The Power of Partnerships to Identify and Address Mental Health Concerns Experienced by Adults With Intellectual and Developmental Disabilities
1
Citation
17
Reference
10
Related Paper
Citation Trend
Abstract:
Abstract There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships.Keywords:
Pandemic
The way that society sees people with intellectual disability has changed over times. Individuals with intellectual disability have been described using many terms over the centuries and decades. It is important to think about the values that underpin these terms and changes, as these same values also inform the services that support people with intellectual disability and influence how professionals provide support. Those people we call intellectual disability is a disability characterized by significant limitations in both intellectual functioning and conceptual, social, and practical adaptive skills. In actuality, whom we call people with intellectual disability and where we draw the line between people with intellectual disability and the normal depends upon our understanding and the purpose of our classification. Without a clear and universally accepted definition of intellectual disability, efforts to understand its nature and improve the lives of persons with intellectual disability will be impossible. Therefore, the purpose of this paper was to examine the theory and identification of intellectual disability, to explore the limitations of the current system of classification, and to make clear understanding of intellectual disability to the health care professionals. The article found that there are many essential assumptions to the application of the stated definition of intellectual disability; for the useful definition and the essential features of intellectual disability it must be clearly communicated to both professionals and the general public.
Borderline intellectual functioning
Identification
Cite
Citations (7)
To identify, on a population basis, the prevalence of intellectual disability in children with Dravet syndrome, profiles on a measure of adaptive behaviour, and factors associated with intellectual functioning and adaptive behaviour.Forty-two out of 48 children with Dravet syndrome living in Sweden, born between 1st January 2000 and 31st December 2018, underwent assessment of intellectual functioning and adaptive behaviour. Factors associated with level of intellectual functioning and adaptive behaviour were analysed.Eight-six per cent (n = 36) of the children fulfilled DSM-5 criteria for intellectual disability (29% [n = 12] mild intellectual disability, 24% [n = 10] moderate intellectual disability, 33% [n = 14] severe intellectual disability, 0% profound intellectual disability) and 93% (n = 39) had an adaptive behaviour composite more than two standard deviations below the mean. Communication was a significant weakness compared with daily living skills (p < 0.001; mean difference 95% confidence interval [CI] -8.193 to -4.092) and socialization (p = 0.001; mean difference 95% CI 6.511 to -1.775) on the Vineland Adaptive Behavior Scales, Second Edition. The only factors significantly associated with both decreased adaptive behaviour and presence of severe intellectual disability was the presence of increased autistic symptoms and younger age.Children with Dravet syndrome have a very high level of intellectual disability and almost all have significant deficits in adaptive behaviour. Greater deficits in adaptive behaviour and greater severity of intellectual disability are associated with the presence of increased autistic symptoms, highlighting the need for comprehensive neurodevelopmental assessment for all affected children.Eighty-six per cent (n = 36) of children with Dravet syndrome fulfilled criteria for intellectual disability. Ninety-three per cent (n = 39) of children with Dravet syndrome had significant deficits in adaptive behaviour. Communication was a significant weakness on a measure of adaptive behaviour. Increased autistic symptoms were associated with greater deficits in cognition/adaptive behaviour. Older age and earlier status epilepticus were associated with decreased adaptive behaviour.
Dravet syndrome
Adaptive functioning
Adaptive behaviour
Borderline intellectual functioning
Cite
Citations (9)
COVID-19 is not the world's first pandemic, not its worst, or likely to be its last. In fact, there have been many pandemics throughout history with lessons for the current one. The most destructive pandemic of all time, at least in terms of the number of people killed in the shortest time, was the "Spanish flu" pandemic of 1918/1919. Why did it happen? What lessons did it teach us? And could it happen again? These questions are addressed in the context of the current COVID-19 pandemic and several other nearly equally devastating pandemics of earlier times
Pandemic
2019-20 coronavirus outbreak
Cite
Citations (8)
This essay examines the consequences of the COVID-19 pandemic on the United States and recommends new and improved strategies for future pandemics accordingly. The purpose of this project is to explore pandemic measures taken by the United States administration and to analyze the efficacy of each. However, in order to better understand the nature of the virus, the essay also explores possible origins of the virus, its structure, and how it is transmitted. Statistics regarding the COVID-19 pandemic (i.e. the number of total deaths and infections) were then collected from various sources which include the CDC, NIH, and the WHO. After this data was analyzed, it was apparent that the exponential growth of new cases and deaths each day during the beginning of the pandemic could have been prevented by stricter protocols. In the event of a similar pandemic in the future, the recommended protocols in this essay are potential strategies to avoid another pandemic as deadly as the current COVID-19 pandemic.
Pandemic
2019-20 coronavirus outbreak
Cite
Citations (0)
Abstract: Between 1% and 3% of persons in general population are estimated to have some degree of intellectual disability. A diagnosis of intellectual disability is based on clinical history, level of intellectual ability and level of adaptive function. Both, the intellectual and adaptive functioning are measured using individually administered standardized tests. More than 75% of persons who have intellectual disability have mild intellectual disability and an underlying specific etiology is less likely to be identified; whereas, in a small percentage of persons with severe intellectual disability, an underlying specific biologic cause is highly likely to be identified. Genetic abnormalities, inborn errors of metabolism and brain malformations are major categories of causes identified in severe to profound intellectual disability. The initial clinical presentation and recognition depends on the severity and underlying cause of intellectual disability. The etiology, severity, cognitive abilities, and adaptive function, vary among persons with intellectual disability and need consideration in developing a treatment plan. The physician plays an essential role in the evaluation, treatment of associated medical conditions and preventive care, and in facilitating and coordinating consultative services and community based care.
Etiology
Borderline intellectual functioning
Adaptive functioning
Adaptive behaviour
Cite
Citations (148)
Background This study examined whether daily choice availability for adults with intellectual disability was consistent with Nirje's (1973 Nirje B. The normalisation principle: Implications and comments. II – The immediate future. Advances in the care of the mentally handicapped, Gunzburg H. C. Balliere Tindall, London 1973, In [Google Scholar]) normalisation principle.Method Ratings of the daily choice availability of 59 people with intellectual disability in group homes and 198 individuals without intellectual disability in family homes were obtained.Results Level of disability, rather than age, affected choice availability of adult participants. Choice availability was significantly lower for adults with more severe intellectual disability, but no significant difference was found between adults with milder disability and those without intellectual disability. Quadratic and bilinear models were fitted to data from 198 adults and children without disability. The better fitting bilinear model showed an increase in choice availability during childhood that plateaued on reaching adulthood. Choice availability age‐equivalents were calculated, which were age‐appropriate for adults with milder intellectual disability, but substantially lower than expected for adults with moderate to severe disability.Conclusion The normalisation principle was met for adults with milder intellectual disability, but not for adults with more severe disability.
Cite
Citations (52)
Learning lessons from previous pandemics is not merely an academic exercise. Our experiences from 1918 and other 20th-century pandemics helped us prepare for and respond to the 2009 H1N1 pandemic. In addition to better understanding these earlier pandemics, we must continue to learn and apply lessons from our experience with the current H1N1 pandemic to improve our ability to respond to future pandemics. Any reflection on the first pandemics of the 20th and 21st centuries must begin with gratitude for the fruits of science and technology, many of which were unimaginable in 1918. We can now detect, prevent, and treat disease; clarify the dynamic circumstances of pandemics; and save lives.
Pandemic
Gratitude
2019-20 coronavirus outbreak
Cite
Citations (4)
This chapter explores the nature of intellectual disability. It identifies what intellectual disability is and the different degrees manifested, along with definitions of intellectual disability and its incidence and prevalence. The chapter also identifies how intellectual disability is diagnosed. Causes and manifestations of intellectual disability are outlined, along with the presentation of common conditions found in people with intellectual disability. The nature of intellectual disability nursing is explored, along with how it may be viewed as the purist form of nursing by adopting holistic approaches and working, as it does, with people across their lifespan. The principles and values of intellectual disability policy are outlined for each of the jurisdictions of the UK and the Republic of Ireland.
Presentation (obstetrics)
Cite
Citations (1)
To determine whether genes that cause developmental and epileptic encephalopathies (DEEs) are more commonly implicated in intellectual disability with epilepsy as a comorbid feature than in intellectual disability only.We performed targeted resequencing of 18 genes commonly implicated in DEEs in a cohort of 830 patients with intellectual disability (59% male) and 393 patients with DEEs (52% male).We observed a significant enrichment of pathogenic/likely pathogenic variants in patients with epilepsy and intellectual disability (16 out of 159 in seven genes) compared with intellectual disability only (2 out of 671) (p<1.86×10-10 , odds ratio 37.22, 95% confidence interval 8.60-337.0).We identified seven genes that are more likely to cause epilepsy and intellectual disability than intellectual disability only. Conversely, two genes, GRIN2B and SCN2A, can be implicated in intellectual disability without epilepsy; in these instances intellectual disability is not a secondary consequence of ongoing seizures but rather a primary cause. What this paper adds A subset of genes are more commonly implicated in epilepsy than other neurodevelopmental disorders. GRIN2B and SCN2A are implicated in intellectual disability and epilepsy independently.
Cite
Citations (5)
Chromosomal microarray analysis has become a powerful diagnostic tool in the investigation of patients with intellectual disability leading to the discovery of dosage sensitive genes implicated in the manifestation of various genomic disorders. Interstitial deletions of the short arm of chromosome 10 represent rare genetic abnormalities, especially those encompassing the chromosomal region 10p11‐p12. To date, only 10 postnatal cases with microdeletion of this region have been described, and all patients shared a common phenotype, including intellectual disability, abnormal behavior, distinct dysmorphic features, visual impairment, and cardiac malformations. WAC was suggested to be the main candidate gene for intellectual disability associated with 10 p11‐p12 deletion syndrome. Here, we describe a new case of de novo 10p11.23‐p12.1 microdeletion in a patient with intellectual disability, abnormal behavior, and distinct dysmorphic features. Our observation allows us to redefine the smallest region of overlap among patients reported so far, with a size of 80 Kb and which contains only the WAC gene. These findings strengthen the hypothesis that haploinsufficency of WAC gene might be likely responsible for intellectual disability and behavior disorders. Our data also led us to propose a clinical pathway for patients with this recognizable genetic syndrome depending on the facial dysmorphisms. © 2016 Wiley Periodicals, Inc.
Candidate gene
Cite
Citations (7)