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.
Fragile X syndrome (FXS) is the leading inherited cause of mental retardation. In this article, we review what is known about the language and related problems of individuals with FXS. In doing so, we focus on the syndrome-specific features of the language phenotype and on the organismic (i.e., genetic and individual neurocognitive and behavioral) and environmental factors associated with within-syndrome variation in the phenotype. We also briefly review those aspects of the behavioral phenotype of FXS that are relevant for understanding syndrome-specific features of, and within-syndrome variability in, language. The review includes summaries of research on the prelinguistic foundations for language development and on each of the major components of language (i.e., vocabulary, morphosyntax, and pragmatics). Throughout the review, we point out implications of existing research for intervention as well as directions for future research.
The purpose of this review is to (a) document the current status of conceptualizing and measuring family outcomes related to having a member with an intellectual disability and (b) determine the extent to which family research focuses on internal family characteristics as contrasted to external family support. The reviewers collected 28 articles using the terms well-being, adaptation, family functioning, or family quality of life in the title. Results of our analyses are presented as a comparison between well-being, adaptation, and family functioning articles in one group and family quality of life articles in a second group. Both groups lacked explicit conceptual definitions, theory, and random/representative samples. The articles placed an undue emphasis on maternal participation, and tended to report a single family member score as representative of the whole family. Two major differences between the groups was a tendency for family quality of life studies to be grounded in conceptual frameworks and focus on new instrument development. Recommendations for future research directions are included.
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.
Mental Retardation and Developmental Disabilities Research ReviewsVolume 13, Issue 1 p. 1-2 Introduction to communication and language development and intervention Steven F. Warren, Corresponding Author Steven F. Warren Guest Editor [email protected] Life Span Institute University of Kansas, Lawerence, KSLife Span Institute, Room 1052, University of Kansas, 1000 Sunnyside Avenue, Lawerence, KS 66045-7555Search for more papers by this authorLeonard Abbeduto, Leonard Abbeduto Guest Editor Waisman Center University of Wisconsin–Madison, Madison, WISearch for more papers by this author Steven F. Warren, Corresponding Author Steven F. Warren Guest Editor [email protected] Life Span Institute University of Kansas, Lawerence, KSLife Span Institute, Room 1052, University of Kansas, 1000 Sunnyside Avenue, Lawerence, KS 66045-7555Search for more papers by this authorLeonard Abbeduto, Leonard Abbeduto Guest Editor Waisman Center University of Wisconsin–Madison, Madison, WISearch for more papers by this author First published: 26 February 2007 https://doi.org/10.1002/mrdd.20153Citations: 2AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinkedInRedditWechat No abstract is available for this article. REFERENCES Abbeduto L,Keller-Bell Y,Richmond EK,Murphy MM. 2006. Research on language development and mental retardation: History, theories, findings, and future directions. In: LM Glidden, editor. International review of research in mental retardation. New York: Academic Press. p 2–39. Dolen TR. 1997. Communication processes and developmental disabilities. Ment Retard Dev Disabil Res Rev 3: 279–368. Rice ML,Warren SF. 2004. Developmental language disorders: from phenotypes to etiologies. Mahwah, NJ: Lawrence Erlbaum. Warren SF,Abbeduto L. 1992. The relation of communication and language development to mental retardation. Am J Ment Retard 97(2): 125–130. Citing Literature Volume13, Issue1Special Issue: Language and Communication2007Pages 1-2 ReferencesRelatedInformation
Mental Retardation and Developmental Disabilities Research ReviewsVolume 13, Issue 3 p. 197-198 Editorial Introduction to the special issue on Down syndrome Marsha Mailick Seltzer, Corresponding Author Marsha Mailick Seltzer [email protected] Waisman Center, University of Wisconsin-Madison, Madison, WIUniversity of Wisconsin, Waisman Center, 1500 Highland Avenue, Madison, WI 53705Search for more papers by this authorDavid Patterson, David Patterson Eleanor Roosevelt Institute, Denver, COSearch for more papers by this authorIra T. Lott, Ira T. Lott University of California, Irvine, Orange, CASearch for more papers by this author Marsha Mailick Seltzer, Corresponding Author Marsha Mailick Seltzer [email protected] Waisman Center, University of Wisconsin-Madison, Madison, WIUniversity of Wisconsin, Waisman Center, 1500 Highland Avenue, Madison, WI 53705Search for more papers by this authorDavid Patterson, David Patterson Eleanor Roosevelt Institute, Denver, COSearch for more papers by this authorIra T. Lott, Ira T. Lott University of California, Irvine, Orange, CASearch for more papers by this author First published: 01 October 2007 https://doi.org/10.1002/mrdd.20161Citations: 1AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL No abstract is available for this article.Citing Literature Volume13, Issue3Special Issue: Special Issue on Down Syndrome2007Pages 197-198 RelatedInformation
Down syndrome (DS) is the most common genetic cause of significant intellectual disability in the human population, occurring in roughly 1 in 700 live births. The ultimate cause of DS is trisomy of all or part of the set of genes located on chromosome 21. How this trisomy leads to the phenotype of DS is unclear. The completion of the DNA sequencing and annotation of the long arm of chromosome 21 was a critical step towards understanding the genetics of the phenotype. However, annotation of the chromosome continues and the functions of many genes on chromosome 21 remain uncertain. Recent findings about the structure of the human genome and of chromosome 21, in particular, and studies on mechanisms of gene regulation indicate that various genetic mechanisms may be contributors to the phenotype of DS and to the variability of the phenotype. These include variability of gene expression, the activity of transcription factors both encoded on chromosome 21 and encoded elsewhere in the genome, copy number polymorphisms, the function of conserved nongenic regions, microRNA activities, RNA editing, and perhaps DNA methylation. In this manuscript, we describe current knowledge about these genetic complexities and their likely importance in the context of DS. We identify gaps in current knowledge and suggest priorities to fill these gaps.
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.
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.
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.
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.
Mental Retardation and Developmental Disabilities Research ReviewsVolume 13, Issue 4 p. 291-292 Editorial Introduction: Family adaptation to intellectual and developmental disabilities Donald B. Bailey Jr., Corresponding Author Donald B. Bailey Jr. Guest Editor [email protected] RTI International, 3040 Cornwallis Rd., Research Triangle Park, NC 27709RTI International, 3040 Cornwallis Rd., Research Triangle Park, NC 27709Search for more papers by this author Donald B. Bailey Jr., Corresponding Author Donald B. Bailey Jr. Guest Editor [email protected] RTI International, 3040 Cornwallis Rd., Research Triangle Park, NC 27709RTI International, 3040 Cornwallis Rd., Research Triangle Park, NC 27709Search for more papers by this author First published: 02 November 2007 https://doi.org/10.1002/mrdd.20168Citations: 17AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article.Citing Literature Volume13, Issue4Special Issue: Families of Children with Developmental Disabilities2007Pages 291-292 RelatedInformation
The years 2006 and 2007 saw the publication of three new and different approaches to prevention or amelioration of Down syndrome effects on the brain and cognition. We describe the animal model systems that were critical to this progress, review these independent breakthrough studies, and discuss the implications for therapeutic approaches suggested by each.
Down syndrome is the most prevalent cause of intellectual impairment associated with a genetic anomaly, in this case, trisomy of chromosome 21. It affects both physical and cognitive development and produces a characteristic phenotype, although affected individuals vary considerably with respect to severity of specific impairments. Studies focusing on the cognitive characteristics of Down syndrome were reviewed, and while performance in most areas could be predicted based upon overall intellectual disability, relative weaknesses were consistently found to be associated with expressive language, syntactic/morphosyntactic processing, and verbal working memory. This profile of uneven deficits could result from a failure to develop typically automatic processing for speech perception and production, and this possibility is discussed along with its implications for intervention.
Expressed emotion (EE) is a measure of the affective relationship between two people characterized by criticism, hostility, and emotionally over-involved attitudes. Outside of the field of intellectual disabilities, there has been considerable interest in EE as an environmental marker that explains variance in the severity and/or course of a number of psychiatric disorders. Researchers have also studied EE in parents and found strong associations with children's behavior problems. In this review, we focus on the data from 11 published studies of EE in families of children and adults with intellectual disabilities. We conclude that there is evidence for the presence of high EE in some families, and that this alone should concern researchers and clinicians and set an agenda for considerable future research effort. We also note a lack of attention to the measurement of EE in intellectual disability. In terms of the existing evidence base, we suggest that there is support for the hypothesis that behavior problems in children and adults with intellectual disabilities may be related to high EE in parents, and a small amount of data predicting over time support the putative causal effect of high EE on maintaining or exacerbating behavior problems. Given that EE is perhaps best conceptualized as the result of an interaction between caregivers and those cared for, there is a need to explore interventions that may help to remediate high EE within families. It is also important to understand from this position that EE may be a normative part of the experience of caring for someone under very stressful circumstances and not something for which families are blamed. Other future research priorities and some implications for practice are also discussed.
Mental Retardation and Developmental Disabilities Research ReviewsVolume 13, Issue 2 p. iii-iv Editorial Policies that shape the intellectual disabilities service system Susan L. Parish, Corresponding Author Susan L. Parish Guest Editor parish@unc.edu School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaSchool of Social Work, University of North Carolina at Chapel Hill, 301 Pittsboro Street, CB 3550, Chapel Hill, NC 27599-3550Search for more papers by this authorGlenn T. Fujiura, Glenn T. Fujiura Guest Editor Department of Disability and Human Development, University of Illinois at Chicago, IllinoisSearch for more papers by this author Susan L. Parish, Corresponding Author Susan L. Parish Guest Editor parish@unc.edu School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaSchool of Social Work, University of North Carolina at Chapel Hill, 301 Pittsboro Street, CB 3550, Chapel Hill, NC 27599-3550Search for more papers by this authorGlenn T. Fujiura, Glenn T. Fujiura Guest Editor Department of Disability and Human Development, University of Illinois at Chicago, IllinoisSearch for more papers by this author First published: 09 July 2007 https://doi.org/10.1002/mrdd.20155Citations: 2AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat No abstract is available for this article.Citing Literature Volume13, Issue2Special Issue: Public Policy Aspects of the Developmental Disabilities2007Pages iii-iv RelatedInformation
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.
This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups.
Down syndrome (DS) is associated with abnormalities in multiple organ systems and a characteristic phenotype that includes numerous behavioral features. Language, however, is among the most impaired domains of functioning in DS and, perhaps, also the greatest barrier to independent meaningful inclusion in the community. In this article, we review what is known about the extent, nature, and correlates of the language and related problems of individuals with Down syndrome. In doing so, we focus largely on the syndrome-specific features of the language phenotype, although we also consider within-syndrome variation. The review focuses on the prelinguistic foundations of language and the major components of language (i.e., vocabulary, syntax, and pragmatics). We also consider two topics in the treatment and education of individuals with DS: prelinguistic communication intervention and the acquisition of literacy skills.
In this article, we review the literature on siblings of individuals with autism spectrum disorders (ASD) from a lifespan developmental perspective, from infancy through adulthood, focusing on the sibling relationship and sibling well-being. We situate this review within the larger body of research on siblings of individuals with developmental disabilities (DD) across the lifespan. We then consider the genetic aspects of ASDs and their implications for siblings. We conclude that there is an evidence of atypical social and communication development in some siblings of children with an ASD during infancy. During childhood and adolescence, siblings describe both positive and negative aspects of their sibling relationship and there is some evidence that siblings of children with an ASD may be at heightened risk for social and behavioral adjustment problems. The limited research on adulthood suggests that lack of closeness in the sibling relationship and social and emotional difficulties may continue. We encourage more attention focused on developmental issues, specifically with respect to samples in narrower age groups and in longitudinal research. Finally, we note the variability in sibling outcomes, and suggest further examination of potential moderating and mediating factors, including genetic predispositions.
