ABSTRACT

Self-direction allows people with intellectual and developmental disabilities (IDD) to control and direct their services and supports. This study's aim was to examine how states across the United States implemented self-direction in their Medicaid Home- and Community-Based Services (HCBS) 1915(c) waiver programs for people with IDD in fiscal year (FY) 2021. We found 80% of states offered self-direction in their HCBS programs. Across the United States, the goal was to have 13% people with IDD receiving HCBS self-direct (n = 113 692). We found, in FY 2021, 29% of services could be self-directed and 36% of funding was projected for services eligible for self-direction. There were vast differences in how self-direction was implemented across states. For example, among the states that allowed self-direction, goals for self-direction by state ranged from 0.9% to 47.5% of people with IDD receiving HCBS. Moreover, projected spending for services eligible for self-direction varied by state from 0.1% to 100%. We believe everyone that wants to self-direct should have the opportunity to do so.

Journal of Policy and Practice in Intellectual Disabilities, Volume 22, Issue 1, March 2025.

ABSTRACT

People with profound intellectual and multiple disabilities can be excluded from research and relatively little is known about the experiences of people with profound intellectual and multiple disabilities and their carers during COVID-19. This paper aims to further explore the impact on this group via information provided by paid and family carers. It focuses on key areas such as access to social and health services in addition to questions about health and well-being. In contextualising these results, some comparisons are made to impacts on other groups. This paper also explores what we might do better in future to support this population. Carers were invited to complete an online survey about their experiences and the experiences of people they supported during COVID-19 and to suggest what might have made life better. They were invited to complete this survey at four time points (waves) between December 2020 and December 2022. This paper reports on Waves 1–3, that is to August 2022. Services for people with profound intellectual and multiple disabilities reduced during COVID-19 and have yet to return to pre-pandemic levels. People with profound intellectual and multiple disabilities were reported to experience increased social isolation, deteriorating mental and physical health, increased behavioural signs of distress and reduced life skills. Three areas were identified regarding what would have made life better: opportunities for social contact and activities; improved access to health and social care services, and; consistent and responsive staff. Results are explored in the context of current challenges in service provision, including staff retention and shifts in staff culture during the pandemic.

Abstract

To counteract stigma and discrimination a series of five lessons Talk about Learning Disability (Talk-LD) to promote young people's understanding and acceptance of people with intellectual disabilities were developed for the Scottish secondary school curriculum. This study examined the feasibility of carrying out a randomised control trial comparing the delivery of the lessons alone with the lessons plus an attempt to promote positive contact between participating students and people with intellectual disabilities. The aim was to recruit and randomise 12 schools to receive the lessons alone or the lessons plus contact. The Attitudes Towards Intellectual Disability (ATTID) questionnaire was completed at baseline and a questionnaire about students' understanding of the lesson content was completed at follow-up alone. Twelve schools were recruited and randomised. The lessons were delivered to 23 classes across the 12 schools. Baseline data were obtained for 480 participants. However, school closures due to COVID-19 meant that follow-up data were only obtained from 220 students (six schools) prior to school closures. The attitude measure only detected change in one ATTID scale, indicating students may be more willing to interact with a person with intellectual disabilities post intervention. Three of the six schools randomised to the lessons plus contact group had plans in place for joint activities between students and young people with an intellectual disability. Despite the disruption caused by the Covid pandemic, the findings were encouraging in relation to future research on the Talk-LD lessons. The schools also engaged positively with the process of promoting positive contact with young people with an intellectual disability.

Abstract

Current complex life conditions and changing developmental contexts draw attention to the concept of capabilities, the various combinations of functions a person can do or can be, and the opportunities to achieve them. A future-oriented time perspective is a dimension along which individuals express meaning-making of experiences and expectations regarding their lives, a benchmark for the well-being and satisfaction of the quality of life they experience. Findings from research studies involving adults with disabilities and family members of persons with a disability provide evidence for a time-based model, an approach tapping into both the concept and measurement of quality of life and balancing both current and expected quality of life.

Abstract

Background

Adults with intellectual and developmental disabilities (IDDs) have higher healthcare needs, but experience difficulties accessing preventative healthcare. Despite this inequity, models of care that address barriers and provide customized treatment are limited, exacerbating vulnerabilities and poorer health outcomes. This study describes the development of a procedural model of care (PMOC) for adults with intellectual and developmental disabilities, and evaluates the sedation tier, exploring procedure and sedation outcomes.

Methods

Development of the PMOC was informed by current evidence and themes identified in stakeholder consultation and literature. A retrospective cohort study evaluated the sedation option within the model, conducted at a community-based disability service in Melbourne, Australia. All records over a 14-month period were included. Descriptive statistics and univariate logistic regression analysis were used to analyze data.

Results

The PMOC includes assessment, intervention, and evaluation tiers. Intervention options range from least to most invasive, culminating in the sedation level (mild; oral psychoactive, moderate; midazolam and nitrous oxide, high; general anesthetic). A total of 127 adults with IDDs received procedures under sedation; median age was 26 years, 61% lived with family, and 81% had multiple disabilities. A total of 197 procedures were referred to CDDH, including immunization (61%) and oral health reviews (23%), and resulted in 98% completion rate. Mild (n = 36) and moderate (n = 95) sedation were used for 67% of procedures. The PMOC correctly predicted 91% of sedation requirements. Living with family (OR 2.211, 95% CI 1.001–4.885, p = 0.05); immunization (OR 7.935, 95% CI 4.025–15.644, p <0.001); and multiple disabilities (OR 3.064, 95% CI 1.123–8.362, p = 0.029) were associated with mild, moderate and high sedation options, respectively.

Conclusions

Models of care offering individualized interventions can support adults with IDDs to receive preventative procedures. Demographic variables may be able to predict sedation requirements. Wider application of this model may reduce health inequity within this vulnerable population.

Abstract

Due to economic and technological progress, life expectancy is constantly developing, thus the European senior generation is ever-increasing. Such demographic modifications have far reached consequences on social protection systems and society. Specifically, the last 20 years have also seen a significant increase in life expectancy for people with disabilities and their elderly parents who care for them. Therefore, this contribution provides an overview of the quality of life for adults with intellectual disabilities and their elderly parents. Specifically, this paper examines the notion of quality of life, especially in its relationship with sustainability, inclusion, and social justice. Lastly, it examines the contextual factors that contribute to promoting or hindering the quality of life of individuals with intellectual disabilities and the impact on social inclusion, sustainability, and social justice.

Abstract

Specialized medical equipment, includes both durable medical equipment—nondisposable, reusable medical equipment—and nondurable medical equipment—disposable, often one time use medical supplies. The aim of this study was to examine if, and how, states allocated specialized medical equipment for people with IDD in their Medicaid HCBS programs. To do so, we examined Medicaid HCBS 1915(c) waivers for people with IDD from across the United States. We found 55 waivers (51.40%) from 27 states (60.00%) provided 71 specialized medical equipment services to people with IDD. HCBS waivers projected spending $61 million on specialized medical equipment for 33 305 people with IDD. The average annual spending per person was $2433. In addition to helping promote community living and integration, for some people with IDD, specialized medical equipment can be life sustaining; as such, it is critical that unmet needs for specialized medical equipment not go unaddressed.

Journal of Policy and Practice in Intellectual Disabilities, Volume 21, Issue 4, December 2024.