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PubMed1991

Whose needs are we meeting? Results of a consumer satisfaction survey of persons with developmental disabilities in Colorado.

Results of one state's attempt to survey consumers and/or their families regarding their level of satisfaction with existing services, their needs for alternative or additional services, and their perceptions of overall quality of life are presented. Two hundred forty-seven individuals with developmental disabilities ranging in age from 0-72 years were interviewed. Information on consumer satisfaction and levels of integration, productivity and independence were measured for the following services: case management, residential, education, vocational, health, individual support, transportation, and caregiver support.

Activities of Daily Living↗
PubMed1997

Behavioral consequences of abnormal cortical development: insights into developmental disabilities.

Cerebral cortical development occurs in precisely-timed stages that can be divided into neurogenesis, neuronal migration and neuronal differentiation. These events occur during discrete time windows that span the late prenatal and early postnatal periods in both rodents and primates, including humans. Insults at particular developmental stages can lead to distinctive cortical abnormalities including cortical hypoplasia (reduced cell number), cortical ectopias (abnormalities in migration) and cortical dysplasias (abnormalities in the shapes or numbers of dendrites). In this review, we examine some of the most extensively-studied animal models of disrupted stages of cortical development and we compare long-term anatomical, neurochemical, and behavior abnormalities in these models. The behavioral abnormalities in these models range from alterations in simple motor behaviors to food hoarding and maternal behaviors as well as cognitive behaviors. Although we examine concisely animal models of cortical hypoplasia and cortical ectopias, we focus here on developmental manipulations that affect cortical differentiation, particularly, those that interrupt the normal ontogeny of the neurotransmitter-defined cortical afferent systems: norepinephrine, serotonin, dopamine and acetylcholine. All of these afferents presumably play a critical role in the maturation of their cortical targets; the timing of the afferents' entry into the cortex and their effects on their cortical targets, however, are different. We, therefore, compare the specific anatomical, neurochemical and behavioral effects of manipulations of the different cortical afferents. Because of the considerable evidence that cortical development proceeds differently in the two sexes, when data are available, we address whether perinatal insults differentially affect the sexes. Finally, we discuss how these developmental studies provide insights into cellular and neurochemical correlates of behavioral functional abnormalities and the relevance of these data to understanding developmental disabilities in humans.

Animals↗
PubMed1994

Is fragile X syndrome a pervasive developmental disability? Cognitive ability and adaptive behavior in males with the full mutation.

In addition to mental retardation (MR), fragile X [fra(X)] syndrome has been associated with various psychopathologies, although it appears that the link is secondary to MR. It has been proposed that individuals with the full mutation be classified as a subcategory of pervasive developmental disorders (PDD). If fra(X) males are to be categorized as PDD, how do they compare with other types of developmental disabilities? We examined 27 fra(X) males aged 3-14 years, from 4 sites in North America. Measures of cognitive abilities were obtained from the Stanford-Binet Fourth Edition (SBFE), while levels of adaptive behavior were evaluated using the Vineland Adaptive Behavior Scales (VABS). Control subjects were sex-, age-, and IQ matched children and adolescents ascertained from the Developmental Evaluation Clinic (DEC) at Kings County Hospital. At the DEC, control subjects were diagnosed as either MR (n = 43) or autistic disorder (AD; n = 22). To compare subjects' adaptive behavior (SQ) with their cognitive abilities (IQ), a ratio of [(SQ/IQ) x 100] was computed. Results graphed as cumulative distribution functions (cdf) revealed that the cdf for AD males, who by definition are socially impaired, was positioned to the left of the cdf for MR controls, as expected. Mean ratio for AD males (70) was lower than for MR males (84). On the other hand, the cdf for fra(X) males was positioned far to the right of either AD or MR controls (mean ratio = 125). Statistical tests showed that SQ of fra(X) males was significantly higher than controls.(ABSTRACT TRUNCATED AT 250 WORDS)

Adaptation, Psychological↗
PubMed2001

Consumer and surrogate preferences for a cash option versus traditional services: Florida adults with developmental disabilities.

As long-term service expenditures have risen, policymakers have sought ways to control costs while maintaining consumer satisfaction. Concurrently, there is increasing interest in the disability community in consumer direction. The Cash and Counseling Demonstration and Evaluation (CCDE) seeks to increase consumer direction and control costs by offering a cash allowance and information services to persons with disabilities, enabling them to purchase needed assistance. Because the disability community is composed of diverse subgroups, needs of these consumer communities must be assessed individually. Results from a telephone survey conducted to assess the interest in a cash option for Florida adults with developmental disabilities is presented, the three-state CCDE described, how survey findings can inform consumer information efforts discussed, and policy issues highlighted.

Adult↗
PubMed1992

Supporting consumer-mandated programming for persons with developmental disabilities.

The development of health policies is often initiated to meet political objectives, but policies can be, to a great extent, shaped by information found in surveys and other health services research. The following article provides an example of how survey data can be used to shape policy regarding developmental disabilities. It also illustrates how occupational therapists can use the data to adjust the focus of their services to meet consumer demand and implement shifts in policy.

Deinstitutionalization↗
PubMed2005

Empowerment in parents of school-aged children with and without developmental disabilities.

BACKGROUND: Despite the widespread use of the term 'empowerment' in clinical literature to describe both a desirable process and the outcome of service delivery, the term remains more of a theoretical than practical construct. This study examined the factors that contribute to empowerment in parents of school-aged children with and without developmental disabilities (DD) using the Double ABCX model of family adaptation contrasted with the linear ACBX model. METHODS: Parents of children with (n = 100, 97% mothers) and without (n = 100, 98% mothers) DD completed questionnaires relating to child behaviour problems, parent stress and well-being, and formal and informal support. Structural equation modelling was used RESULTS: Parents of children with DD reported more child behaviour problems, more stress, less well-being and more social support than parents of children without DD. Structural equation modelling supported the ACBX model for both groups. A linear relationship was found in which parent well-being and resources mediated the relationship between the stressor (child behaviour problems) and the outcome (empowerment). CONCLUSIONS: The results of the current study support Hastings and Taunt's assertion in 2002, in that empowerment was adequately explained using a traditional model of family functioning. The significant prediction offered by the parent's resources points to the need to deliver services in a manner that is more family-centred. In the education system, this means providing parents with clear messages regarding the schools goals, clarifying the parent's rights and responsibilities, including the parent in planning and decision making, respecting their knowledge as caregivers and supporting their hopes for their child.

Adaptation, Psychological↗
PubMed2004

Alienated advocacy: perspectives of Latina mothers of young adults with developmental disabilities on service systems.

Although collaborative partnership between parents and professionals is a cornerstone of the special education and service systems, this relationship exists more as an ideal, especially when low-income, culturally diverse families are involved. Through three focus groups, we examined the beliefs of 16 low-income Latina mothers of young adults with developmental disabilities about their relationships with the educational and service delivery systems. Primary concerns identified were (a) poor communication, (b) low effort in providing services, (c) negative attitudes of professionals toward the client-children, (d) negative treatment of parents by professionals, and (e) the mother's role as central to the well-being of her child. Mothers tended to adopt a posture of alienated advocacy in relation to their child's educational and service needs.

Adult↗
PubMedDate not supplied

[Work with parents of children with chronic illness or developmental disability].

INTRODUCTION: It is more and more important to work with parents of disabled children or children with chronic illness. PURPOSE: The goal of this study was to investigate mother's presence during hospitalization in regard to the child's handicap. We also wanted to establish if parents were trained to work with children with developmental disabilities. MATERIAL AND METHODS: In order to learn if parents of disables or chronically ill children were trained to help them, parents of 99 children hospitalized at Principovac Hospital were asked to fill out a questionnaire. RESULTS AND DISCUSSION: It was established that parents of children with multiple disabilities were best trained, whereas parents of mentally handicapped children were the least trained. Parents of physically handicapped children (63.6%) and children with multiple disability (63%) were mostly present during hospitalization.

Adolescent↗
PubMed1994

Incidence of significantly altered pain experience among individuals with developmental disabilities.

Absence of basic pain behaviors when an injury or illness is typically painful suggests that the experience of pain may be significantly altered. In the present study third-party reporting of injury/illness incidents was used to estimate the incidence of pain insensitivity/indifference and provide evidence of its impact. A significantly elevated pain threshold was noted for 25.2% of 123 individuals with developmental disabilities. Those with more severe mental retardation were also more likely to display signs of pain insensitivity or indifference. These individuals risk avoidable death and increased physical disability as a result of failure to recognize and respond to illnesses and injuries that would be painful for others. Implications for rehabilitation practitioners and medical personnel were discussed.

Adult↗
PubMed1992

Improving parent-child interactions for families of children with developmental disabilities.

Child Management Training (CMT) involves compliance training with a focus on consistent use of antecedents and consequences. Planned Activities Training (PAT) focuses on teaching parents to plan for and engage in activities with their children. A multiple probe design counterbalancing PAT and CMT showed that PAT and CMT were about equally effective in improving mother-child interactions in four families with children with developmental disabilities. Responses to a social validation questionnaire indicated that parents were satisfied with the services received, and that PAT was the slightly preferred treatment. Prior research demonstrated that PAT enhanced the results of CMT. The practical advantages of PAT over CMT are discussed.

Behavior Therapy↗
PubMedDate not supplied

A survey of the availability of dental services to developmentally disabled persons residing in the community.

Public Law 88-164, enacted in 1963, has led to extensive deinstitutionalization of persons with mental retardation from a peak census of 194,650 in 1967 to 91,440 by 1988. This population now depends on the community-based health care system for medical and dental care. A survey conducted to determine the availability of dental care to the developmentally disabled residing in group homes located in north central Florida indicated that 40% of caretakers experienced difficulty in locating dentists willing to provide comprehensive dental services for residents. According to the caretakers, although 75% of the residents were cooperative dental patients, dentists were reluctant to provide services for a variety of reasons, including financial disincentives, inadequate knowledge and preparation, and a lack of proper equipment necessary to treat this group of special patients.

Adolescent↗
PubMed1994

Position paper on social work values: practice with individuals who have developmental disabilities.

This position paper was developed in response to a discussion led by Iris Gordon, president of the Social Work Division of the American Association on Mental Retardation (AAMR) at the 1991 annual meeting on the importance of social work values and the need for clarification in other divisions of the AAMR. The role of social workers and the importance of social work values in the field of developmental disabilities were discussed.

Adolescent↗
PubMed2002

Feasibility, reliability and validity of the Spanish version of Psychiatric Assessment Schedule for Adults with Developmental Disability: a structured psychiatric interview for intellectual disability.

BACKGROUND: Over 30% of people with intellectual disability (ID) have a comorbid psychiatric disorder. However, there are few assessment instruments available for international use and cross-cultural validation studies of these instruments are rare. The aim of the present study was to standardize the Spanish version of the Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS-ADD-10), a semi-structured interview for people with ID. METHODS: After a conceptual translation, feasibility (i.e. applicability, acceptability and practicality) and reliability analyses were carried out. The predictive validity of the PAS-ADD-10 CATEGO-5 codings was also examined (i.e. positive and negative predictive values). Four independent raters with wide-ranging experience in quantitative evaluation and psychiatric assessment of ID evaluated a sample of 80 subjects with ID and borderline intellectual functioning at the AFANAS occupational centre in Jerez, Southern Spain. The ICD-10 codes were used for psychiatric diagnosis. RESULTS: The practicality of the PAS-ADD-10 is limited because of the need for previous standardization of SCAN interviews. Nevertheless, its overall feasibility was judged adequate by raters and the PAS-ADD-10 was considered extremely useful for training. Test-retest and inter-rater reliability kappa values were moderate to high. The CATEGO coding showed limited validity because of overdiagnosis of anxiety disorders and underdiagnosis of mood and psychotic disorders (positive predictive value = 74%, negative predictive value = 76%). CONCLUSIONS: The PAS-ADD-10 is a useful tool for standard psychiatric assessment of people with ID; however, CATEGO codings show low validity and a series of modifications should be considered before this instrument is used extensively in Spain. In this regard, a study on the clinical usefulness of the PAS-ADD-10 in patients with ID and severe mental disorders has been undertaken.

Adolescent↗
PubMed1989

Hepatitis D virus infection in Illinois state facilities for the developmentally disabled. Epidemiology and clinical manifestations.

OBJECTIVE: To define the epidemiology and clinical manifestations of hepatitis D virus infection in an institutionalized population. DESIGN: A case-control study of hepatitis B carriers with and without serologic evidence of hepatitis D virus infection. Demographic, institutional, and medical data were obtained through questionnaires and chart review. Clinical status was assessed by liver function assays. SETTING: Thirteen Illinois state facilities for the developmentally disabled. PARTICIPANTS: Clients (238) who were hepatitis B carriers. RESULTS: Antibody to hepatitis D virus (anti-HDV) was detected in 71 of 238 (30%) hepatitis B carriers. Nine of thirteen facilities housed positive clients. Previous residence at one facility, designated B, was the strongest correlate of anti-HDV positivity; 85% of positive persons had lived there compared with 16% of negative controls (odds ratio 28.3 [95% CI, 13.2 to 60.7], P less than 0.001). Past hepatitis episodes were more common among anti-HDV-positive clients (37% compared with 7%) (odds ratio, 7.5 [95% CI, 3.0 to 19.1], P less than 0.001) and occurred mainly at facility B from 1950 to 1975. Liver function tests were infrequently abnormal among anti-HDV-positive clients. CONCLUSIONS: Results show widespread hepatitis D virus infection in our institutionalized population and suggest that transmission occurred mainly in the past at the overcrowded facility B. The low prevalence of laboratory evidence of chronic liver disease in the anti-HDV-positive clients may be explained by increased mortality among those originally infected from 1950 to 1975.

Acute Disease↗
PubMed2003

Brain plasticity, learning, and developmental disabilities.

This is a time of significant gains in methodological development for examining the developing human brain. New efforts are underway to unify the understanding of the development of brain anatomy with physiological, cellular and molecular processes that influence behavioral development. This special issue provides animal models of behavior and brain development, applications of noninvasive imaging and genetic methods to human brain development and behavior, and select reviews of how these models and methods have been applied to the examination of developmental disabilities. This issue reflects a sampling of current approaches to the study of brain plasticity, development and learning in typically and atypically developing humans and animals.

Brain↗
PubMed2002

Women with developmental disabilities: health and aging.

Major shifts have occurred in the world of disability that have profound implications for health-service provision. Although health researchers and clinicians have begun to address the health needs of women with disabilities, representation of older women with intellectual disabilities in health research and health-care practice remains inadequate. As the visibility of this group continues to grow through policies that support greater community integration and longevity, they and their families, professionals, and advocates will require more information about their health concerns, and appropriate health services and options. This article provides an overview of major issues of women with developmental disabilities within the areas of primary health care, aging, access to health services, and future directions in research and practice.

Aged↗
PubMedDate not supplied

Tardive dyskinesia associated with metoclopramide in persons with developmental disabilities.

Metoclopramide is an anti-emetic medication that has been associated with movement disorders such as extra-pyramidal reactions and tardive dyskinesia (TD). Reports of these reactions have been documented in the general population, but investigations of side effects in persons with mental retardation are scant. Given the high incidence of gastrointestinal disturbance in persons with mental retardation, and the popularity of this medication to treat such problems, these individuals could be at risk for developing movement disorders resulting from metoclopramide use. We compared incidence rates of TD over a 1-year period in developmentally disabled individuals taking either metoclopramide, typical antipsychotics, or no psychotropic medications (Table 1). Assessment was completed using the Dyskinesia Identification System--Condensed User Scale (DISCUS), a standardized measure of TD found to be reliable and valid for persons with mental retardation. No significant differences in DISCUS scores between the metoclopramide and antipsychotic treated groups were noted across four measurements taken during the course of 1 year. Additionally, no difference was found between these two groups for a number of participants who met criteria for probable TD on at least one of the DISCUS administrations. Comparisons between all three groups on one testing occasion revealed a significant difference between groups. The no psychotropic control group showed significantly less TD symptomology than the antipsychotic or metoclopramide groups.

Adult↗