Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910079
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Of the recent advances in education-related research in Down syndrome, the characterization of the Down syndrome behavioral phenotype has become a potentially critical tool for shaping education and intervention in this...Of the recent advances in education-related research in Down syndrome, the characterization of the Down syndrome behavioral phenotype has become a potentially critical tool for shaping education and intervention in this population. This article briefly reviews the literature on brain-behavior connections in Down syndrome and identifies aspects of the Down syndrome behavioral phenotype that are potentially relevant to educators. Potential challenges to etiologically informed educational planning are discussed.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563901
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The forces shaping intellectual disability policy-making are diverse; while many of the policy issues reviewed in this issue are specific to intellectual disabilities, there are others that transcend disability-specific...The forces shaping intellectual disability policy-making are diverse; while many of the policy issues reviewed in this issue are specific to intellectual disabilities, there are others that transcend disability-specific concerns. Our review is organized around six emerging demographic and socio-cultural trends that may directly and profoundly impact the intellectual disability field: aging, changing labor markets, immigration, families, federalism, and culture. Each of these trends is discussed in terms of their relevance and potential impact on disability policy.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563900
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Public financial support for intellectual disability in the United States grew from 2.3 billion in 1955 to 82.6 billion in 2004, and the federal government emerged during this period as the principal provider of such sup...Public financial support for intellectual disability in the United States grew from 2.3 billion in 1955 to 82.6 billion in 2004, and the federal government emerged during this period as the principal provider of such support. Notwithstanding this unprecedented growth in financial support, many inequities persist today in the distribution of financial resources and services across states, communities, families and to individual disabled consumers. Moreover, tens of thousands of persons with intellectual disabilities continue to live in institutions and nursing homes, waiting lists and aging caregivers are growing rapidly, and family support and supported employment programs receive limited funding. Research and training support has declined significantly in comparison to the growing financial commitments for services and income maintenance. To address these and other issues, the author suggests commissioning a new "President's Panel on Intellectual Disability" modeled on President Kennedy's landmark 1961 Panel on Mental Retardation. The new panel would be appointed during the first months of the new presidential administration in 2009 and deliver its report to the President in 2011, commemorating the 50(th) anniversary of the original President's Panel.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563899
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This article extracts principles from two Surgeon General reports, Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation (2002) and Call to Action to Improve the Health and Wellne...This article extracts principles from two Surgeon General reports, Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation (2002) and Call to Action to Improve the Health and Wellness of Persons with Disabilities (2005), and combines them with the Objectives from Chapter 6 of Healthy People 2010 to create a policy framework. This framework is used to review literature from the past decade on access to health care and health promotion for persons with intellectual and developmental disabilities (IDD). Review of the literature indicates an emerging evidence base for health promotion programs for persons with IDD. Research in health care and health promotion access requires improvements in surveillance and measurement of quality of life, as well as increased participation of persons with IDD and their families in its implementation. While international guidelines for primary health care have been developed for people with IDD, US guidelines are specialty focused and address specific conditions. Despite its recognized importance, there is surprisingly little information on training programs for health care providers to improve care of persons with IDD. Financing of health care continues to threaten access to comprehensive care for persons with IDD, particularly regarding coordination of care and availability of providers who accept Medicaid patients. Community-based sources of health care have been slow to emerge, and there is clear need for assumption of responsibility for providing care to persons with IDD. Future US policy should include consideration of environmental factors in health care access.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563898
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Epidemiological studies have consistently reported a significant association between poverty and the prevalence of intellectual disabilities. The available evidence suggests that this association reflects two distinct pr...Epidemiological studies have consistently reported a significant association between poverty and the prevalence of intellectual disabilities. The available evidence suggests that this association reflects two distinct processes. First, poverty causes intellectual disabilities, an effect mediated through the association between poverty and exposure to a range of environmental and psychosocial hazards. Second, families supporting a child with intellectual disabilities and adults with intellectual disabilities are at increased risk of experiencing poverty due to the financial and social impact of caring and the exclusion of people with intellectual disabilities from the workforce. It is likely that the association between poverty and intellectual disabilities accounts in part for the health and social inequalities experienced by people with intellectual disabilities and their families. Implications for policy and practice are discussed in relation to the funding of services for people with intellectual disabilities and preventative approaches to addressing the health and social inequalities experienced by people with intellectual disabilities and their families.
Wakeman SY, Browder DM, Meier I
… +1 more, McColl A
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563897
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In a review of current research and the No Child Left Behind (NCLB) legislation, this paper focuses on two specific issues: (a) how students with developmental disabilities show adequate yearly progress, including a desc...In a review of current research and the No Child Left Behind (NCLB) legislation, this paper focuses on two specific issues: (a) how students with developmental disabilities show adequate yearly progress, including a description of the assessments in which this population may participate, and (b) the policy issues surrounding NCLB including technical requirements of alternate assessments, alignment of content standards, assessments, and instruction, the requirement of all teachers to be highly qualified, and the relationship between NCLB and the Individuals with Disabilities Education Improvement Act (IDEA, 2004). Areas for future research are identified through a review of relevant literature.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563896
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This review examines later life family support for adults with developmental disabilities from a life course perspective that takes into account social trends and changes in service patterns and in attitudes of families....This review examines later life family support for adults with developmental disabilities from a life course perspective that takes into account social trends and changes in service patterns and in attitudes of families. Key issues addressed include: (1) trends affecting family caregiving, (2) health and social outcomes of life-long caregiving, (3) support needs of families, (4) family support policies and practices, and (5) recommendations for a research and policy agenda. Research examining outcomes of life-long caregiving has shown that most families adapt well to having a family member with disabilities. However, some families are at risk for poorer physical and mental health outcomes. These include cultural minorities and families of adults with behavioral challenges. Caregiving does seem to have a negative impact on maternal employment and family income as mothers often give up or cut back on employment to care for a child with developmental disabilities, who is more likely to continue living in the family home throughout adulthood than other adult children. Federal and state initiatives are addressing issues of family support through both the developmental disabilities and aging service systems.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563895
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This paper explores issues and implications for diagnosis and treatment, stemming from the growing number of children identified with autism spectrum disorders (ASDs). Recent developments and innovations in special educa...This paper explores issues and implications for diagnosis and treatment, stemming from the growing number of children identified with autism spectrum disorders (ASDs). Recent developments and innovations in special education and Medicaid programs are emphasized. Eligibility determination policies, innovations in diagnostic practices, the cost and financing of assessment, variability among programs in diagnostic criteria, and racial/ethnic disparities in the timing of diagnosis all influence the capacity of service systems to provide diagnoses in a timely, coordinated, accurate, economical, and equitable manner. There are several barriers to the more widespread provision of intensive intervention for children with ASDs, including lack of strong evidence of effectiveness in scaled-up public programs, uncertainty about the extent of obligations to provide services under the Individuals with Disabilities Education Act, high cost of intervention, and variability among states in their willingness to fund intensive intervention via Medicaid. Innovative policy experiments with respect to financing intensive intervention through schools and Medicaid are being conducted in a number of states.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563894
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The article reviews the federal statutes and relevant decisions of the U.S. Supreme Court that constitute the core concepts of disability policy and their application to persons with disabilities (especially developmenta...The article reviews the federal statutes and relevant decisions of the U.S. Supreme Court that constitute the core concepts of disability policy and their application to persons with disabilities (especially developmental disabilities) and their families.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563893
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Difficulties in finding, keeping, and ensuring the competence of the direct support workforce in community developmental disability services has long been a challenge for individuals, families, providers, and policy make...Difficulties in finding, keeping, and ensuring the competence of the direct support workforce in community developmental disability services has long been a challenge for individuals, families, providers, and policy makers. Direct support staff recruitment, retention, and competence are widely reported as one of the most significant barriers to the sustainability, growth, and quality of community services for people with developmental disabilities (ANCOR [2001] State of the states report. Alexandria, VA: ANCOR; Colorado Department of Human Services, [2000] Response to Footnote 106 of the FY 2001 appropriations long bill: Capacity of the community services systems for persons with developmental disabilities in Colorado; Hewitt [2000] Dynamics of the workforce crisis. Presentation at the NASDDDS Fall meeting. Alexandria, VA). While long in existence, these challenges are ones of growing concern because the number of people demanding community services is increasing and the population of people from which to recruit workers is declining (Office of the Assistant Secretary for Planning and Evaluation [2006] The supply of direct support professionals serving individuals with intellectual disabilities and other developmental disabilities: Report to Congress. Washington, DC: Office of Disability, Aging and Long-Term Care Policy, ASPE, U.S. Department of Health and Human Services). As the service system moves towards consumer direction, managed care, and more noncategorical service delivery systems, the difficulties of providing for an adequate and well-prepared workforce to support people with developmental disabilities becomes more complex and multifaceted. The solutions to those challenges are also more complex. This article reviews the literature regarding the complexity of the direct support workforce crisis, the effects of this crisis on various stakeholder groups, promising practices designed to address the challenges, and the related practice and policy implications.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563892
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This article reviews the current and changing status of residential supports for persons with intellectual and developmental disabilities (ID/DD). It examines four major trends in those supports: (1) Decreasing use of la...This article reviews the current and changing status of residential supports for persons with intellectual and developmental disabilities (ID/DD). It examines four major trends in those supports: (1) Decreasing use of larger institutions and increasing use of community housing; (2) Decreasing size among community settings; (3) Increasing numbers of people living in homes that they themselves own or rent; and (4) Decreasing out-of-home placements of children and youth. Within each trend the article provides a statistical description of the trend, its foundation in public policy, reviews the evidence of the trend's benefit to people with ID/DD, and identifies future challenges in sustaining the trend.
Munger KM, Gill CJ, Ormond KE
… +1 more, Kirschner KL
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17563891
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Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in de...Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326118
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Past autism research has often been dedicated to tracing the causes of the disorder to a localized neurological abnormality, a single functional network, or a single cognitive-behavioral domain. In this review, I argue t...Past autism research has often been dedicated to tracing the causes of the disorder to a localized neurological abnormality, a single functional network, or a single cognitive-behavioral domain. In this review, I argue that autism is a "distributed disorder" on various levels of study (genetic, neuroanatomical, neurofunctional, behavioral). "Localizing" models are therefore not promising. The large array of potential genetic risk factors suggests that multiple (or all) emerging functional brain networks are affected during early development. This is supported by widespread growth abnormalities throughout the brain. Interactions during development between affected functional networks and atypical experiential effects (associated with atypical behavior) in children with autism further complicate the neurological bases of the disorder, resulting in an "exponentially distributed" profile. Promising approaches to a better characterization of neural endophenotypes in autism are provided by techniques investigating white matter and connectivity, such as MR spectroscopy, diffusion-tensor imaging (DTI), and functional connectivity MRI. According to a recent hypothesis, the autistic brain is generally characterized by "underconnectivity." However, not all findings are consistent with this view. The concepts and methodology of functional connectivity need to be refined and results need to be corroborated by anatomical studies (such as DTI tractography) before definitive conclusions can be drawn.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326117
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This paper focuses on the communication and language phenotypes associated with three genetic disorders: Down syndrome, Williams syndrome, and fragile X syndrome. It is argued that there is empirical evidence that these...This paper focuses on the communication and language phenotypes associated with three genetic disorders: Down syndrome, Williams syndrome, and fragile X syndrome. It is argued that there is empirical evidence that these disorders predispose children to specific profiles of strength and weakness in some areas of speech, language, and communication, and that intervention planning for children with each syndrome may take an approach informed by these profiles. Issues related to within-group variability, shared outcomes among syndromes, and the need for empirical validation for syndrome-specific recommendations are discussed.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326116
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Although there is considerable variability, most individuals with Down syndrome have mental retardation and speech and language deficits, particularly in language production and syntax and poor speech intelligibility. Th...Although there is considerable variability, most individuals with Down syndrome have mental retardation and speech and language deficits, particularly in language production and syntax and poor speech intelligibility. This article describes research findings in the language and communication development of individuals with Down syndrome, first briefly describing the physical and cognitive phenotype of Down syndrome, and two communication related domains-hearing and oral motor skills. Next, we describe language development in Down syndrome, focusing on communication behaviors in the prelinguistic period, then the development of language in children and adolescents, and finally language development in adults and the aging period. We describe language development in individuals with Down syndrome across four domains: phonology, semantics, syntax, and pragmatics. Wethen suggest strategies for intervention and directions for research relating to individuals with Down syndrome.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326115
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Autism is a neurodevelopmental disorder defined by impairments in social and communication development, accompanied by stereotyped patterns of behavior and interest. The focus of this paper is on the early development of...Autism is a neurodevelopmental disorder defined by impairments in social and communication development, accompanied by stereotyped patterns of behavior and interest. The focus of this paper is on the early development of communication in autism, and early intervention for impairments in communication associated with this disorder. An overview of components of communication is provided. Communication characteristics that are diagnostic of autism are summarized, with consideration of the overlap between social and communication impairment, particularly for children with autism functioning at the prelinguistic level. Early communication development and predictors of communication functioning in autism are examined, based on a review of prospective and retrospective studies. The focus of the discussion then turns to intervention. Consideration is given to the rationale for beginning intervention as early in life as possible for children with autism. Implications of motor, imitation, and play deficits for communication-based intervention are examined. Finally, issues related to the design and delivery of intervention for young children with autism are presented, along with a review of the major early intervention approaches for autism.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326114
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Genetic factors are important contributors to language and learning disorders, and discovery of the underlying genes can help delineate the basic neurological pathways that are involved. This information, in turn, can he...Genetic factors are important contributors to language and learning disorders, and discovery of the underlying genes can help delineate the basic neurological pathways that are involved. This information, in turn, can help define disorders and their perceptual and processing deficits. Initial molecular genetic studies of dyslexia, for example, appear to converge on defects in neuronal and axonal migration. Further study of individuals with abnormalities of these genes may lead to the recognition of characteristic cognitive deficits attributable to the neurological dysfunction. Such abnormalities may affect other disorders as well, and studies of co-morbidity of dyslexia with attention deficit disorder and speech sound disorder are helping to define the scope of these genes and show the etiological and cognitive commonalities between these conditions. The genetic contributions to specific language impairment (SLI) are not as well defined at this time, but similar molecular approaches are being applied to identify genes that influence SLI and comorbid disorders. While there is co-morbidity of SLI with dyslexia, it appears that most of the common genetic effects may be with the language characteristics of autism spectrum disorders rather than with dyslexia and related disorders. Identification of these genes and their neurological and cognitive effects should lay out a functional network of interacting genes and pathways that subserve language development. Understanding these processes can form the basis for refined procedures for diagnosis and treatment.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326113
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This article assesses the state of the literature on word-attack skills and phonological awareness (PA) in individuals with mental retardation, in light of progress towards the development of effective teaching procedure...This article assesses the state of the literature on word-attack skills and phonological awareness (PA) in individuals with mental retardation, in light of progress towards the development of effective teaching procedures. The literature contains promising findings. Studies have shown PA to be correlated with word-attack skills in individuals with mental retardation, as has been shown conclusively in typically developing children. This suggests that instruction in PA would facilitate the acquisition of word-attack skills in individuals with mental retardation, as it does with typically developing children. As of yet, however, very few experimental studies designed to demonstrate effective teaching procedures for PA and word-attack skills have been published. This research field might evolve most effectively and efficiently by following a two-step research program. First, test new teaching procedures in a series of small-N studies, each study incorporating modifications of teaching procedures based on the results of the previous study. Once procedures prove effective at this level, the resources necessary to pursue large-scale studies can be used to their best advantage.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326112
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Research over the past 50 years has yielded several promising approaches and many specific intervention techniques designed to enhance the communication and language development of young children with intellectual and de...Research over the past 50 years has yielded several promising approaches and many specific intervention techniques designed to enhance the communication and language development of young children with intellectual and developmental delays and disabilities. Yet virtually no systematic research has been conducted on the effects of different treatment intensities. We review how intervention intensity has been defined in the literature and propose a set of terms borrowed from medicine that are intended to capture the dynamic aspects of this concept as an aid to further investigation. On the basis of this approach, we propose four types of knowledge that can be generated through the systematic study of treatment intensity and discuss appropriate methods for investigating the effects of differential treatment intensities. We conclude with three recommendations for the field.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17326111
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Augmentative and alternative communication is a compilation of methods and technology designed to supplement spoken communication for people with limited speech or language skills, including children with developmental a...Augmentative and alternative communication is a compilation of methods and technology designed to supplement spoken communication for people with limited speech or language skills, including children with developmental and intellectual disabilities. The field of AAC has evolved rapidly within the last 10 years, due to a combination of empirical advances from research as well as rapid changes in technology. This article reviews some of the most significant aspects of this growth as it relates to children with developmental disabilities. Major issues within the field, the evidence base available to practitioners and researchers, and promising areas of future growth are identified.