Disability Service System Research Articles

Dancing the Crisis and Its Transformative Potential: A Cooperative and Performative Research With an Italian Disability Service System During the Coronavirus Pandemic

This study draws on research that investigated transformative learning with reference to complexity theories. It describes the use of dance-informed performative autoethnography employed to analyze and interpret participants’ experience of crisis in research conducted within a disability service system in Italy during COVID-19 pandemic. Firstly, the use of this method of inquiry after the initial data collection was useful in deepening the crisis experience. Secondly, the representation of the data through dance performance fostered new interpretations of the crisis situation that further validated the presentation of the data and had the secondary advantage of reinterpreting the entire experience.

A flawed model or weak implementation? A critical review of the approach to group homes taken by the Disability Royal Commission

Group homes have been an important option for people with intellectual disabilities leaving the family home or institutions. They were one focus of the Royal Commission on Violence, Abuse, Neglect and Exploitation of People with Disabilities. Much evidence was collected about harm experienced by people in group homes through submissions, and dedicated and other hearings about disability services more generally. In its Final Report the Commission considered group homes to be both a flawed model and subject to weak implementation similar to that identified across the Australian disability service system more generally. This article describes the Commission’s approach to group homes, the evidence heard, and its conclusions; and critiques its stance, processes, and recommendations, identifying links to the NDIS Review published after the Commission’s Report in 2023. The Commission’s recommended reforms to practice, and replacement of group homes with alternative options reflect current policy directions, but raise issues that will be important for implementation; including; uncertainty about alternatives to group homes, the risk of alternatives not having better outcomes and thus the loss of good services, risk of neglecting quality of support practice in new alternatives and recurrence of institutional practice in them, and potential negative impacts on existing residents of signalling group homes as a flawed model. The Commissions’ approach missed opportunities for appreciative enquiry about conditions that lead to good outcomes in some group homes. The article concludes by considering the benefits for people with intellectual disabilities of singling out long-term residents and people with complex or high support needs, together with the potential for a quicker pace of change that may result from the Commission’s work.

The role of microboards in enhancing quality of life for children with intellectual disability and their families

AbstractDisability support systems have not consistently used family‐centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family‐centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability‐related services, and leisure and enjoyment of life. The MB4C model aims to enhance families’ knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family‐centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family‐centered disability service system that works in partnership with families with disability.

The Evolution of Customised Employment and the Influence of the NDIS on Customised Employment Practice in Australia

Abstract Introduction: The New Directions Report (1985) established open employment for persons with a disability as a goal of disability service systems in Australia. Customised Employment is an emerging employment strategy that supports people with complex disabilities to find and obtain employment, while supporting Convention on the Rights of Persons with Disabilities, Article 27 principles. Aims: This paper examined the origins and evidence for Customised Employment since the passing of the National Disability Insurance Scheme Act 2013 and the impact of the NDIS on open employment practice underpinned by Customised Employment. Method: A literature search of peer-reviewed papers was undertaken using the EBSCO database. This was followed by a review of journals that focused on disability employment. A search of grey literature limited to studies and reports of Australian-based employment was conducted to ensure that all available data was captured. Sixty-seven peer-reviewed papers met the criteria, while only six papers met the criteria within the grey literature search. Results: The literature supporting Customised Employment and Discovery highlights the work of academics and practitioners in developing the evidence base for practice. While the descriptive studies highlighted the effectiveness of Customised Employment, they failed to meet the threshold for empirical evidence, highlighting the need for a random control trial or correlation studies. Conclusion: Customised employment is an emerging employment model with promising results that have yet to meet the threshold for evidence-based practice. While the NDIS supports Customised Employment through capacity building and school leaver transition funds, research funding is needed to ensure that it is applied with fidelity to the existing and emerging evidence

Perhaps workforce equilibrium has been achieved: We just don’t like the outcome

The vacancy rate associated with Direct Support Professional positions within the intellectual disability service system was examined. Based on an increasing number of persons receiving residential services and a similarly increasing number of Direct Support Professionals, it was suggested that an equilibrium between supply and demand had been reached. It was acknowledged that this “equilibrium” clearly does not meet the satisfaction of people working in and supported by the field. A possible explanation was offered.

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges.

The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care. Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care. Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.

Caregivers' perspectives on future planning for their adult children with intellectual disabilities in Romania.

Much of the research and program innovation regarding future planning for adults with intellectual disabilities has occurred in countries with well-developed disability service systems. This study explored how family caregivers planned for their adult children's future caregiving needs in Romania, a country with a limited array of disability services. In this exploratory qualitative study, we conducted 30 face-to-face interviews with caregivers of adults with intellectual disabilities in Romania. We used thematic analysis to analyse the transcribed and translated interview data. The majority of participants, while believing that future planning was necessary, had not engaged in planning and had no supports for planning. As there were few disability services, the majority of the participants reported that they could not engage in planning, and many avoided thinking about the future. Romania and other countries with fewer disability services likely need alternative models of future planning than those that have been developed and tested previously.

Inclusion and equity: Experiences and dilemmas of disability resource centers at world-class universities

The disability resource centers (DRCs) of world-class universities play a central role in achieving the goal of promoting inclusion and equity in higher education. To provide a reference for the development of inclusive education in China’s double first-class universities, the DRCs of the top 10 universities were selected as typical cases to analyze their experiences and dilemmas. Regarding service mechanisms, DRCs aimed to ensure equitable access so that students with disabilities (SWD) could fully and holistically participate in universities, thereby improving inclusion on campus. In addition, DRCs established official websites as a service platform and developed clear service procedures and grievances to ensure the quality of service. Regarding service content, DRCs emphasized enhancing the disability awareness of campus members and provided support and services for SWD in their study, life, and employment to ensure that SWD could receive high-quality higher education. However, DRCs also suffered from dilemmas of low service application rates, flawed service mechanisms, and controversial service quality. Accordingly, suggestions and implications are proposed to improve inclusion and equity in China’s double first-class universities, including establishing a collaborative disability service system with DRCs as the core, optimizing the service mechanism, and providing personalized and diversified support service content.

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

Community-based social care models for indigenous people with disability: A scoping review of scholarly and policy literature.

Disability is experienced and understood by Indigenous people internationally in distinct ways from other populations, requiring different approaches in disability services. Furthermore, Indigenous populations access disability services at low rates. In response, policymakers, service providers and Indigenous organisations have developed specific models of care for Indigenous people with disability. Social care services, comprising personal care, transport and social activities, can support Indigenous people with disability to live with their families and in their communities. However, little is known about the range of social care models for Indigenous people with disability. To inform policy and practice, we conducted a scoping review of community-based models of social care designed to meet the needs of Indigenous peoples in Australia, Aotearoa New Zealand, Canada and the United States. Our methods were informed by best practice scoping review principles and a collaborative approach that centred Indigenous voices within research appraisal and project governance processes. Literature searches (conducted March-April 2021) yielded 25 results reporting on 10 models of care. We identified two over-arching themes (funding and governance arrangements; service delivery design) that encompass nine key characteristics of the included models. Our analysis shows promising practice in contextually relevant place-based social activity programs, support and remuneration for family carers and workforce strategies that integrate Indigenous staff roles with kinship relationships and social roles. While more research and evaluation are needed, disability funding bodies and service systems that facilitate these areas of promising practice may improve the accessibility of social care for Indigenous peoples.

Family-oriented practice in disability Services in Hong Kong: A cross-sectoral social work perspectives in the fields of intellectual disability and mental illness.

Supporting the families of people with disabilities has become a crucial aim of disability services. In disability services, where people with disabilities are usually positioned at the centre of service provision, family-oriented practice implies practice directions to work with clients' families in service delivery. The study aims at exploring how social workers in intellectual disability services and mental health services deliver a family-oriented practice in Hong Kong. We performed a qualitative analysis, using in-depth interview data collected from two broader studies about social workers' experiences in the fields of intellectual disability and mental illness respectively. Thirteen participants in intellectual disability settings and another 13 participants in mental health settings shared their understanding of and concern with family-oriented practice. Four themes were identified in the participants' accounts regarding the importance of family connectedness, family members' constructions of clients' identity, the scope of activities and the intervention space between individual and family. These findings reflect that family-oriented practice was jointly shaped by clients' family systems and disability service system, and shed light on the strategies for future service development at the broader systematic level.

Mental health service availability for autistic youth in New York City: An examination of the developmental disability and mental health service systems.

Autistic children and adolescents experience high rates of co-occurring mental health conditions, including depression and suicidality, which are frequently identified by stakeholders as treatment priorities. Unfortunately, accessing community-based mental health care is often difficult for autistic youth and their families. The first obstacle families confront is finding a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. The mental health and developmental disability systems are two of the most commonly accessed, and previous work has shown there is often confusion over which of these systems is responsible for providing mental health care to autistic individuals. In this study, we conducted a telephone survey to determine the availability of outpatient mental health services for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state's mental health and developmental disability systems. Results showed that while a greater percentage of clinics in the mental health system compared with in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), many more did not offer care to autistic youth and there were very few options overall. Therefore, it is important that changes to policy are made to increase the availability of services and that mental health care providers' knowledge and confidence in working with autistic youth are improved.

Leadership academy for excellence in disability services: evaluation of outcomes for state employees

As the United States’ first disability-specific leadership academy in state government, the Leadership Academy for Excellence in Disability Services is a year-long competency-based training experience designed for employees who manage programs that impact the lives of Tennesseans with intellectual and developmental disabilities and their families. The Tennessee Department of Human Resources, in collaboration with the Tennessee Council on Developmental Disabilities, began implementing this program in 2017. The lasting impact of such a training experience on the practices of state employees once they complete the program is not known; this was the aim of the study. A follow-up survey examining graduate perceptions and outcomes was sent to 71 graduates; 48 completed the measure. The results reveal an increase in knowledge of disability service systems and a perceived ability to lead and advocate for others. Leadership competencies deemed most important to graduates’ current efforts in state government included developing direct reports, managing diversity, organizational agility, and innovation management. Graduates’ written comments cited the variety of subject matter experts, networking opportunities, and small group projects as fundamental in breaking down barriers to cross-agency collaboration in their disability work. The impact of this experience continues to be seen years after completing the leadership academy.

Experience Design for Cognitive Education Based on the SAPAD-AHP Vocational Rehabilitation for Mental Retardation People

Reorganize community functional service modules, construct cognitive services for vocational rehabilitation of mental disorders in care institutions, and improve the level of cognitive vocational rehabilitation for people with disabilities. Integrating the SAPAD model and hierarchical analysis to design and research the process of supported employment for persons with mental disabilities, the study delves into user behaviour, completes the mapping of user's behaviour-object-meaning through the model framework, completes the mapping of meaning-object with core meaning clusters, finds the key behaviour of the user and uncovers the real needs of the user, thus systematically improving the service experience of the childcare institution. The AHP quantitative research method is used to find out the core needs of users and to think about and solve problems in a more objective and comprehensive way. In this way, the SAPAD model is refined and innovations are realised at the methodological level, and finally it is applied to the Mindfulness Supported Disability Service System to provide new ideas for improving the problem of supported employment for people with disabilities.

Identifying important persons in the promotion of positive behaviour support (PBS) in disability services: A social network analysis

ABSTRACT Background Little is known about networks for positive behaviour support (PBS) in disability services. This study explores a PBS network to identify influential persons in its promotion and communication. Methods Quantitative sociometric methods were used to identify persons who occupy positions of either boundary spanning (those that link people and groups) and/or opinion leadership (those that are sought for advice). Results Nineteen persons were identified. Boundary spanners met all criteria for the position while opinion leaders did not. Conclusions This is the first published study of a PBS network in disability services and provides insights into persons involved in its systemic promotion. Boundary spanners are effectively bridging the PBS network, yet persons seeking information about PBS are doing so from opinion leaders that do not display a requisite characteristic for this role. These results have implications for the wider utility of PBS within disability service systems.

ADA turns 31; Bazelon Center urges legislative support from Congress

The Americans with Disabilities Act (ADA) turned 31 July 26. It has made a tremendous impact on the lives of people with disabilities and has made it possible for thousands to live in their own homes and communities, the Bazelon Center for Mental Health Law recently noted. But segregation remains far too common in our disability service systems, the Bazelon Center said in a statement. “Congress has the opportunity to pass new legislation that would make an unprecedented new investment in home and community‐based services for people with disabilities,” legal advocates stated. “The Better Care Better Jobs Act, introduced in both the U.S. Senate and the House of Representatives, would create a permanent 10% increase in the federal government's reimbursement to states for Medicaid home and community‐based services. The bill reflects President Biden's commitment in his American Jobs Plan to direct $400 billion to new home and community‐based services. Community mental health systems suffered devastating effects from the COVID‐19 pandemic. Now is the time to invest in community mental health services and other community‐based services for people with disabilities.”

Value-Based Payments: Intellectual and Developmental Disabilities Quality Indicators Associated With Billing Expenditures.

Although managed care is expanding into the intellectual and developmental disabilities (IDD) service system, there is little agreement about measurable and meaningful outcomes for people with IDD, including for use in value-based payments (VBP). In this study, we examined potential VBP metrics for people with IDD-relationships between quality and costs. We analyzed Basic Assurances data and long-term services and supports billing data from 68 human service organizations that supported 6,608 people with IDD. Our final hierarchical regression model predicted 66.40% of the variance of annual long-term services and supports (LTSS) billing per person. Our findings suggest quality assurance indicators can account for a significant portion of cost variance-quality metrics represent a potential for cost savings and efficient service delivery.

A Community-Health System Intervention to Improve the Primary Healthcare of Adults With Down Syndrome Through Electronic Consultations.

Health systems often fail to tap the expertise of the developmental disabilities community support and service system. In this 9-month pilot health system-level quality improvement project, a multi-disciplinary team of physician, pharmacist, and disabilities advocate reviewed electronic records of patients with Down syndrome in advance of pre-scheduled appointments with their primary care physician (PCP) and generated 100 electronic consultations. Post-consultation chart review documented meaningful uptake of clinical recommendations, including screening for thyroid disease, celiac disease, and heart disease, pneumococcal vaccination, and screening physical examination for myelopathy. In addition to clinical recommendations regarding screening, diagnosis, and treatment, each consultation provided an average of eight tailored suggestions for potential community-based resources related to mental and behavioral health, recreation, socialization, and other relevant services and supports. "Push" multi-disciplinary electronic consultations in advance of primary care appointments enriched with input from disabilities community experts have the potential to improve the quality of health care provided to persons with developmental disabilities.

Mediating a Fragmented System: Partnership Experiences of Parents of Children with Neurodevelopmental and Neuromuscular Disabilities

The nature of relationships between service providers and parents of children with disabilities influences the health and wellbeing of parents and ultimately the quality of life of their children. The aim of this study was to explore parents’ perceptions of their partnerships with service providers. We explored what was and was not working within these service relationships and solicited ideas for improved partnerships and services. We employed a qualitative, participatory research approach and adapted the Reflexive Methodology of Analysis in Partnership developed by Boudreault and Kalubi (2006). Thematic analysis and critical interpretation of the statements created in two focus groups by eight parents of nine children with disabilities generated eight themes: system complexity; funding; communication; navigation and advocacy; education; segregation; emotional support; and connecting with parents. Parents described difficulties in mediating partnerships in an ineffective disability service system and proposed practical solutions to these problems. We suggest that the structure of the disability service system is the root of these problems and must be radically changed to realize true partnership and client-centered services. Implications from this study for policy and practice include transforming the structure of the system, streamlining the organization and location of service information and delivery, including parents on decision-making bodies, and creating spaces for mutual peer support for parents of children with disabilities.

Parents with intellectual disabilities in the child protection system

That parents with intellectual disabilities are noted to be involved with child protection systems at disproportionate rates is well documented. Drawing on national-level data from the United States' child protection system, this study examines the prevalence of substantiated child protection cases involving a parent with an intellectual disability as well as information about demographic characteristics, risk factors, child maltreatment types and services provided at the start of a child protection case. Cases involving parents with intellectual disabilities were more likely to involve psychological or emotional abuse, but not other types of abuse and neglect. Problematic disproportionalities in the provision of service types specific to identified risk factors were noted. Implications for casework in both the child protection and disability service systems are discussed.