Dr Sullivan is Associate Professor in the Department of Family and Community Medicine at the University of Toronto in Ontario, a staff physician in Medical Services at Surrey Place Centre and the Family Practice Unit at St Michael’s Hospital, and Director of the Developmental Disabilities Primary Care Program at Surrey Place Centre. Dr Diepstra is a research associate at Surrey Place Centre. Mr Heng is Assistant Professor in the Department of Philosophy and the Department of Interdisciplinary Studies at King’s University College in London, Ont. Ms Ally is an advanced practice nurse at Surrey Place Centre, Adjunct Lecturer in the Lawrence S. Bloomberg Faculty of Nursing at the University of Toronto, and an MBA candidate. Dr Bradley is Associate Professor in the Department of Psychiatry at the University of Toronto and a consult- ing psychiatrist and psychotherapist in intellectual disabilities. Dr Casson is Associate Professor in the Department of Family Medicine at Queen’s University in Kingston, Ont. Dr Hennen is Professor Emeritus at Western University in London and Dalhousie University in Halifax, NS. Ms Kelly is a retired nurse from Toronto. Ms Korossy is a retired librarian from Surrey Place Centre in Toronto. Dr McNeil is Assistant Professor in the Department of Family Medicine at Dalhousie University. Dr Abells is a family physician at Forest Hill Family Health Centre in Toronto and the Integrated Services for Autism and Neurodevelopmental Disorders, and Lecturer in the Department of Family and Community Medicine at the University of Toronto. Dr Amaria is a clinical and health psychologist and team lead for the Good 2 Go Transition Program at the Hospital for Sick Children in Toronto. Dr Boyd is Associate Clinical Professor in the Department of Psychiatry and Behavioural Neurosciences at McMaster University in Hamilton, Ont, and Chief Clinical Officer for Bethesda Community Services in Thorold, Ont. Dr Gemmill is Assistant Professor in the Department of Family Medicine at Queen’s University. Dr Grier is Assistant Professor in the Department of Family Medicine at Queen’s University. Dr Kennie-Kaulbach is University Teaching Fellow and a coordinator in the Skills Lab in the College of Pharmacy at Dalhousie University. Ms Ketchell is a behaviour analyst and Professor in the School of Social and Community Services at Humber Institute of Technology and Advanced Learning in Toronto. Dr Ladouceur is Adjunct Professor in the Belleville Queen’s University Family Medicine Centre. Dr Lepp is a resident in the Discipline of Family Medicine at McMaster University. Dr Lunsky is Senior Scientist at the Centre for Addiction and Mental
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A final challenge was finding creative and functional solutions to barriers in communication and coordination that occurred across different sectors. Special measures had to be taken to share information across separate “circles of care” and differences in case management (social service sector) versus care planning (health ser- vice sector) needed to be aligned to foster coordination. An essential next focus is moving toward models that are integrated, not just collaborative, where different professionals share a common knowledge base (in this case factors that lead patients with IDD to become high- cost users) and goals (patient- or client-centred care approach to optimizing community-based health and social services).
Recruitment of participants took place between March 2013 and February 2014 and finished when the target sam- ple size was reached. A multi-point strategy recruited par- ticipants from day centres for adults with intellectual disabilities, community provider organisations that employ- ing paid carers and specialist intellectual disabilities health and social care services. Many adults with intellectual dis- abilities have frequent contact with other adults with intel- lectual disabilities such that there was felt to be a risk of participants in the intervention and control groups discuss- ing the Walk Well programme, sharing resources or being influenced to change behaviours through direct contact. To minimise contamination of control group outcomes a clus- ter randomised design was used with participants rando- mised as part of a cluster if they attended the same day centre, lived in shared tenancies, or lived in different houses but were supported by the same paid carers.
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It is important to include IDD-specific education in the family medicine residency curriculum because of the unique health needs of people with IDD. Such a teaching program for fam- ily medicine residents provides education not only about people with IDD but also about responsive, person-centred practices. We hope the methods and resources discussed in this paper can act as a guide for Canadian family medicine programs to integrate such training into their curricula. Dr Casson is Associate Professor in the Department of Family Medicine at Queen’s University in Kingston, Ont. Dr Abells is a family physician at Forest Hills Family Health Centre and the Integrated Services for Autism and Neurodevelopmental Disorders, and Lecturer in the Department of Family and Community Medicine at
This study was supported by a Partnerships in Health Systems Improvement grant from the Canadian Institutes of Health Research using data provided by the Ontario Ministry of Health and Long-Term Care (MOHLTC), the Ontario Ministry of Community and Social Services, and ICES; ICES is supported in part by the MOHLTC. The opinions, results, and conclusions reported in this paper are those of the authors and are independent of the funding sources. No endorsement by Health Quality Ontario, ICES, or the MOHLTC is intended or should be inferred. Parts of this material are based on data and information compiled and provided by the Canadian Institute for Health Information and Cancer Care Ontario (CCO). However, the analyses, conclusions, opin- ions, and statements expressed herein are those of the authors, and not necessarily
Primary care physicians can provide and coordinate appro- priate care for patients with IDD facing the health challenges associated with aging and dying. Being aware of baseline cognitive abilities and decision-making skills, as well as changes in cognitive abilities associated with aging and complexity of illness, will help outline appropriate treatment and coordinate care plans with patients, family members, appropriate agency services, and other health care profes- sionals. Interventions will reflect the wishes of the patient or the person providing substitute consent. In addition, use of available community support will ensure the best possible care for these complex patients at the end of life.
This study was supported by a Partnerships in Health Systems Improvement grant from the Canadian Institutes of Health Research using data provided by the Ontario Ministry of Health and Long-Term Care (MOHLTC), the Ontario Ministry of Community and Social Services, and the Institute for Clinical Evaluative Sciences (ICES), and ICES is supported in part by the MOHLTC. The opinions, results, and conclusions reported in this paper are those of the authors and are independent of the funding sources. No endorsement by Health Quality Ontario, ICES, or the MOHLTC is intended or should be inferred. Parts of this material are based on data and information compiled and provided by the Canadian Institute for Health Information and Cancer Care Ontario (CCO). However, the analyses, conclusions, opinions, and statements expressed herein are those of the authors, and not necessarily those of the Canadian Institute for Health Information or CCO. No endorsement by CCO is intended or should be inferred. Ms Smith was supported by the Canadian Institutes of Health Research through a Fredrick Banting and Charles Best Canada Graduate Scholarship–Master’s and by Queen’s University in Kingston, Ont. Dr Green is supported by the CTAQ Chair in Applied Health Policy/Health Economics at Queen’s University. We thank Marlo Whitehead for her assistance with data analysis.
We thank the research assistants—Sora Abdul-Fattah and Préscillia Dupont—who tran- scribed the audiotaped interviews. We also thank the research assistants—Alexandra Finstad and Natasha Plourde—who contributed to data collection. This study was supported by a Partnerships in Health Systems Improvement grant from the Canadian Institutes of Health Research and is part of the Health Care Access Research and Developmental Disabilities program. We thank the Ministry of Community and Social Services for making this study possible by sending the information package to recipients of the Ontario Disability Support Program. The opinions, results, and conclusions reported in this paper are those of the authors and are independent from the funding sources. No endorsement by the Ministry of Community and Social Services is intended or should be inferred.
communications requires a collaborative approach involving the patient and the patient’s team. The HELP framework is a simple, easy-to-remember, systematic review of the broad causes of behaviour: Health prob- lems (including medications), Environments and sup- ports, Lived experiences, and Psychiatric conditions. In most cases, assessment of a psychiatric diagnosis is best pursued once issues in the other areas have been addressed. Using the appropriate health provider and caregiver tools will also enhance successful inter- vention for BTC. When a clear psychiatric diagnosis exists, treatment with psychotropic medications might be indicated, along with other diagnosis-specific treat- ments such as psychological therapies. Antipsychotic medication is sometimes used to manage BTC in an acute crisis. In this context, the patient response should be reevaluated in 72 hours, as efforts to identify the causes of the BTC continue so that appropriate treat- ment can be initiated. The interprofessional team is essential to successful, comprehensive intervention for BTC. Family physicians will need to advocate on their patients’ behalf to help access those disciplines that are a necessary part of their equitable health care. Dr Green is a family physician practising at St Michael’s Hospital in Toronto, Ont, and Lecturer at the University of Toronto. Dr McNeil is a family physician at Dalhousie Family Medicine in Halifax, NS, and Assistant Professor in the Department of Family Medicine at Dalhousie University. Ms Korossy is a retired librarian from Surrey Place Centre in Toronto. Dr Boyd is a psychiatrist and Associate Clinical Professor in the Department of Psychiatry and Behavioural Neurosciences at McMaster University in Hamilton, Ont, and Chief Clinical Officer for Bethesda Community Service in Thorold, Ont. Dr Grier is a fam- ily physician, Senior Advisor for Developmental Disabilities, and Assistant Professor in the Department of Family
Adults with IDs are a unique patient group. In this study, they have described how their family physicians have approached interactions with them in helpful ways. In particular, helping patients understand infor- mation during physician-patient interactions and help- ing patients navigate the health care system were key aspects of this process. Strategies to support family physicians to engage in helpful approaches, including education and further research, are needed given the increasing number of community-dwelling adults with IDs in our aging population.
It has been reported that quality of life has both subjective and objective components. While the subjective component is frequently referred to ei- ther “well-being” or “life satisfaction”, the objective component includes as- pects of living conditions and social functioning such as accommodation, employment, leisure and finance. Quality of life for the mental health of people with intellectual disabilities has been identified as a comprehen- sive indicator of intervention efficacy. Research into the life quality of life during the lifespan of disabled peo- ple has followed the same historical trends as for the general population. The earliest “life quality” data were derived from measures of objective living standards. These results were used to demonstrate the lower ob- jective life quality of people living in institutions compared with presumed
A clinic-based study conducted by Tyler et al. (2011) used a case control design to study adults with ASD receiving primary care at Cleveland Clinic between 2005 and 2008. They found high rates of obesity, hyperlipidemia and hypertension among this population, which put them at higher risk for diabetes, cancer, and cardiovascular disease than the general adult population (Tyler, Schramm, Karafa, Tang, & Jain, 2011). Dixon-Ibarra and Horner Johnson used data from the National Health Interview Survey (2006-2012) to determine to what extent disability is a risk factor for poor health. They compared chronic conditions in adults with lifelong disabilities and adults with no limitations. Their study reported that adults with lifelong disabilities had increased odds of having the following chronic conditions: coronary heart disease, cancer, hypertension, obesity and diabetes, compared to adults with no limitations. Thus they recommended health promotion efforts to target people with disabilities in preventing chronic conditions, especially since they are at a higher risk than the general population (Dixon, 2014).
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The study has its major implication in the field of Vocational Rehabilitation research. The review of literature given in this study shows that both field of early intervention services and Vocational Rehabilitation Services have great potentialities for further research. According to Meadow-Orlans and Sass Lehrer (1995) quoted that, the type of Service delivery that is gathered information from listening to parents as the key stakeholders in decision making for their child, has proven benefits. There is a strong relationship between families that feel, professionals that listen to them and feelings of self- efficacy. This has implications for more positive interactions between parent and child, boosting confidence for both. The findings of the study can be used as a source of information to special schools, integrated schools, inclusive schools, Hospitals and care centers, vocational counselor as well as rehabilitation institutions. In addition, the information from the present study will give guidance/ directions to the management and administration, to focus more on specific vocational areas and environment that will get positive and qualitative results.
Disorders 5th ed. (DSM-5), an intellectual disability is defined as “deficits in intellectual functions, such as reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience; deficits in adaptive functioning that result in failure to meet developmental and sociocultural standards for personal independence and social responsibility; and onset of intellectual and adaptive deficits during the developmental period” (American Psychiatric Association, 2013). Within the limited research available, most of the studies examining the time use of adults with ID have focused on specific occupational categories such as leisure (Buttimer & Tierney, 2005; Zijlstra & Vlaskamp, 2005) and physical fitness (Messent, Cooke, & Long, 1999; Temple, Anderson, & Walkley, 2000).
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participants that they were expected to maintain a solely occupational relationship within their roles: “We were supposed to distance ourselves but you can’t. If you did, well you couldn’t really care could you? You’re too involved with people to be distant. I’m human … I can’t hide behind a professional mask.” (S9, p.225). Although participants felt that this was incongruous with their caring role, this expectation left them reluctant to seek support from managers for their grieving for fear of negative evaluation: “You are expected to draw a line around it. To be professional. To have no emotions or feelings … to have a stiff upper lip.” (S9, p.225).
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Further research is thus required for several reasons. First, obtaining accurate prevalence rates of psychotropic drug use has been problematic given many existing studies have focused on small, highly selective convenience samples with a lack of population wide estimates (Sheehan et al. 2015). The number of population-based studies is small with participants recruited predominantly from primary care. Second, there has been variation in results due to a lack of standardised medication rating systems, preventing comparisons between studies. For example, some researchers have included antiepileptics for epilepsy as psychotropic medications (Holden & Gitlesen, 2004; Henderson et al. 2015), whereas other researchers have classed them as somatic medication (Scheifes et al. 2013; Doan et al. 2014).Third,
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ated by a committee that included researchers and family physicians. The committee identified constructs that should change with training; the constructs were translated into questions that were categorized into 5 key measures that address specific objectives of the continuing education course curriculum. The 5 key measures included questions on frequency of use of the Guidelines and Tools Book, frequency of perform- ing periodic health examinations, frequency of per- forming assessments of patients who present with behaviour changes, level of comfort while caring for adults with DD, and knowledge of primary care related to adults with DD (Table 1). Reliability analysis indi- cated high internal consistency of the questions within each of the key measures (Chronbach α range .78 to .89). The survey also included questions on study par- ticipants’ demographic characteristics (age, sex, pro- fession, urban or rural practice) (Table 2). The survey was pilot-tested with 4 physicians and revised based on feedback. A copy of the “Survey of Practice Patterns, Behaviours, Comfort Level and Knowledge” is available from the authors upon request.
Dr McNeil is Assistant Professor in the Department of Family Medicine at Dalhousie University in Halifax, NS. Dr Gemmill is Assistant Professor in the Department of Family Medicine at Queen’s University in Kingston, Ont. Dr Abells is a family physician at Forest Hill Family Health Centre in Toronto, Ont, and the Integrated Services for Autism and Neurodevelopmental Disorders, and Lecturer in the Department of Family and Community Medicine at the University of Toronto. Dr Sacks is Clinical Faculty Lecturer in the Department of Family Medicine at McGill University in Montreal, Que, and a fam- ily physician at the See Things My Way Centre for Innovation in Autism and Intellectual Disabilities. Ms Broda is an advanced practice nurse at the See Things My Way Centre and a faculty member of the Ingram School of Nursing at McGill University. Dr Morris is Assistant Professor in the Department of Family Medicine at McMaster University in Hamilton, Ont. Dr Forster-Gibson is Assistant Professor in the Department of Laboratory Medicine and Pathobiology at the University of Toronto.
adjustments for people with intellectual disabilities. The broad conclusion is that around a half of commissioners were unable to answer these apparently simple questions. The questions were not new. They had been asked in identical form in the same exercise a year earlier and it was widely anticipated that this would be repeated. Findings of the previous exercise had been widely
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De Vreese LP, Gomiero T, Uberti M, De Bastiani E, Weger E, Mantesso U, Marangoni A. Functional abilities and cognitive decline in adult and aging intellectual disabilities Psychometric validation of an Italian version of the Alzheimer’s Functional Assessment Tool (AFAST): Analysis of its clinical significance with linear statistics and artificial neural networks. Journal of Intellectual Disability Research. 2015;59(4): 370‐384.
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