Tailored vs. General COVID-19 prevention for adults with mental disabilities residing in group homes: a randomized controlled effectiveness-implementation trial.

BACKGROUND: People with serious mental illness (SMI) and people with intellectual disabilities/developmental disabilities (ID/DD) are at higher risk for COVID-19 and more severe outcomes. We compare a tailored versus general best practice COVID-19 prevention program in group homes (GHs) for people with SMI or ID/DD in Massachusetts (MA). METHODS: A hybrid effectiveness-implementation cluster randomized control trial compared a four-component implementation strategy (Tailored Best Practices: TBP) to dissemination of standard prevention guidelines (General Best-Practices: GBP) in GHs across six MA behavioral health agencies. GBP consisted of standard best practices for preventing COVID-19. TBP included GBP plus four components including: (1) trusted-messenger peer testimonials on benefits of vaccination; (2) motivational interviewing; (3) interactive education on preventive practices; and (4) fidelity feedback dashboards for GHs. Primary implementation outcomes were full COVID-19 vaccination rates (baseline: 1/1/2021-3/31/2021) and fidelity scores (baseline: 5/1/21-7/30/21), at 3-month intervals to 15-month follow-up until October 2022. The primary effectiveness outcome was COVID-19 infection (baseline: 1/1/2021-3/31/2021), measured every 3 months to 15-month follow-up. Cumulative incidence of vaccinations were estimated using Kaplan-Meier curves. Cox frailty models evaluate differences in vaccination uptake and secondary outcomes. Linear mixed models (LMMs) and Poisson generalized linear mixed models (GLMMs) were used to evaluate differences in fidelity scores and incidence of COVID-19 infections. RESULTS: GHs (n=415) were randomized to TBP (n=208) and GBP (n=207) including 3,836 residents (1,041 ID/DD; 2,795 SMI) and 5,538 staff. No differences were found in fidelity scores or COVID-19 incidence rates between TBP and GBP, however TBP had greater acceptability, appropriateness, and feasibility. No overall differences in vaccination rates were found between TBP and GBP. However, among unvaccinated group home residents with mental disabilities, non-White residents achieved full vaccination status at double the rate for TBP (28.6%) compared to GBP (14.4%) at 15 months. Additionally, the impact of TBP on vaccine uptake was over two-times greater for non-White residents compared to non-Hispanic White residents (ratio of HR for TBP between non-White and non-Hispanic White: 2.28, p = 0.03). CONCLUSION: Tailored COVID-19 prevention strategies are beneficial as a feasible and acceptable implementation strategy with the potential to reduce disparities in vaccine acceptance among the subgroup of non-White individuals with mental disabilities. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04726371, 27/01/2021. https://clinicaltrials.gov/study/NCT04726371 .

Value-Based Payment to Support Health Care Transition for Young Adults with Intellectual and Developmental Disabilities: A Feasibility Study.

INTRODUCTION: Only 20% of youth with intellectual and developmental disability (ID/DD) receive health care transition (HCT) preparation from their health care providers (HCPs). To address HCT system gaps, the first-of-its-kind HCT value-based payment (VBP) pilot was conducted for young adults (YA) with ID/DD. METHODS: This feasibility study examined the acceptability, implementation, and potential for expansion of the pilot, which was conducted within a specialty Medicaid managed care organization (HSCSN) in Washington, DC. With local pediatric and adult HCPs, the HCT intervention included a final pediatric visit, medical summary, joint HCT visit, and initial adult visit. The VBP was a mix of fee-for-service and pay-for-performance incentives. Feasibility was assessed via YA feedback surveys and interviews with HSCSN, participating HCPs, and selected state Medicaid officials. RESULTS: Regarding acceptability, HSCSN and HCPs found the HCT intervention represented a more organized approach and addressed an unmet need. YA with ID/DD and caregivers reported high satisfaction. Regarding implementation, nine YA with ID/DD participated. Benefits were reported in patient engagement, exchange of health information, and care management and financial support. Challenges included care management support needs, previous patient gaps in care, and scheduling difficulties. Regarding expansion, HSCSN and HCPs agreed that having streamlined care management support, medical summary preparation, and payment for HCT services are critical. DISCUSSION: This study examined the benefits and challenges of a HCT VBP approach and considerations for future expansion, including payer/HCP collaboration, HCT care management support, and updated system technology and interoperability.

The inequity of education, health and care plan provision for children and young people with intellectual and developmental disabilities.

BACKGROUND: Children and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK's National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family's socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being. METHODS: We recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6-28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education's National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15-16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child's emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child's IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated. RESULTS: In this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regardless of their IMD decile; those in the least deprived decile had almost 100% EHCP provision. CONCLUSIONS: This study found evidence for nationwide regional inconsistencies in the awarding of EHCP to CYP with significant intellectual impairments of known genetic aetiology. Disparities in funds available to education authorities could be a contributory factor. EHCP support was potentially influenced by how strongly a parent advocates for their child.

Trainee advocacy for medical education on the care of people with intellectual and/or developmental disabilities: a sequential mixed methods analysis.

BACKGROUND: Medical trainees (medical students, residents, and fellows) are playing an active role in the development of new curricular initiatives; however, examinations of their advocacy efforts are rarely reported. The purpose of this study was to understand the experiences of trainees advocating for improved medical education on the care of people with intellectual and/or developmental disabilities. METHODS: In 2022-23, the authors conducted an explanatory, sequential, mixed methods study using a constructivist paradigm to analyze the experiences of trainee advocates. They used descriptive statistics to analyze quantitative data collected through surveys. Participant interviews then yielded qualitative data that they examined using team-based deductive and inductive thematic analysis. The authors applied Kern's six-step approach to curriculum development as a framework for analyzing and reporting results. RESULTS: A total of 24 participants completed the surveys, of whom 12 volunteered to be interviewed. Most survey participants were medical students who reported successful advocacy efforts despite administrative challenges. Several themes were identified that mapped to Steps 2, 4, and 5 of the Kern framework: "Utilizing Trainee Feedback" related to Needs Assessment of Targeted Learners (Kern Step 2); "Inclusion" related to Educational Strategies (Kern Step 4); and "Obstacles", "Catalysts", and "Sustainability" related to Curriculum Implementation (Kern Step 5). CONCLUSIONS: Trainee advocates are influencing the development and implementation of medical education related to the care of people with intellectual and/or developmental disabilities. Their successes are influenced by engaged mentors, patient partners, and receptive institutions and their experiences provide a novel insight into the process of trainee-driven curriculum advocacy.

Measuring palliative care self-efficacy of intellectual and developmental disability staff using Rasch models.

OBJECTIVES: The objectives of this study were to evaluate the psychometric properties of a palliative care self-efficacy instrument developed for intellectual and developmental disability (IDD) staff using Rasch analysis and assess the change in palliative care self-efficacy between 2 time points using Rasch analysis of stacked data. METHODS: Staff from 4 nonprofit IDD services organizations in a US Midwestern state (n = 98) answered 11 questions with Likert-style responses at baseline and 1-month follow-up post training. Rasch analysis was performed to examine rating scale structure, unidimensionality, local independence, overall model fit, person and item reliability and separation, targeting, individual item and personal fit, differential item functioning (DIF), and change in palliative care self-efficacy between 2 time points. RESULTS: The rating scale structure improved when 5 response categories were collapsed to 3. With the revised 3 response categories, the instrument demonstrated good psychometric properties. Principal components analysis of Rasch residuals supported the assumption of unidimensionality. Model fit statistics indicated an excellent fit of the data to the Rasch model. The instrument demonstrated good person and item reliability and separation. Gender-related DIF was found in 1 item, and work tenure-related DIF in 3 items. Overall palliative care self-efficacy improved between 2 time points. SIGNIFICANCE OF RESULTS: Rasch analysis allowed for a more thorough examination of this palliative care self-efficacy instrument than classical test theory and provided information on rating scale structure, targeting, DIF, and individual persons and items. These recommendations can improve this instrument for research and practical contexts.

Frequency of Hebrew word usage by children with intellectual and developmental disabilities: implications for AAC core vocabulary.

Appropriate vocabulary selection for augmentative and alternative communication (AAC) intervention is crucial to support communication and language development in children with intellectual and developmental disabilities (IDD). Core vocabulary lists are commonly used to guide this process, and there is a need for language-specific consideration. This paper aimed to develop a wordlist for selecting the core vocabulary for AAC intervention for young Hebrew-speaking children with IDD. Five children (age 3;5-8;4) were audio-recorded in naturalistic interactions with an interviewer and family members. Using Levy's clinical corpus in the Child Language Data Exchange System (CHILDES) and Child Phonology Analyzer (CPA) tools and preestablished codes, wordlists with usage frequencies were extracted and coded for lexeme, lexical categories and functions or content. The percentages of the 20, 50, 100, and 200 most frequent lexemes were calculated for each child and for the five children combined. The top 200 most frequently used lexemes constituted 85% of the composite lexicon. A comparison was made between this study list and a previous list derived from language samples of typically developing (TD). Lexemes representing function words dominated, albeit with a slight preference for content words in children with IDD. Among the content words, children with IDD used more adverbs, while children with TD used more verbs. Implications for AAC core vocabulary are discussed.

Perceived Impact of the COVID-19 Pandemic on Adults with Intellectual and Developmental Disability: A Qualitative Study.

The current study examined the impact that the COVID-19 pandemic and resulting restrictions have had on individuals with intellectual and developmental disability. Semi-structured focus groups were conducted to collect data from participants who attended day programming by local community agency. Results indicate that the COVID-19 pandemic and its safety restrictions impacted participants' knowledge of the disease, programming and work, relationships, activities, and emotions in ways that were both similar to and different from other findings in other populations. Implications of these findings for research and practice are discussed.

Post-COVID-19 condition risk in patients with intellectual and developmental disabilities: a retrospective cohort study involving 36,308 patients.

BACKGROUND: To date, no studies have investigated the prevalence of post-COVID-19 conditions in patients with Intellectual and Developmental Disabilities (IDD). Addressing this research gap is crucial, as understanding post-COVID-19 conditions in IDD patients can improve care planning, and it is essential not to overlook this vulnerable population in COVID-19 studies. This study was aimed at investigating the prevalence of post-COVID-19 conditions in patients with IDD and compare their risk with that of the general population. METHODS: Using the TriNetX network, we identified patients with and without an IDD who had COVID-19. Subsequently, we compared the risk of developing any post-COVID-19 condition between these two groups, during the 90-180-day follow-up after SARS-CoV-2 infection. RESULTS: During the follow-up, patients with an IDD exhibited a significantly higher prevalence of post-COVID-19 conditions compared to the general population (hazard ratio [HR], 1.120; 95% confidence interval [CI]: 1.053-1.191). Specifically, COVID-19 survivors with IDD had a significantly increased risk of experiencing abnormal breathing (HR, 1.216; 95% CI: 1.077-1.373), abdominal symptoms (HR, 1.259; 95% CI: 1.128-1.406), fatigue (HR, 1.397; 95% CI: 1.216-1.606), anxiety/depression (HR, 1.157; 95% CI: 1.050-1.274), cognitive symptoms (HR, 1.828; 95% CI: 1.529-2.186), myalgia (HR, 1.325; 95% CI: 1.077-1.631), sleep disturbances (HR, 1.481; 95% CI: 1.148-1.910), and cough (HR, 1.315; 95% CI: 1.146-1.508) compared to the non-IDD group. CONCLUSIONS: Patients with IDD might be associated with a higher risk of post-COVID-19 conditions following SARS-CoV-2 infection compared to the general population.

Expanding the phenotypic and biochemical spectrum of NDUFAF3-related mitochondrial disease.

Recessive variants in NDUFAF3 are a known cause of complex I (CI)-related mitochondrial disorders (MDs). The seven patients reported to date exhibited severe neurologic symptoms and lactic acidosis, followed by a fatal course and death during infancy in most cases. We present a 10-year-old patient with a neurodevelopmental disorder, progressive exercise intolerance, dystonia, basal ganglia abnormalities, and elevated lactate concentration in blood. Trio-exome sequencing revealed compound-heterozygosity for a pathogenic splice-site and a likely pathogenic missense variant in NDUFAF3. Spectrophotometric analysis of fibroblast-derived mitochondria demonstrated a relatively mild reduction of CI activity. Complexome analyses revealed severely reduced NDUFAF3 as well as CI in patient fibroblasts. Accumulation of early sub-assemblies of the membrane arm of CI associated with mitochondrial complex I intermediate assembly (MCIA) complex was observed. The most striking additional findings were both the unusual occurrence of free monomeric CI holding MCIA and other assembly factors. Here we discuss our patient in context of genotype, phenotype and metabolite data from previously reported NDUFAF3 cases. With the atypical presentation of our patient, we provide further insight into the phenotypic spectrum of NDUFAF3-related MDs. Complexome analysis in our patient confirms the previously defined role of NDUFAF3 within CI biogenesis, yet adds new aspects regarding the correct timing of both the association of soluble and membrane arm modules and CI-maturation as well as respiratory supercomplex formation.

A systematic review of intellectual and developmental disability curriculum in international pre-graduate health professional education.

BACKGROUND: Despite the increasing global population of individuals with intellectual and developmental disabilities (IDD), this population remains especially vulnerable to health disparities through several factors such as a lack of access to sufficient medical care and poor determinants of health. To add, numerous studies have shown that healthcare professionals are still insufficiently prepared to support this population of patients. This review synthesizes the literature on current pre-graduate IDD training programs across healthcare professions with the goal of informing the creation of evidence-based curricula. METHODS: Four major databases were searched for current pre-graduate IDD training interventions for healthcare professionals. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow diagram and the Best Evidence Medical Educations systematic review guide were used to frame our collection and analysis. RESULTS: Of the 8601 studies screened, 32 studies were identified, with most studies involving medical students (50%). Of note, 35% of studies were interprofessional. Most interventions utilized multiple pedagogical methods with a majority including clinical experiences (63%) followed by theoretical teaching (59%). Kirkpatrick levels showed 9% were level 0, 6% were level 1, 31% were level 2A, 31% were level 2B, 19% were level 3, 3% were level 4A, and none were level 4B. CONCLUSIONS: There is a paucity of formally evaluated studies in pre-graduate health professional IDD education. As well, there are a lack of longitudinal learning opportunities and integration into formal curriculum. Strengths identified were the use of multimodal approaches to teaching, including interprofessional approaches to optimize team competencies.

[The situation of people with intellectual and developmental disabilities in the COVID-19 pandemic-risk factors, problem areas, and measures]. / Die Situation von Menschen mit geistiger Behinderung in der COVID-19-Pandemie ­ Risikofaktoren, Problembereiche, Maßnahmen.

Many people with intellectual and developmental disabilities (IDD) were much more affected by COVID-19 than the average population. The morbidity in this population group was significantly higher due to the form of their housing and care as well as disability-associated health factors (such as Down's syndrome). This led, among other things, to a higher incidence of inpatient settings, a higher mortality rate among hospitalized patients, and a higher case fatality rate among certain subgroups. Risk factors were co-diseases such as dysphagia, epilepsy, or mental disorders. In addition, there were health consequences from restrictive exposure prophylaxis measures at the beginning of the COVID-19 pandemic.This overview article describes the main developments in the care of people with IDD since the beginning of the pandemic. New mental problems or an increase in existing mental problems occurred more frequently in people with IDD who were cared for on an outpatient basis or by relatives. People with IDD in inpatient residential facilities were less frequently affected. The main reasons for psychological problems were lack of social contacts, lost work and employment opportunities, the frightening pandemic situation, and the major structural and personnel changes in the facilities at the beginning of the pandemic. During the pandemic, there were also problems with the implementation of therapeutic and preventive measures. On the other hand, especially in the inpatient area, the "slowing down of life" associated with the restrictions at the beginning of the pandemic also had a stress-reducing effect on some of the people with IDD and was perceived by them as something positive. Caregivers had more time for the genuine (i.e., pedagogical) work. Overall, it was shown that health-promoting measures must also take into account the great heterogeneity of the people with IDD and their living conditions during the pandemic.

Facilitators of Sense of Belonging Among People With Intellectual and Developmental Disabilities: A Systematic Review.

Background: This review synthesizes the available literature regarding factors which facilitate a sense of belonging in people with intellectual and developmental disabilities, and provide a comprehensive integrative view of the subject. Methods: Four electronic databases were searched, and 13 studies met inclusion criteria for review. The "standard quality assessment criteria for evaluating primary research papers from a variety of fields" indicated satisfactory quality. Factors which facilitate a sense of belonging in people with intellectual and developmental disabilities were analyzed into themes. Results: Sense of belonging is enhanced by feeling respected, accepted, and valued (Subjectivity). These experiences are more likely to be achieved in a familiar and safe environment (Dynamism), and with access to platforms for social interactions (Groundedness), where a sense of relatedness and connectedness achieved by shared experiences with others (Reciprocity). Sense of belonging is associated with committed action of people with disability, taking assertive action or being agentic (Self-determination). Conclusion: Sense of belonging is a unique concept that should be addressed in disability research and practice.

Linked nosocomial COVID-19 outbreak in three facilities for people with intellectual and developmental disabilities due to SARS-CoV-2 variant B.1.1.519 with spike mutation T478K in the Netherlands.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) living in congregated settings have increased risk of COVID-19 infection and mortality. Little is known about variant B.1.1.519 with spike mutation T478K, dominant in Mexico. We describe a linked SARS-CoV-2 B.1.1.519 outbreak in three IDD facilities in the Netherlands. METHODS: Following notification of the index, subsequent cases were identified through serial PCR group testing. Positive specimens were submitted for whole-genome-sequencing. Clinical information was gathered through interviews with staff members of the three facilities. RESULTS: Attack rate (AR) in clients of the index facility was 92% (23/25), total AR in clients 45% (33/73) and in staff members 24% (8/34). 55% (18/33) of client cases were asymptomatic, versus 25% (2/8) of staff members. Five client cases (15%) were hospitalized, two died (6%). Sequencing yielded the same specific B.1.1.519 genotype in all three facilities. No significant difference in median viral load was established comparing the B.1.1.519 variant with other circulating variants. The index of the linked outbreak reported no travel history or link to suspected or confirmed cases suggesting regional surveillance. Observed peak regional prevalence of B.1.1.519 during the outbreak supports this. CONCLUSION: AR, morbidity and mortality prior to control measures taking effect were high, probably related to the specific characteristics of the IDD setting and its clients. We assessed no evidence for intrinsic contributing properties of variant B.1.1.519. Our study argues for enhanced infection prevention protocols in the IDD setting, and prioritization of this group for vaccination against COVID-19.

Employment preferences of individuals with intellectual and developmental disabilities: An evaluation of gender and age differences.

BACKGROUND: Employment is often central to individuals' lives. However, individuals with intellectual or developmental disabilities are often absent from the workplace, and little research has examined their interest in working. AIMS: This study examined whether people with intellectual and/or developmental disabilities want jobs; why they do or do not want jobs; and, if they want to work, what types of jobs they would like to have. MATERIALS AND METHODS: Our analyses consisted of 629 participants (379 male, 248 female, 2 unspecified) who participated in an interview. RESULTS: Results suggested that many individuals with intellectual or developmental disabilities want jobs. Our study identified gender differences in vocational interests and motivation for employment. There were no significant differences between age groups. DISCUSSION AND CONCLUSION: In the future, research could expand upon these findings by exploring how various factors, such as other social identities, affect vocational interests of individuals with intellectual or developmental disabilities.

Supervisory and administrative staff's perspectives of self-directed supports for people with intellectual and developmental disabilities.

BACKGROUND: Self-directed supports (SDS) are a model of disability service delivery that focuses on supporting increased decision-making authority and budget autonomy for people with disabilities and their families. This study identifies supervisory and administrative staff's perspectives within a self-directed, individualised budgeting programme for people with intellectual and developmental disabilities. METHOD: Data were collected through 28 face-to-face interviews with supervisory and fiscal administrative staff in Minnesota, USA. RESULTS: A qualitative analysis of these interviews resulted in four major themes: (1) the benefits of SDS, (2) the relationship between SDS and person-centred strategies, (3) the perception that a natural tension arises when balancing person-centred approaches with the need for consistent and fair state policy-including rules and regulations within state systems and (4) the unique challenges related to SDS benefits and challenges occurring across Minnesota. CONCLUSIONS: The results indicate the importance of providing effective communication and training to all stakeholders.

Witnessing Quality of Life of Persons with Profound Intellectual and Multiple Disabilities. A practical-Philosophical Approach.

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these 'others' are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers' knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers' experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made.

Complete physical examinations in Manitoba adults with an intellectual or developmental disability: A retrospective cohort study.

BACKGROUND: Complete physical examinations (CPE) can identify health disparities in persons with intellectual or developmental disabilities. The objective of this study was to determine and compare rates of CPE among Manitoba adults with and without intellectual or developmental disabilities over time and to identify factors that were associated with receiving a CPE. METHOD: A retrospective cohort study using linked administrative health and non-health data from 1995 to 2015 was conducted. Poisson and logistic regression were used to calculate CPE rates and examine factors associated with CPE. RESULTS: The rates of CPE are decreasing over time and are higher among Manitobans with an intellectual or developmental disability. Characteristics such as being male, living rurally, low socioeconomic status, and high continuity of care led to lower odds of receiving a CPE. CONCLUSIONS: The current state of CPE provision to adults with intellectual or developmental disabilities in Manitoba is encouraging but needs improvement.

Caregiver resource utilization: Intellectual and development disability and dementia.

BACKGROUND: Adults with intellectual and developmental disabilities and their families have high need for support services. This study assessed resource utilization among caregivers of intellectual and developmental disabilities and other conditions. METHODS: We assessed 366 caregivers of adults with intellectual and developmental disabilities, dementia or other conditions Regressions assessed group differences in number of agency contacts and frequency of service use. A secondary analysis assessed reasons for underutilization of services. RESULTS: Caregivers of individuals with dementia contacted twice as many agencies as other caregivers and were more likely to report using suggested services. Agency contact and service utilization were similar among caregivers of adults with intellectual and developmental disabilities compared to other caregivers. Caregivers of adults with intellectual and developmental indicated that suggested services were unavailable to them. CONCLUSION: The findings of this study shed light on challenges with access to and utilization of support services.

Psychometric properties of a brief self-reported health-related quality of life measure (HRQoL-IDD) for persons with intellectual and developmental disabilities.

BACKGROUND: To encourage self-determination and address health disparities among persons with intellectual and developmental disabilities, clinicians and researchers rely on self-reported measures like health-related quality of life (HRQoL). This study evaluated the psychometric properties of a theory-driven self-reported HRQoL measure for adults requiring mild to moderate support related to intellectual and developmental disabilities. METHOD: 224 volunteers completed 42 quality of life items developed with extensive input from persons with intellectual and developmental disabilities, family members/caregivers, and providers. The 5-point Likert scale format with visual images of fluid-filled cups represented the range of responses. RESULTS: Exploratory and Unrestricted Factor Analyses yielded 16 HRQoL items with 4 subscales: Functional Well-Being, Emotional Well-Being, Social Well-Being, and Healthy Decision-making. The HRQoL-IDD explained 62.8% of variance, had satisfactory internal consistency (0.73-0.83), stability of reponses, and reading level (2nd grade, ages 7-8). CONCLUSIONS: The HRQoL-IDD is a promising measure of self-reported HRQoL for use in community-based settings for persons requiring mild to moderate support related to intellectual and developmental disabilities.

Transition-of-care planning: Preparing for the future care of the individual with intellectual and developmental disabilities.

Individuals with an intellectual and developmental disability (IDD) are often harmed when faced with changes in their living or care circumstances. Their inability to make sudden quality of life choices puts them at a disadvantage due to cognitive and communication difficulties. A quality improvement project was conducted with adult habilitation agency clients with IDD. Use of evidence-based methods, team collaborative communication, patient safety guidelines, and adherence to agency mission and policies were instrumental in development of a transition-of-care plan form given to clients on admission or during scheduled manager visits. A follow-up survey resulted in significant quantitative data results showing the importance of future planning to the client and guardian.