Policy implications, eligibility and demographic characteristics of people with intellectual disability who have access to self-directed funding in the United States

This study identifies factors (state of residence, personal characteristics, and living situation) associated with access to self-directed funding (SDF) for adults with intellectual disability in the United States. Data from 10,033 participants from 26 states in the 2012–2013 National Core Indicators Adult Consumer Survey were analyzed. We examined state, age group, residence type, disability diagnoses, mental health status, and type of disability support funding used. Availability of SDF for people with ID varied by state and aligned mostly with state-by-state policy data on SDF eligibility and availability. The results of a logistic regression analysis demonstrated that access to SDF was lower in older adults and higher for people who lived in their parents' or relatives' home, an independent home, and with certain personal characteristics. Potential influences from policy and practice, and approaches to increase access to SDF are discussed

From mainstream employment to mainstream retirement : a randomised controlled trial of a transition to retirement intervention for adults with intellectual disability

Background: We evaluated a transition to retirement intervention that adapted strategies used to support employment of people with intellectual disability in mainstream workplaces. The intervention facilitated their independent participation in mainstream community groups and volunteering. Methods: We randomised 29 older Australians who currently/previously worked in mainstream employment into an intervention group or wait-list control group. Hours of independent participation in target activities were collected before and after the 13-week initial intervention/waiting period, and at 52 weeks for intervention participants. Results: Six of the 12 intervention participants selected an activity and increased hours of independent participation following 13 weeks in the Keeping Active (KA) program and eight were independently accessing their selected activity at 52-week follow-up. None of the 19 wait-list participants increased their independent participation after 13 weeks. Conclusions: The intervention was effective and highlighted the need to account for factors such as participant choice in evaluation of individualised programs

Appendix B: Forms

We assume that disability services already have established client information systems, so this Appendix contains only three forms. Each is directly related to the TTR program and to retirement planning. The forms are: 1. Retirement Lifestyle Planning form (first retirement planning meeting) 2. Retirement Lifestyle Planning form (for annual review meeting) 3. Right of return lette

The I-CAN : using e-Health to get people the support they need

Background: The I-CAN is a comprehensive, reliable and valid system of identifying and classifying support needs of people with disabilities based on the conceptual framework of the International Classification of Functioning, Disability and Health (ICF) [1] and the American Association on Intellectual and Developmental Disability (AAIDD) supports concept [2,3]. Originally developed for people with Developmental Disability, the I-CAN's application of internet technologies is currently being trialled in Mental Health, Rehabilitation Medicine and other disciplines. Conceptual underpinnings, research and implementation to date are summarized. Method: ICF based domains covering Health & Well Being and Activities & Participation have been refined over several versions. A total of 1012 individuals with disabilities across the eastern states of Australia were assessed using the first three versions, and 193 with the fourth versions. Studies investigated reliability, concurrent and predictive validity and user satisfaction. A fourth internet-based version has been implemented and is under continuing investigation and refinement. Results: The I-CAN instrument demonstrated good reliability and validity in studies to date. Domain scales effectively discriminated a range of intensities of support for people with various disabilities, with highest support needs generally recorded by individuals with multiple disabilities and ageing issues. Correlations between I-CAN and adaptive behaviour scales were mixed. The ICAN scales measure individual support needs. However, regression analysis suggests that staffing and other organizational factors play a significant role in resource allocation apart from individual support need. There was general satisfaction with the assessment process from stakeholders and participants groups. Several brief case examples shall be presented. Conclusions: The I-CAN provides a reliable and valid tool for assessing and reporting on the support needs of people with disabilities using a process that involves the person, their family, friends and staff as appropriate. Several possibilities exist for this unique tool and the application of the ICF framework to e-health

The Disability and Wellbeing Monitoring Framework:data, data gaps, and policy implications

Objective: To develop a framework and indicators to monitor inequalities in health and the social determinants of health for Australians with disability. Methods: The development drew on existing frameworks and input from people with lived experience of disability. Results: The Disability and Wellbeing Monitoring Framework has 19 domains. Australian national data are available for 73% of the 128 indicators in these domains. Data gaps and limitations include the absence of national data and the absence of disability identifiers in some data sources. Conclusions: The framework will be used to report baseline data for people with and without disability and to monitor inequalities over time in Australia. It will also be used to locate policy priorities and focus efforts to address data gaps. Implications for public health: Inequality between people with and without disability in relation to health and the social determinants of health is a public health issue that warrants greater attention than it has received to date. The framework provides a robust, evidence‐informed tool to address the health inequalities of people with disability, inform the development of effective policy and practice responses, and monitor change over time

The Wellbeing of Working-Age Adults with and without Disability in the UK : Associations with Age, Gender, Ethnicity, Partnership Status, Educational Attainment and Employment Status

Background Few population-based studies have examined the association between disability and personal wellbeing (PWB) among working-age adults. Objective/Hypothesis: To determine: (1) the magnitude of differences in wellbeing between working-age adults with and without disability in contemporary samples representative of the UK population; and (2) whether the size of any observed differences between people with and without disability is moderated by age, gender, ethnicity, partnership status, educational attainment or employment status. Methods Secondary analysis of data from three national cross-sectional surveys. Results In each survey, people with disability scored lower than people without disability on all four indicators of PWB. Adjusting for the main effects of potentially moderating variables reduced the effect size of disability on PWB by an average of 24%. Subsequently adjusting for the two-way interaction terms between disability and potentially moderating variables reduced the effect size of disability (main effect) on PWB by an additional average of 73%. PWB among people with disability was significantly lower for: (1) men; (2) younger people; (3) those who belong to the majority ethnic group (white British); (4) those without a partner; and (5) people with lower socio-economic position. Conclusions Our findings indicate that demographic characteristics and exposure to specific social determinants of poor health play a major role in the negative association between disability and personal wellbeing. A more sophisticated understanding of how social determinants interact to produce inequities associated with identities such as disability, gender, race, sexuality, and class (intersectionality) can inform effective policy interventions

Health and healthcare for people with disabilities in the UK during the COVID-19 pandemic

BACKGROUND: While emerging evidence shows increased mortality from COVID-19 among people with disability, evidence regarding whether there are disability-related inequalities in health during the pandemic is lacking. OBJECTIVE: This study compares access to COVID-19 and non-COVID-19 related health care and mental health of people with and without disability. METHODS: Longitudinal analysis of 12,703 adults (16-64 years) who participated in W9 (2017-2019) and the April and/or May COVID-19 special surveys of the UK Understanding Society study. Descriptive analyses and Poisson regression (adjusted for age, gender, ethnicity and financial stress) were conducted to estimate associations between disability (measured at Wave 9) and a number of different COVID-19-related health and health care outcomes (COVID-19 symptoms, testing and hospitalisation), mental health and loneliness, and non-COVID-19 related health care (e.g. outpatient and inpatient hospital care, prescription medications). RESULTS: Results from the fully-adjusted regression models found that people with disability were more likely: to be hospitalised if symptomatic (adjusted PRR 3.0 95% 1.07-8.43); to experience current symptoms of psychological distress (PRR 1.15, 95% CI 1.05-1.26) and to report being lonely (PRR 1.75, 95% CI 1.46-2.09) compared to non-disabled people. People with disability reported much higher levels of comorbidities than people without disability. However, inability to access health care and treatment were similar. CONCLUSIONS: As the UK opens up, it is important that health care services and social policy address the poor mental health and social isolation of people with disability so that the inequalities occurring early in the pandemic do not become further entrenched

Adding 6 months of androgen deprivation therapy to postoperative radiotherapy for prostate cancer: a comparison of short-course versus no androgen deprivation therapy in the RADICALS-HD randomised controlled trial

Background Previous evidence indicates that adjuvant, short-course androgen deprivation therapy (ADT) improves metastasis-free survival when given with primary radiotherapy for intermediate-risk and high-risk localised prostate cancer. However, the value of ADT with postoperative radiotherapy after radical prostatectomy is unclear. Methods RADICALS-HD was an international randomised controlled trial to test the efficacy of ADT used in combination with postoperative radiotherapy for prostate cancer. Key eligibility criteria were indication for radiotherapy after radical prostatectomy for prostate cancer, prostate-specific antigen less than 5 ng/mL, absence of metastatic disease, and written consent. Participants were randomly assigned (1:1) to radiotherapy alone (no ADT) or radiotherapy with 6 months of ADT (short-course ADT), using monthly subcutaneous gonadotropin-releasing hormone analogue injections, daily oral bicalutamide monotherapy 150 mg, or monthly subcutaneous degarelix. Randomisation was done centrally through minimisation with a random element, stratified by Gleason score, positive margins, radiotherapy timing, planned radiotherapy schedule, and planned type of ADT, in a computerised system. The allocated treatment was not masked. The primary outcome measure was metastasis-free survival, defined as distant metastasis arising from prostate cancer or death from any cause. Standard survival analysis methods were used, accounting for randomisation stratification factors. The trial had 80% power with two-sided α of 5% to detect an absolute increase in 10-year metastasis-free survival from 80% to 86% (hazard ratio [HR] 0·67). Analyses followed the intention-to-treat principle. The trial is registered with the ISRCTN registry, ISRCTN40814031, and ClinicalTrials.gov, NCT00541047. Findings Between Nov 22, 2007, and June 29, 2015, 1480 patients (median age 66 years [IQR 61–69]) were randomly assigned to receive no ADT (n=737) or short-course ADT (n=743) in addition to postoperative radiotherapy at 121 centres in Canada, Denmark, Ireland, and the UK. With a median follow-up of 9·0 years (IQR 7·1–10·1), metastasis-free survival events were reported for 268 participants (142 in the no ADT group and 126 in the short-course ADT group; HR 0·886 [95% CI 0·688–1·140], p=0·35). 10-year metastasis-free survival was 79·2% (95% CI 75·4–82·5) in the no ADT group and 80·4% (76·6–83·6) in the short-course ADT group. Toxicity of grade 3 or higher was reported for 121 (17%) of 737 participants in the no ADT group and 100 (14%) of 743 in the short-course ADT group (p=0·15), with no treatment-related deaths. Interpretation Metastatic disease is uncommon following postoperative bed radiotherapy after radical prostatectomy. Adding 6 months of ADT to this radiotherapy did not improve metastasis-free survival compared with no ADT. These findings do not support the use of short-course ADT with postoperative radiotherapy in this patient population

Duration of androgen deprivation therapy with postoperative radiotherapy for prostate cancer: a comparison of long-course versus short-course androgen deprivation therapy in the RADICALS-HD randomised trial

Background Previous evidence supports androgen deprivation therapy (ADT) with primary radiotherapy as initial treatment for intermediate-risk and high-risk localised prostate cancer. However, the use and optimal duration of ADT with postoperative radiotherapy after radical prostatectomy remains uncertain. Methods RADICALS-HD was a randomised controlled trial of ADT duration within the RADICALS protocol. Here, we report on the comparison of short-course versus long-course ADT. Key eligibility criteria were indication for radiotherapy after previous radical prostatectomy for prostate cancer, prostate-specific antigen less than 5 ng/mL, absence of metastatic disease, and written consent. Participants were randomly assigned (1:1) to add 6 months of ADT (short-course ADT) or 24 months of ADT (long-course ADT) to radiotherapy, using subcutaneous gonadotrophin-releasing hormone analogue (monthly in the short-course ADT group and 3-monthly in the long-course ADT group), daily oral bicalutamide monotherapy 150 mg, or monthly subcutaneous degarelix. Randomisation was done centrally through minimisation with a random element, stratified by Gleason score, positive margins, radiotherapy timing, planned radiotherapy schedule, and planned type of ADT, in a computerised system. The allocated treatment was not masked. The primary outcome measure was metastasis-free survival, defined as metastasis arising from prostate cancer or death from any cause. The comparison had more than 80% power with two-sided α of 5% to detect an absolute increase in 10-year metastasis-free survival from 75% to 81% (hazard ratio [HR] 0·72). Standard time-to-event analyses were used. Analyses followed intention-to-treat principle. The trial is registered with the ISRCTN registry, ISRCTN40814031, and ClinicalTrials.gov , NCT00541047 . Findings Between Jan 30, 2008, and July 7, 2015, 1523 patients (median age 65 years, IQR 60–69) were randomly assigned to receive short-course ADT (n=761) or long-course ADT (n=762) in addition to postoperative radiotherapy at 138 centres in Canada, Denmark, Ireland, and the UK. With a median follow-up of 8·9 years (7·0–10·0), 313 metastasis-free survival events were reported overall (174 in the short-course ADT group and 139 in the long-course ADT group; HR 0·773 [95% CI 0·612–0·975]; p=0·029). 10-year metastasis-free survival was 71·9% (95% CI 67·6–75·7) in the short-course ADT group and 78·1% (74·2–81·5) in the long-course ADT group. Toxicity of grade 3 or higher was reported for 105 (14%) of 753 participants in the short-course ADT group and 142 (19%) of 757 participants in the long-course ADT group (p=0·025), with no treatment-related deaths. Interpretation Compared with adding 6 months of ADT, adding 24 months of ADT improved metastasis-free survival in people receiving postoperative radiotherapy. For individuals who can accept the additional duration of adverse effects, long-course ADT should be offered with postoperative radiotherapy. Funding Cancer Research UK, UK Research and Innovation (formerly Medical Research Council), and Canadian Cancer Society