Inclusion and Education

Characteristics and Needs of People With Intellectual Disability Who Have Higher IQs

This article describes the use of in-house funding, private contracts, and a mixture of the two for applications in public transit operations. Three transit agencies are presented as examples: SunLine Transit (Thousand Palms, California), Foothill Transit (Los Angeles County), and Phoenix Public Transport (Phoenix, Arizona). Private contracts are often less expensive due to cost-savings measures on the part of the private entity. One such example involves paying employees less money on an hourly wage than is possible within a public organization. In addition, organizations avoid paying for outsourced Social Security, Medical, unemployment, and workers' compensation for these contracts. Lastly, private contracts cut down on slow bureaucratic processes that hinder public organization. However, using in-house employees has advantages such as greater control over quality of service. In the case of a combined public and private operation, the author notes that, due to the potential for maximized efficiency, cost per ride rates are among the lowest for peers. Likewise, the agency is afforded some of the control of public employees while gaining the efficiencies of private.

This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

To evaluate outcomes after major surgery in children and adolescents with intellectual disability. We used 2004 to 2013 claims data from Taiwan's National Health Insurance programme to conduct a nested cohort study, which included 220292 surgical patients aged 6 to 17years. A propensity score matching procedure was used to select 2173 children with intellectual disability and 21730 children without intellectual disability for comparison. Logistic regression was used to calculate the adjusted odds ratios (ORs) and 95% confidence intervals (CIs) of the postoperative complications and 30-day mortality associated with intellectual disability. Children with intellectual disability had a higher risk of postoperative pneumonia (OR 2.16, 95% CI 1.48-3.15; p<0.001), sepsis (OR 1.67, 95% CI 1.28-2.18; p<0.001), and 30-day mortality (OR 2.04, 95% CI 1.05-3.93; p=0.013) compared with children without intellectual disability. Children with intellectual disability also had longer lengths of hospital stay (p<0.001) and higher medical expenditure (p<0.001) when compared with children with no intellectual disability. Children with intellectual disability experienced more complications and higher 30-day mortality after surgery when compared with children without intellectual disability. There is an urgent need to revise the protocols for the perioperative care of this specific population. Surgical patients with intellectual disability are at increased risk of postoperative pneumonia, sepsis, and 30-day mortality. Intellectual disability is associated with higher medical expenditure and increased length of stay in hospital after surgical procedures. The influence of intellectual disability on postoperative outcomes is consistent in both sexes and those aged 10 to 17 years. Low income and a history of fractures significantly impacts postoperative adverse events for patients with intellectual disability.

Shields and Taylor1 make an important contribution to the literature on health care providers' attitudes toward people with disability. Research on attitudes toward people with disability, and particularly those with intellectual disability, is less common in rehabilitation professions (e.g., physical therapy, occupational therapy, speech language pathology) than in professions such as nursing and medicine. Addressing this gap, Shields and Taylor1 investigated whether contact with people with Down syndrome influenced attitudes toward disability among Australian physiotherapy students. Their findings have implications for how physiotherapy programmes can better prepare future graduates to work with people with disability. Intellectual disability is defined as “a disability that is characterized by significant limitations both in intellectual functioning and in adaptive behaviour, and originates before the age of 18”;2 it is almost always present in people with Down syndrome. In developed countries, an estimated 1% of the population has an intellectual disability.3 In Canada, people with intellectual disability have been moving from institutions to the community since the 1970s; surprisingly, this process is still not complete.4 While de-institutionalization has unquestionably improved quality of life for people with intellectual disability, they continue to have poorer health outcomes than the general population.5 One possible explanation for this is that their sometimes complex health care needs must now be addressed by community-based health care providers, who may not feel adequately prepared to work with them; this problem is accentuated when health care providers lack previous contact with this population.5 Shields and Taylor's findings1 confirm those of Vermeltfoort and colleagues,6 who found that while almost all the physiotherapy students they surveyed were willing to work with people with intellectual disability, only 50% felt well prepared to do so. Encouragingly, Shields and Taylor's randomized trial (a design not used often enough in studying the effectiveness of interventions in this population7) also shows that contact with people with Down syndrome in community settings leads to increased levels of comfort and confidence in working with people with disability.1 In Ontario, however, only half of physiotherapy students have opportunities to interact with people with intellectual disability during their training.6 This is a gap that physiotherapy programmes need to address. Physiotherapy students should graduate feeling confident in their ability to work with people with intellectual and other types of lifelong disabilities, and they should appreciate our profession's role in treating them throughout their lives. Shields and Taylor1 cite evidence that employers have highlighted a lack of disability experience among physiotherapy graduates.8 It is troubling to note that in a profession that purports to rehabilitate “injury and the effects of disease or disability,”9(p.2) graduates do not feel confident in their ability to work with people with lifelong disability. People with intellectual and other lifelong disabilities already encounter enough barriers to accessing health care that meets their needs; rehabilitation professionals who feel uncomfortable or have negative attitudes should not be one of them. Addressing this issue may become even more important in the future, as physiotherapists will increasingly come into contact with people with intellectual disability. The prevalence of comorbidities is high among people with intellectual disability, and a growing proportion of this population is experiencing the same age-related health concerns as the general population. They are likely to require additional health care services, including those provided by physiotherapists. One example is fall-prevention services and post-fracture care: a recently published atlas of primary care for people with intellectual disability showed very high levels of low-trauma fractures (i.e., fractures from low-impact events such as falls) across all age groups.10 A key point is Shields and Taylor's assertion that “service learning pedagogy has been under-used in physiotherapy education.”1 They also note that “alternative service learning experiences would complement rather than replace traditional clinical learning experiences.”1 Their study demonstrates that attitudes toward disability can change in a relatively short time;1 a potentially ideal opportunity for physiotherapy students to gain experience with this population, therefore, is through participation in FUNfitness events organized by Special Olympics.11 Physiotherapy students have shown that they are willing to work with people with intellectual disability and that their attitudes can improve through contact with this population; therefore, physiotherapy programmes should seek out and encourage service learning opportunities.

It has been 8 years since the American Journal on Intellectual and Developmental Disabilities (AJIDD) published a landmark two-issue series on the aging (volume 109, numbers 2 and 5). The first issue was edited by Marsha Mailick Seltzer. The confluence of aging with Down syndrome and Alzheimer’s disease was a major catalyst to prompt concern and ignite gerontological interest in this field. Thus, not surprisingly, the preponderance of articles was on topics including risk factors and screening and assessment of dementia in individuals with intellectual disability (ID) with or without Down syndrome. There were also several articles regarding the physical fitness and nutritional status of aging individuals with Down syndrome. The second issue, edited by Tamar Heller, specifically focused on family and service system supports. Prominent themes were caregiver issues, service provision, and service utilization for older adults. The challenges of the increasing population of older adults with intellectual and developmental disability (IDD) require continued description, investigation, advocacy, and intervention. In our call for submissions, we stated, ‘‘There is still a pressing need for further research to delineate physical and mental health concerns associated with aging and the end of life. There is also a great need to study the applicability of aging with IDD in broader contexts.’’ This special issue indeed meets this undertaking by including three empirical research articles regarding (a) prevalence and risk factors associated with falls, (b) chronicity of health conditions compared with the general population, and (c) satisfaction of caregivers with self-directed support models. Three articles review and discuss the present literature with respect to (a) aging individuals with autism spectrum disorders, (b) the transition to retirement and maintenance of meaningful activities on older adulthood, and (c) challenges related to provision of hospice services at the end of life. This issue is more eclectic than the prior published ones pertaining to aging. While each of the articles in this issue poses information on distinct topics, they all are timely and interrelated in their presentation of relevant issues affecting the daily lives of many older adults with IDD. The consequences of sustaining a fall-related injury, along with the complexity of recovery in older adults is a problematic, if not life-threatening, reality to many aging adults with IDD. Knowledge and mitigation of risk factors are key to providing safer settings and avoidance of major injuries. Hsieh, Rimmer, and Heller’s article, ‘‘Prevalence of Falls and Risk Factors in Adults with Intellectual Disability’’ examined data from the Longitudinal Health and Intellectual Disability Study. They report that almost a quarter of the sample had experienced a fall within the last 12 months and that the prevalence increased with increasing age. Risk factors included having arthritis, a seizure disorder, and difficulty lifting/carrying greater than 10 lb; taking more than four medications; using walking aids; and being female. Issues related to health disparities for underrepresented groups, including those with IDD, affect services access and provision as well as health outcomes. Morin, Merineau-Cote, OuelletteKuntz, Tasse, and Kerr’s article, titled ‘‘A Comparison of the Prevalence of Chronic Disease Among People with and Without Intellectual Disability,’’ documents disparity in the rates of certain chronic disease in people with ID compared to the general population. They report that individuals with ID had higher rates of thyroid disorder and heart disease. However, the prevalence of arthritis, migraines, back pain, and food allergies was lower in people with ID compared with the general population. The authors express concern that the lower prevalence might reflect reduced identification and diagnosis of these conditions, because of the need for subjective reports of discomfort for the conditions that were associated with pain. The prevalence of diabetes and asthma did not differ significantly; these conditions have less subjective diagnostic parameters used for assessment and treatment. Family support often comprises a blend of informal and formal caregivers that may change over time. Heller, Arnold, van Heuman, McBride, AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

To collect data on refractive errors and visual impairment in adults with an intellectual disability (ID) in the Netherlands. A randomized sample of 2100 participants was drawn from a base population of 9000 adults with intellectual disabilities in the Netherlands. This article reports on the first 900 participants. All participants underwent a protocol-based on-site ophthalmological assessment carried out by skilled investigators. Co-operation was classified according to the number of tests that could be carried out reliably and was good or excellent in 80% of subjects, average in 13% and poor in 7%. Refraction could be reliably assessed in 505/900 (56%) subjects. There was an increased risk of visual impairment in all subgroups compared to the general Dutch population. Visual acuity (VA) was related to the level of ID, but refractive errors were not. New spectacles were prescribed in 106 cases (12%). Of 374 people in whom both monocular VA and the refractive error of the right eye could be reliably assessed, 153 (41%) had a pretest prescription, 16 (10%) of which we found to be inadequate. Of the 221 participants without a pretest prescription, 41 (19%) benefited from correction. Only 38/84 (45%) subjects aged 50 years or older, who could benefit from correction for near vision, had near spectacles. New correction increased the mean distant VA significantly from 0.44 to 0.65 (p < 0.0005). With some adaptations, visual screening is feasible in a majority of adults with ID. Visual impairment and refractive errors are much more prevalent in adults with ID than in the normal population. Accurate spectacle correction resulted in significant improvement in distant VA.

Disability, Hospital Care, and Cost: Utilization of Emergency and Inpatient Care by a Cohort of Children with Intellectual and Developmental Disabilities

AimsTo provide an overview of the Royal Australian and New Zealand College of Psychiatrists’ (RANZCP) work to improve support for those with an intellectual or developmental disability.MethodsPeople with intellectual disability experience significantly higher rates of physical and mental health conditions in comparison to the general population. However, there can be multiple barriers to effective health care including, but not limited to, stigma and discrimination, the training of health professionals and a failure to consider the specific needs of people with intellectual disability in health and disability policy leading to deficits in funding to support generic services or develop specialist service models.In Australia, a Disability Royal Commission was established in 2019 in response to community concern about reports of violence against, and the neglect, abuse and exploitation of, people with disability. The RANZCP has provided information to the Royal Commission and appeared at a public hearing focused on the education and training of health professionals in relation to people with cognitive disability. In 2022, the RANZCP published new position statements on autism and intellectual disability to address the unmet needs faced by people with autism and intellectual disability and provide a foundation for future College advocacy for improving resourcing and mental health support for these groups.ResultsThe new RANZCP position statements on autism and intellectual disability make a number of systemic recommendations to address the mental health needs of autistic people and intellectual disability including:providing adequate funding to ensure appropriate policy implementationeducating and training health providers in the mental health needs of autistic people and people with intellectual disabilityincluding the voices of autistic people to support a more inclusive approach to policy development and service designcollecting data on the needs of people with intellectual disability who are living with mental health conditions to support better service planning and better health outcomes.In response to recommendations from the Disability Royal Commission, the RANZCP is also revising its training syllabus to include additional requirements for cognitive disability and has reviewed its CPD program to determine whether CPD for the provision of health care to people with intellectual disability should be enhanced.ConclusionThe RANZCP is committed to addressing the unmet mental health needs and significant challenges of people with autism and intellectual disability and advocating for improving resourcing and mental health support for these groups.

To establish the prevalence and incidence of type 1 and type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities. We conducted separate searches of multiple databases (EMBASE, CINAHL, MEDLINE, PsycINFO, SCOPUS, Web of Science, PUBMED and Cochrane Library) to find relevant articles. A total of 13 studies were identified: 13 addressed the prevalence of diabetes in people with intellectual and developmental disability, three addressed the impact of diabetes on their health and well-being and three addressed the management of diabetes. The prevalence of diabetes in people with intellectual and developmental disability remains uncertain, and the incidence of diabetes in this group of people is unknown. There is some evidence to support the assertion that people with intellectual and developmental disability might be at greater risk of diabetes than the general population. Overall, the quality of the evidence on which to base prevention and management strategies is variable. There is a paucity of research focusing on the prevalence, incidence and impact of diabetes among people with intellectual and developmental disability. Further research is needed to inform policy and practice in this area and, in particular, work is needed to develop methodologies, evaluation tools, educational resources and diabetes care support services appropriate to the needs of people with intellectual and developmental disability.

SS5.04: Physical aspects of aging in persons with intellectual disability (ID)

Standardized patients (SPs), now a mainstay of the undergraduate medical education experience, are beginning to play larger roles in helping students build competencies to better serve patients who have disabilities, in educating students about the lived experiences of persons with disabilities, and in testing students' understanding of disability-related issues. In this article, the authors discuss several U.S. training programs that involve SPs who have disabilities or SPs who do not have disabilities but who portray patients who do. The authors review the goals of each program (e.g., to provide students with opportunities to gain experience with patients with disabilities), describe their commonalities (enhancing students' interview skills) and differences (some programs are educational; some are evaluative), and summarize the evaluative data of each. The authors also explore the benefits and challenges of working with SPs with disabilities and of working with SPs without disabilities. Finally, they consider the practical issues (e.g., recruiting SPs) of developing and implementing such programs.

People with an intellectual disability (ID) have more complex and different patterns of health care needs than the general population. They experience a greater burden of multi-morbidity, high levels of undetected and unmanaged health issues, and premature mortality than the general population. Primary care has a key role in the health care of people with an ID. Currently, very little is known about the consultation type and length, problems managed, and how general practitioners (GPs) manage these problems for people with an ID compared with the general population. This information would provide valuable insights into how GPs are achieving the health guidelines and facilitating people with an ID to achieve the highest attainable standard of health. A secondary analysis of data was collected from January 2003 to December 2012 from the Bettering the Evaluation and Care of Health (BEACH) programme. Consultation type, consultation length in minutes, problem(s) managed during the consultation, medications, treatments provided, and referrals made, pre and post age-sex standardisation, at all GP encounters with people identified in the encounter record as having an ID ('ID' encounters, n=690) were compared with those at 'non-ID' encounters (n=970641). Statistical significance was tested with 95% confidence intervals. This study identified significant differences in consultation types, consultation length, problem(s) managed during the consultation, medications, treatments provided, and referrals made at 'ID' encounters compared with 'non-ID' encounters. 'ID' encounters had more indirect encounters, longer consultations, more problems managed, but an under management of common health conditions in people with an ID. Administrative rather than medically related actions dominated clinical treatments for people at 'ID' encounters, and they received fewer procedural treatments, referrals to specialists, and medications compared with those at 'non-ID' encounters. The significant differences in consultations, problems identified and managed suggest that GPs may require additional support to (1) identify and manage common medical conditions experienced by people with an ID; (2) manage the increased time required for consultations; and (3) directly consult with people with an ID. Further research is required to determine why GPs managed problems in a significantly different way for people with an ID.

Research on individuals with intellectual and developmental disabilities continues to be an underinvestigated area of medicine. Even after the Surgeon General’s report (Office of the Surgeon General, 2002) emphasizing the need to develop specific, achievable goals to improve the quality of life of people with intellectual and developmental disabilities, there is insufficient research with these individuals. Now more than ever, it is imperative that adequate research efforts be focused on the population of individuals with intellectual and developmental disabilities in order to better understand and define their specific needs, and, ultimately, to improve their quality of life. With the evolution of modern medicine and the introduction of novel medical concepts and treatments, these individuals are living longer (McCausland et al., 2010), but they continue to face clear challenges in maintaining good health because they have poor health status compared to individuals in the general population (Lennox, Beange, & Edwards, 2000). Researchers have shown that the needs of this population differ significantly from those of the general population and that they are at an increased risk of developing comorbidities. However, their specific needs have not been well-defined (Parish, Moss, & Richman, 2008). To date, few large epidemiological studies have been conducted to assess the prevalence of specific medical conditions in individuals with intellectual and developmental disabilities (Beange, McElduff, & Baker, 1995). Furthermore, only 14% of individuals with intellectual and developmental disabilities currently live in public or private institutions (Smith, Lakin, Larson, & Salmi, 2011), making community-based research increasingly important.

All people have a right to equal healthcare without discrimination on the basis of disabilities. In practice, however, health inequalities still remain. Ideally we would define future public health having sufficient attention to minority groups and their specific needs. One of these groups is people with intellectual disabilities (ID), defined by severe limitations in adaptive and functional behaviour. As a result of these limitations, people with ID suffer from worse health, higher hospitalisation rates and higher premature mortality compared to people without ID. In reducing these health inequalities acquiring accurate information on disease epidemiology in people with ID compared to those without ID is crucial. However, this crucial information is still lacking. This workshop will dive into disease epidemiology in people with ID by highlighting different aspects of health and the difficulties that arise when researching people with ID. First, It has been proven difficult to identify ID in existing data sources. ID-diagnoses in medical records are not too reliable, physicians do not always recognise IDs, or people are embarrassed of their ID-diagnosis. By gaining information on received services or supports specifically for people with ID a more complete representation of the ID-population is gained. Second, prevalence rates on chronic diseases in people with ID are often inconsistent across the literature, probably due to different age and sex patterns of chronic diseases and chronic comorbidities compared to people without ID, but these patterns are often not taken into account. By reporting on chronic disease prevalence and comorbidity patterns in people with versus without ID, a novel insight is gained in comparative epidemiology of chronic diseases of people with and without ID. Third, although it is known that people with mild ID suffer more mental health disorders dan people with no ID, exact prevalence rates and data on the care provided to these people in mental health services is missing. A retrospect database study performed in Dutch mental health care gives insight in this knowledge gap, not only for those people whom are recorded with their mild ID in these mental health services, but also for those people who were not recorded as such. Fourth, the current pandemic of a novel infectious disease stresses the strong need for accurate knowledge of disease epidemiology, particularly concerning high-risk groups such as people with ID. A large-scale registration of COVID-19 in people with ID living in residential settings was developed in the Netherlands, to provide necessary insight in the medical impact of COVID-19 among people with ID and inform policy makers and care providers on specific risks and consequences of COVID-19 in the ID population as compared with the general population.Key messages Insight in disease epidemiology and disease care in people with intellectual disabilities compared to people without intellectual disabilities is crucial in reducing health inequalities.Although it is difficult to identify all people with intellectual disabilities in data sources, using multiple methods and data sources results in a more complete overview of this group of people.