remote communities on their demographics, current skills and confidence in working with clients on the autism spectrum, current supervision and professional development, identified learning and support needs, and the availability and uptake of technology for accessing professional development. Results Respondents reported below average levels of perceived confidence and skills when working with children with autism, most notably children with challenging behaviour. Half the respondents do not currently attend supervision sessions, with only 15% receiving regular supervision (fortnightly or more often), and 66% of respondents had travelled more than 3h to access professional development workshops. The majority of participants had access to technology and over half had already used this for online training. Conclusion Overall, service providers in rural and remote areas are generally not currently meeting their needs in terms of frequency of supervision and professional development. The present needs analysis identifies key areas for learning, the ideal frequency of support and the acceptability of using technology to deliver this support. This information will guide future researchers in the development of an evidence-based model that will be accessible and meaningful to its participants. What is known about the topic? It is known that there are difficulties in recruiting and retaining practitioners in rural and remote communities and that access to support and professional development can be key in breaking this cycle, which may be triggered by geographical isolation. Technology-delivered intervention and support, also known as eHealth or Telehealth, has been used successfully in the disability sector for medical rehabilitation, direct intervention, employment support and support groups, but there is little evidence as to how technology is received by and implemented with disability and mainstream service providers supporting children with autism living in remote regions. What does this paper add? This paper provides an insight into the current skills and confidence of a broad range of service providers, including educators, allied health therapists and therapy and community support workers, in working with children with autism. This paper also investigates the experience, feasibility and potential uptake of a technology-driven program of support and professional development in rural and remote Australia. Finally, this paper provides an insight into the desired frequency of training and support, as well as identified learning support needs. What are the implications for practitioners? These findings have and will continue to guide practitioners in the development of an evidence-based, technology-driven model of supporting rural and remote staff working with children with autism. Technology has the potential to provide practitioners in geographically isolated areas with access to more responsive, collaborative and individualised professional support and training. Such practice may improve the skills of practitioners and the level of support they can provide their clients with autism, with the added potential of increasing staff retention in rural and remote areas of Australia.

Equivalence, equality and equity for prisoners with a borderline intellectual disability: reflections from the UK

Purpose The purpose of this paper is to discuss the legislative and policy architecture governing the protection of individuals with an intellectual disability (ID) in the UK, and whether these protections extend to protect those with a borderline ID (BLID) in prison. Design/methodology/approach The paper presents policy and legislative analysis. Findings This paper argues that the legislative definitions of disability are broad and draw on a needs-based understanding of disability, meaning that those with a BLID – if they experience disability – should be included in these protections. But the clinical definitions of ID that guide access to support services tend to exclude those with a BLID. Notions of horizontal and vertical equity are invoked to examine the spirit of “equivalence” captured in legislative instruments, and how these filter into policy that may ultimately be discriminatory to those with a BLID. Research limitations/implications If the founding principle of equality legislation is equivalence, and an argument can be made that those with a BLID are protected from disability discrimination, public authorities will need to reconcile their use of clinical diagnostic cut-offs to justify service provision inside and outside of the prison estate. In essence they are faced with a choice: consider how best to provide equitable support for those with a BLID (which may not necessarily mean identical support), or risk breaching these fundamental rights. Practical implications The paper calls into question the extent to which the current suite of ID-related services (both in the community and in prison) fulfil a public authority’s obligations for vertical and horizontal equity that are captured in the disability discrimination legislation. Specifically authorities must consider whether: replicating services in prisons serves the particular needs of the prison population, or is horizontal equity only partial fulfilment? The higher than expected numbers of BLID in prison justify consideration of different services for these different needs? There is an opportunity to rethink the conceptualisation of disability service provision in the National Health Service from one defined by diagnostic bands rather than a socio-ecological understanding of need, and in doing so whether the needs of the BLID group in prison are being suitably met. Originality/value The paper provides a line of legal argument and analytical thought useful to those seeking to challenge the non-provision of support for those with a BLID; particularly those who are especially disadvantaged in prison. This paper draws attention to the disconnect between legislative intent and policy operationalisation for those with BLID. Further research and possible legal challenge is needed to clarify whether this amounts to direct or indirect discrimination.

Identifying Rehabilitation Workforce Strengths, Concerns and Needs: A Case Study from the Pacific Islands

Purpose: This exploratory case study was undertaken to inform capacity development of the rehabilitation workforce in member nations of the Pacific Islands Forum (PIF). Method: Participants at the 1st Pacific CBR Forum in June 2012 were key informants for this study. They comprised the disability focal points from government departments in each of the 14 countries, representatives of DPOs and disability service providers. The study was conducted in 3 phases: a template to gather data on rehabilitation workers; key informant interviews; and, stakeholder workshops to identify strengths and needs of the rehabilitation workforce in the Pacific. Results : The detailed case study findings suggest two critical drivers for rehabilitation health workforce development in the Pacific context. The first is leadership and commitment from government to serve rehabilitation needs in the community. The second is the urgent need to find alternative ways to service the demand for rehabilitation services as it is highly unlikely that the supply of specialist personnel will be adequate. Conclusions : A multi-sectoral view of health and social service systems is a key element for the development of a rehabilitation health workforce. The endorsement of the WHO Global Disability Action Plan by the World Health Assembly in 2014 further enhances the opportunity to work collaboratively across sectors in Pacific countries. Specialist personnel are and will remain in short supply. There is opportunity for the region to lead the development of alternate workforce mechanisms through the training and supply of skilled community-based rehabilitation personnel.

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research.

People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

Clinicians’ use of sexual knowledge assessment tools for people with intellectual disability

ABSTRACTBackground Many people with intellectual disability have limited sexual knowledge. Several assessment tools have been developed to assess the sexual knowledge of people with intellectual disability. This paper examines how clinicians’ are using these tools.Method This research uses a constructivist grounded theory approach. Semistructured qualitative interviews were conducted with clinicians who use sexual knowledge assessment tools.Findings and Discussion Assessment of sexual knowledge is not routine in disability service provision. Sexual knowledge is typically only assessed when there has been an incident of problematic sexualised behaviour. This reactive approach perpetuates a pathological sexual health discourse.Conclusions Clinicians using assessment tools said that they need the tools to support work they do in relation to sexual health of people with intellectual disability. However, they also reported that the tools have gaps and are not fully meeting their needs or the needs of people with intellectual disability.

장애인서비스 제공자의 인권 인식, 사회적 지지, 사회통합과의 관계

장애인서비스 제공자의 인권 인식, 사회적 지지, 사회통합과의 관계

Models of disability support governance: a framework for assessing and reforming social policy

In many developed countries, the provision of disability services has undergone significant transformations, from institutional to community based care, and from oganisational to personalised funding. Yet delivering disability support remains an ongoing challenge for governments. Specifically, the relative success of different types of disability support governance is convoluted and problematic given the diversity and complexity of disability support systems and the people they serve. To enhance the systematic analysis and evaluation of disability support governance, this paper conceptually advances four distinct models based on the locus of control and coordination of such support: uncoordinated; casework governance; dwelling‐based governance; and user‐coordinated. Using illustrations from case studies of individuals receiving care, the identification of these ideal types enables their relative strengths, weaknesses, and the occasions of governance failure to be articulated. No one model is universally applicable to people, nor immune to failure. Furthermore, the paper presents a novel approach to visualising actual disability support arrangements as social networks. The utility of such visualisations for analysing individual and system‐ wide arrangements is outlined. In the context of Australia's developing National Disability Insurance Scheme, these conceptual and analytical developments are argued to be important tools for policy and service analysis and reform.

A national survey of offending behaviour amongst intellectually disabled users of mental health services in Ireland.

Offenders with an intellectual disability pose a major challenge to Intellectual Disability Service providers in the Republic of Ireland. This is especially so as no national Forensic Intellectual Disability Service currently exists. The Forensic Intellectual Disability Working Group of the Irish College of Psychiatrists was established in order to take steps to address this issue by establishing the level of need for a Forensic Intellectual Disability Service in Ireland and developing a college position paper. No previous study has been carried out to measure offending behaviour amongst persons with an intellectual disability attending mental health services in Ireland. A postal survey was undertaken targeting the lead clinicians of all Intellectual Disability Psychiatry, General Adult Psychiatry and Forensic Psychiatry Services in the Republic of Ireland. This survey requested anonymous data regarding service users with an intellectual disability and offending behaviour in this population. Data relating to 431 service users was returned. Those reported to engage in offending behaviour were predominantly young males. Assault was the most common offence type. A significant number of serious offences such as unlawful killing, sexual assault and arson were reported. There is an urgent need for the development of a Forensic Intellectual Disability Service in the Republic of Ireland. The current efforts of the National Forensic Mental Health Service to establish such a service by the creation of a post of Consultant Forensic Psychiatrist (special interest in intellectual disability) are to be welcomed.

Support college students with disabilities who do not identify and self‐advocate

One major goal as a disability service provider is to promote success for all students with disabilities. Thus, you probably provide a lot of encouragement to students with disabilities to self‐advocate and to request accommodations to succeed in their courses.

Accessibility and Responsiveness Review Tool: community agency capacity to respond to survivors with disabilities.

For persons with disabilities who have experienced trauma in the forms of abuse and violence, options for accessible and trauma-informed services are often limited. Using a self-assessment and planning process, disability service providers and victim/survivor service providers are able to strategize ways of addressing the needs of survivors with disabilities. The Accessibility and Responsiveness Review Tool (Review Tool) incorporates the principles of universal design and trauma-informed practices into an agency-wide discussion tool leading to increases in knowledge, reduction in barriers, and overall improved programs for survivors with disabilities. Results of agencies that participated in the Review Tool process are presented.

Context, Service Provision, and Reflections on Future Directions of Support for Individuals With Intellectual Disability in Singapore

AbstractThe author examined how individuals with intellectual disability (ID) are supported in Singapore and what are the needs for further service development. Service provision for individuals with disabilities in Singapore is broadly reflective of its changing needs as a developing nation. Disability service provision began in the pre‐World War II period and then advanced greatly during the last 20 years with the proliferation of early intervention and specialized programs for school‐aged children as well an expansion of adult‐focused supports. Social services are organized along the “Three Ps Model” (public, private, and people), involving a collaboration of nongovernmental organizations, the government, and the corporate sector. With respect to school‐age services, although a fairly comprehensive system has been put in place to support the education of students with disabilities, the system continues to evolve. The situation is more limited with respect to supports for adults. With Singapore reaching high levels of employment, there is an impetus for some individuals with ID to be part of the workforce; for those without work skills, day options for some include workshops and developmental activity centers. For parent carers, supports remain limited and there is a disparity between the goals outlined in the World Disability Report and currently available options for most adults and their families. Recommendations include studies to better understand the population of persons with ID and their needs, a reexamination of the diffused responsibility for disability‐related services within the government, and an evaluation of the way services are delivered by the voluntary sector.

Contesting disabling conditions of life in the Global South: disability activists’ and service providers’ experiences in Guyana

This article addresses an important gap in our understanding of issues of impairment and disability, namely challenges facing disabled activists and service providers in the majority world context of the developing nation of Guyana. The article argues that developing a southern standpoint on impairment, disability, disability activism and service provision requires a reframing of disability issues as matters of distributive justice and not only human rights. Challenges facing disability activists and service providers in Guyana included trying to combat internalized ableism, financial and cultural barriers to political engagement and visibility, tensions in claiming or rejecting disabled identities and difficulties in accessing foreign aid funding for disability initiatives. The article concludes by stressing the importance of rethinking how we do disability studies so that it allows critical analysis of the dynamics of a global capitalist corporeal class order in the context of the majority world.

People with disabilities and professionals’ views on access to health services in Western Sydney

Background: One in five Australians have a disability with this number likely to grow, largely driven by increases in population and population ageing. Understanding the current barriers to people with physical disability accessing the health care system has important implications for health and public health. Aim: To explore the experiences of people with physical disability and health care service providers of accessibility of health services in Western Sydney. In particular this research asks: What are the non-physical barriers experienced by people with physical impairments to accessing health care services in Western Sydney? Methods: In order to sample a continuum of experiences, stratified purposive sampling was used to identify participants across the diverse populations of Western Sydney. In-depth semi-structured interviews and focus groups were conducted with people with disability and health care service providers (general practitioners, nurses, allied health). The interviews were digitally recorded and transcribed and analysed using a constant comparison method. Results: To date seven people with disability and four service providers have participated in the study. People with disability described a number of non-physical barriers to accessing services in WS including: financial (cost of services), service (lack of protocols to treat people with disability, waiting list, number of service providers in the area) and information (access to, information about disability appropriate health services, rules about health entitlements). They also described complex social needs that have a significant impact on their health (employment, housing, timely access to equipment); which are not always considered by health care service providers. Some describe how they feel “invisible” from the high counters at general practices and hospitals to the World Congress on Integrated Care 2014, Sydney, November 23-26, 2014. International Journal of Integrated Care – Volume 14, 8 December – URN:NBN:NL:UI:10-1-116651– http://www.ijic.org/ back door they use to enter a dentist office. Participants also highlighted the lack of disability awareness training of service providers – “Not used to working with people with disability”. Service providers also reported that clinicians and support staff require more education about disability. While service providers perceive they were compassionate and caring when providing care to people with disability. In contrast people with disability reported a lack of compassion and understanding from some health care service providers. Conclusion: The preliminary results of this study highlight the importance of “disability awareness” by service providers and support staff. There is also a need to address the social and economic barriers to access health services experienced by people with disability. It is important to improve the effectiveness of and determine in what ways the person, the service provider, and the policies of service delivery systems share responsibility for access to health and health care (accountability).

Metro-Regional Intellectual Disability Network (MRID.net) A Statewide Collaborative Multidisciplinary Care Model

Objective: People with intellectual disability (ID) frequently have multiple co-morbidities requiring a complex network of supports. Integrated care is essential to optimize outcomes and minimize adverse events such as unnecessary hospitalisation, but access to specialized expertise can be particularly challenging for underserved and rural/remote regions. The goal of the MRID network project is to pilot an innovative service model that would leverage existing resources to improve access to coordinated specialist health services for children, adolescents and adults with ID in regional areas of New South Wales (NSW), Australia. Methods: The MRID network project was funded by the NSW Government’s Ministry of Health. We adopted a partnership approach including local needs analysis and ongoing formative evaluation to ensure the co-production of a specialist service model meeting the changing needs of consumers, carers, and local government, non-government, health, disability, mental health, and education services. A hub-and-spoke service model was combined with telemedicine support. Key features included: • A multidisciplinary team of paediatric, medical, psychiatric, specialist nursing and allied health staff providing access to range of specialised services • A co-design model engaging local stakeholders from government and non-government sectors to provide readily accessed, client-centred, holistic, coordinated care complemented by family and carer support • Capacity building of local services through provision of educational resources, specialist support and networking World Congress on Integrated Care 2014, Sydney, November 23-26, 2014. International Journal of Integrated Care – Volume 14, 8 December – URN:NBN:NL:UI:10-1-116677– http://www.ijic.org/ • Implementing a flexible clinic structure, including clinics in various locations such as schools and group homes and the use of Telehealth to provide assessments and consultations at the right place and time for the client • The co-development of a “Referral Guide” for disability service providers to request specialist clinical support • Development of data linkage systems to support coordinated care. Key Findings: Partnerships were developed with NGO disability service providers, ADHC, DEC, and health in ten localities across NSW. As of 30 June 2014, fourteen different sites had been developed to host a range of comprehensive psychiatry, medical and school clinics, and 688 clients had been registered, including children, adults, and older adults. The resulting MRID model successfully changed the focus in participating services from ongoing management by specialists, with severe constraints due to limited resources, to a consultative model emphasizing support and education of more generalist services. Increased access to expertise reduced unnecessary hospitalisations. Conclusions: The MRID model demonstrated that an innovative service model could enhance outcomes and access to specialist services for people with ID in regional NSW. The model can be used as the foundation for the development of a state-wide service model for specialist ID service delivery.

A multi-perspective examination of the barriers to field-placement experiences for students with disabilities

In light of the innumerable changes in post-secondary environments that reflect a movement toward inclusive education and a reliance on real-world evaluations in the form of field placements, we report on our findings from a collaborative research project that examines field placement experiences from a variety of perspectives. Our research project, prompted by our own observations of the barriers to equity for field placement students with disabilities at our institution, is an attempt to reflect on our disability service and our teaching and learning practices. We expanded on the traditional focus in the field by creating a multi-dimensional cross-sector collaboration and by including the perspectives of Professional Program Directors, Field Placement Coordinators, and students with disabilities. We found that all stakeholders reported barriers to success in field placement for students with disabilities, saw few solutions, and anticipated the barriers to continue into the world of employment. We discuss these findings in relation to the implications for teaching and learning and for disability service provision in post-secondary institutions.