Evidence and Evidence-Based Practices: Are We There Yet?

The purpose of this article is to move the field of intellectual and closely related developmental disabilities (IDD) towards a better understanding of evidence and evidence-based practices. To that end, we discuss (a) different perspectives on and levels of evidence, (b) commonly used evidence-gathering strategies, (c) standards to evaluate evidence, (d) the distinction between internal and external validity, and (e) guidelines for establishing evidence-based practices. We also describe how the conceptualization and use of evidence and evidence-based practices are changing to accommodate recent trends in the field.

Development of an adaptive, personalized, and scalable dementia care program: Early findings from the Care Ecosystem.

Katherine Possin and colleagues report on the implementation, development, and early findings of the Care Ecosystem, an adaptive, personalized, and scalable dementia care program.

The Support Needs of Children with Intellectual Disability and Autism: Implications for Supports Planning and Subgroup Classification.

The Supports Intensity Scale-Children's version (SIS-C) was developed to provide a standardized measure of support needs of children with intellectual disability. Over half of the norming sample had a secondary diagnosis of autism. Using this subset of the sample, we engaged in exploratory analysis to examine the degree to which latent clusters were present in the data, and after identifying these clusters, the degree to which they mapped on the SIS-C standard scores.

The Relation Between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability.

Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability.

Universities and Patent Demands.

Research universities have made enormous contributions to the field of medicine and the treatment of human disease. Alone or in collaboration with pharmaceutical companies, academic researchers have added to the store of knowledge that has led to numerous life science breakthroughs. A new chapter may be opening for academic researchers, however, that could lead to a darker tale.

Ruminal expression of the NQO1, RGS5, and ACAT1 genes may be indicators of feed efficiency in beef steers.

Ruminal genes differentially expressed in crossbred beef steers from USMARC with variation in gain and feed intake were identified in a previous study. Several of the genes identified with expression patterns differing between animals with high gain-low feed intake and low gain-high feed intake were evaluated in a separate, unrelated population of Angus × Hereford beef steers from the University of Wyoming that was classified to differ in residual feed intake (RFI). Of the 17 genes tested, two were differentially expressed by RFI class in the Angus × Hereford animals.

Informed Consent, Body Property, and Self-Sovereignty.

Recent cases involving biosamples taken from indigenous tribes and newborn babies reveal the emptiness of informed consent. This venerable doctrine often functions as a charade, a collective fiction which thinly masks the uncomfortable fact that the subjects of human research are not actually afforded full information regarding the types of research that may be contemplated, nor do they provide meaningful consent. But if informed consent fails to provide adequate protection to the donors of biological materials, why not turn to principles of property law? Property is power, yet current law permits everyone except for those who donate biological materials to possess property rights.

Pregnant at work: time for prenatal care providers to act.

Fifty years ago, when a woman became pregnant, she was expected to stop working. Today, however, most women who work are the primary, sole, or co-breadwinner for their families, and their earnings during pregnancy are often essential to their families' economic well-being. Medical data about working during pregnancy are sparse but generally show that both low-risk and high-risk women can tolerate work-related duties well, although some work accommodations (eg, providing a chair for sitting, allowing snacks, or modifying the work schedule) may be necessary.

A Structural Equation Model of the relationship between physical activity and quality of life.

: Literature shows that practicing physical activity improves the general health and quality of life of people with intellectual disabilities. However, there is little empirical research on the specific benefits physical activity provides and to what extent these benefits occur. The goal of this study was to examine the impact of perceptions of physical activity and the individualized support on each of eight quality of life-related domains and three higher-order quality of life factors.

A systematic approach to an organization's sustainability.

This article integrates the concepts of sustainability and quality improvement into a systematic approach to an organization's sustainability. The article: (a) presents a literature-based model that incorporates the factors that drive an organization's sustainability; (b) describes how sustainability is operationalized through a systematic approach to quality improvement; (c) discusses the advantages of a systematic approach to sustainability; and (d) shares with the reader literature and experientially-based lessons learned about the approach.

Development and Standardization of the Diagnostic Adaptive Behavior Scale: Application of Item Response Theory to the Assessment of Adaptive Behavior.

The Diagnostic Adaptive Behavior Scale (DABS) was developed using item response theory (IRT) methods and was constructed to provide the most precise and valid adaptive behavior information at or near the cutoff point of making a decision regarding a diagnosis of intellectual disability. The DABS initial item pool consisted of 260 items. Using IRT modeling and a nationally representative standardization sample, the item set was reduced to 75 items that provide the most precise adaptive behavior information at the cutoff area determining the presence or not of significant adaptive behavior deficits across conceptual, social, and practical skills.

Whole-Genome Screening of Newborns? The Constitutional Boundaries of State Newborn Screening Programs.

State newborn screening (NBS) programs routinely screen nearly all of the 4 million newborns in the United States each year for ∼30 primary conditions and a number of secondary conditions. NBS could be on the cusp of an unprecedented expansion as a result of advances in whole-genome sequencing (WGS). As WGS becomes cheaper and easier and as our knowledge and understanding of human genetics expand, the question of whether WGS has a role to play in state NBS programs becomes increasingly relevant and complex.

Moving Us Toward a Theory of Individual Quality of Life.

This article discusses three steps involved in moving us toward a theory of individual quality of life: developing a conceptual model, integrating theory components, and applying and evaluating the theory. Each of the proposed steps is guided by established standards regarding theory development and use. The article concludes with a discussion of criteria that can be used to evaluate the theory and the contribution that a theory of individual quality of life would make to the field of disability.

Individual support plans of people with intellectual disabilities in residential services: content analysis of goals and resources in relation to client characteristics.

Background: Goals and objectives as mentioned in Individual Support Plans (ISPs) were analysed to explore what domains of quality of life they are associated with, what support resources are referenced for achieving the goals, and how domains and resources are related to clients age, gender and intellectual disability (ID) level.

Method: A total of 209 ISPs for persons with ID from eight residential Dutch service provider organisations were analysed. Mixed linear regression analyses were conducted to examine the relations between client characteristics and the content of goals and support resources.

Validity and reliability of the Diagnostic Adaptive Behaviour Scale.

Background: The Diagnostic Adaptive Behaviour Scale (DABS) is a new standardised adaptive behaviour measure that provides information for evaluating limitations in adaptive behaviour for the purpose of determining a diagnosis of intellectual disability. This article presents validity evidence and reliability data for the DABS.

Method: Validity evidence was based on comparing DABS scores with scores obtained on the Vineland Adaptive Behaviour Scale, second edition.

Funding the Costs of Disease Outbreaks Caused by Non-Vaccination.

While vaccination rates in the United States are high - generally over 90 percent - rates of exemptions have been going up, and preventable diseases coming back. Aside from their human cost and the financial cost of treatment imposed on those who become ill, outbreaks impose financial costs on an already burdened public health system, diverting resources from other areas. This article examines the financial costs of non-vaccination, showing how high they can be and what they include.

Beyond Work-Life "Integration".

Research on the work-family interface began in the 1960s and has grown exponentially ever since. This vast amount of research, however, has had relatively little impact on workplace practice, and work-family conflict is at an all-time high. We review the work-family research to date and propose that a shift of attention is required, away from the individual experience of work and family and toward understanding how identity and status are defined at work.

Selective Reduction: "A Soft Cover for Hard Choices" or Another Name for Abortion?

Selective reduction and abortion both involve the termination of fetal life, but they are classified by different designations to underscore the notion that they are regarded as fundamentally different medical procedures: the two are performed using distinct techniques by different types of physicians, upon women under very different circumstances, in order to further dramatically different objectives. Hence, the two procedures appear to call for a distinct moral calculus, and they have traditionally evoked contradictory reactions from society. This essay posits that despite their different appellations, selective reduction and abortion are essentially equivalent.

My Obstetrician Got Me Fired: How Work Notes Can Harm Pregnant Patients and What to Do About It.

Prenatal care providers are frequently asked to provide employment notes for their patients requesting medical leave or changes to work duties. Writing employment notes correctly can help patients negotiate for and obtain medically indicated workplace accommodations, allowing them to continue to work and earn an income. However, a poorly written or poorly timed note can jeopardize a patient's employment and salary.