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PubMed2001

Prevalence of mental retardation and developmental disabilities: estimates from the 1994/1995 National Health Interview Survey Disability Supplements.

In 1994 and 1995, the National Health Interview Survey included a Disability Supplement (NHIS-D) to collect extensive information about disabilities among individuals sampled as part of annual census-based household interview surveys. Here we describe the development and application of operational definitions of mental retardation and developmental disabilities to items in the NHIS-D to estimate prevalence. In our analyses, we estimate the prevalence of mental retardation in the noninstitutionalized population of the United States to be 7.8 people per thousand (.78%); of developmental disabilities, 11.3 people per thousand (1.13%); and the combined prevalence of mental retardation and/or developmental disabilities to be 14.9 per thousand (1.49%). Differences in prevalence estimates for mental retardation and developmental disabilities and among people of various ages are explored.

Adolescent↗

PubMed1987

Developmental influences in teaching language forms to individuals with developmental disabilities.

The purpose of this experiment was to test the assumption that the sequencing of language goals for individuals with developmental disabilities should be based on the normal developmental sequence. In a series of two studies, phonetic sounds and syntactic structures representing different levels of normal development were taught to individuals with developmental disabilities. The results showed that (a) the majority of earlier emerging forms were acquired in fewer trials, (b) there was never an instance when the later emerging form was acquired and the earlier emerging form was not, and (c) the majority of earlier emerging forms were correctly produced at higher levels than the later emerging forms during probe sessions conducted 6 months after training. The results are discussed in terms of their implications for the development of language curricula for individuals with developmental disabilities.

Adolescent↗

PubMedDate not supplied

Associations between fracture incidence and use of depot medroxyprogesterone acetate and anti-epileptic drugs in women with developmental disabilities.

PURPOSE: We sought to evaluate any association between incidence of osteoporotic fractures and use of depot medroxyprogesterone acetate (DMPA) and/or anti-epileptic drugs (AEDs) among women and girls with developmental disabilities. METHODS: Cross-sectional population-based observational study of all noninstitutionalized females with developmental disabilities age >/=13 who received fee-for-service Medicaid in Washington State during 2002 (n = 6,773), using administrative data. MAIN FINDINGS: In a sample of 6,773 females, 140 women (2%) had an osteoporotic fracture during 2002. Among 340 users of DMPA, 13 (3.8%) had an osteoporotic fracture with an odds ratio of 2.4 (95% confidence interval [CI], 1.3-4.4) for fracture compared to nonusers. Among 1,909 users of AEDs, 60 (3.1%) had an osteoporotic fracture with an odds ratio of 1.9 (95% CI, 1.3-2.6) for fracture compared to nonusers. We controlled for use of drugs (DMPA or AEDs), age and race (as white or other racial and ethnic groups). CONCLUSIONS: Use of either AEDs or DMPA by women with developmental disabilities is associated with significantly increased incidence of fracture. Women and girls who have developmental disabilities may be poor candidates for DMPA use owing to increased risk of fractures. Further research is indicated to 1) determine the specific risks profile of DMPA for this population, 2) explore alternative means of managing significant menstrual problems and contraceptive needs in this population, and 3) screen current and previous users of DMPA and chronic users of AEDs for osteoporosis risk, regardless of age.

Adolescent↗

PubMed2002

Research and literature on sex offenders with intellectual and developmental disabilities.

The present paper sets out to review the literature on several aspects of sex offenders with intellectual and developmental disabilities, including the relationship between sex offending and developmental disabilities, the prevalence and characteristics of sex offenders in this client group, assessment, treatment, and outcome of intervention. Several important variables were identified as influencing the disparate results found in different prevalence studies. These include variations in inclusion criteria, differences in the source of the sample, differences in determination of IQ, the impact of deinstitutionalization, and the effect of changing social and penal policies in the area where studies have been conducted. Although some studies have suggested an increasing incidence, there is no clear evidence for the over- or under-representation of people with developmental disabilities amongst sex offenders. One of the main methodological flaws in several reports listing the characteristics of sex offenders is that considerations are based on clinical samples. Therefore, there is no control group to show that these characteristics do not exist in other samples of individuals with intellectual disability (ID). It does appear that sex offenders with ID are more likely to commit offences across categories and to be less discriminating in their victims. There may also be an association with sexual abuse in childhood. The primary issue considered has been assessment of competency, in that people with ID are considered to be disadvantaged by the criminal justice process. While several authors have delineated the important areas for assessment, there are few assessment measures with robust psychometric properties. Pharmacological, behavioural, educational and cognitive treatments are reviewed. Several comprehensive treatments which include all of the aforementioned methods are also considered. Although most studies do not report particularly positive outcomes, several authors have found better outcomes with treatment lasting at least 2 years.

Cross-Sectional Studies↗

PubMed2002

Increased mortality in children and adolescents with developmental disabilities.

A population-based cohort of 10-year-old children with mental retardation, cerebral palsy, epilepsy, hearing impairment or vision impairment, who were ascertained at 10 years of age in a previous study conducted in metro Atlanta during 1985-87, was followed up for mortality and cause of death information. We used the National Death Index to identify all deaths among cohort members during the follow-up period (1985-95). We estimated expected numbers of deaths on the basis of actual age-, race- and sex-specific death rates for the entire Georgia population for 1989-91. The objective was to quantify the magnitude of increased mortality and evaluate the contribution of specific disabilities to mortality among children and adolescents with one or more of five developmental disabilities. A total of 30 deaths were observed; 10.1 deaths were expected, yielding an observed-to-expected mortality ratio of almost three to one. The numbers of observed deaths exceeded those of expected deaths, regardless of the number of disabilities present, but the ratios were statistically significant (at the 95% confidence level) only in children with three or more co-existing disabilities. In general, the magnitude of the mortality ratios was directly related to various measures of the severity of the person's disability. An exception to this pattern was the elevated mortality from cardiovascular disease among cohort members with isolated mental retardation (three observed deaths vs. 0.2 expected). The specific underlying causes of death among other deceased cohort members included some that were the putative cause of the developmental disability (e.g. a genetic syndrome) and others that could be considered intercurrent diseases or secondary health conditions (e.g. asthma). Prevention efforts to decrease mortality in adolescents and young adults with developmental disabilities may need to address serious conditions that are secondary to the underlying disability (i.e. infections, asthma, seizures) rather than towards injuries, accidents and poisonings, the primary causes of death for persons in this age group in the general population.

Adolescent↗

PubMed1991

Erosions of the angelchik prosthesis in pediatric-sized developmentally disabled patients.

We reviewed case histories of 40 pediatric-sized developmentally disabled patients who had previously participated in a study comparing the Nissen fundoplication with the Angelchik prosthesis for the surgical treatment of severe gastroesophageal reflux. Five of these patients had experienced erosions of the prosthesis into the gastrointestinal tract. These erosions were diagnosed between 2 years and 2 years 8 months following surgical insertion of the device. Erosions were associated with a variety of symptoms including vomiting, increasing discomfort, melena, anemia, coffee ground gastric residuals, and repeated small bowel obstructions. In no case was erosion associated with the development of peritonitis. Despite the documented advantages of the Angelchik prosthesis, the 12.5% erosion rate in this patient population is excessive. We recommend that use of the Angelchik prosthesis is not advisable in pediatric-sized developmentally disabled patients.

Adolescent↗

PubMed1988

The role of home care service in family care of developmentally disabled children: an exploratory study.

Recent concern about the needs of developmentally disabled children living at home has led to increased attention to family support programs. Home care service is one family support option which should be viewed as a basic fundamental support strategy. An exploratory study of a small number of families caring for developmentally disabled children in New York City indicates that publicly-funded home care produces a great number of benefits for this special population.

Adolescent↗

PubMed2000

Smith-Lemli-Opitz syndrome and other sterol disorders among Finns with developmental disabilities.

Smith-Lemli-Opitz syndrome (SLOS) is an inherited disorder of cholesterol metabolism in which 7- and 8-dehydrocholesterols are accumulated in blood and tissues. Diagnosis of SLOS and other disorders in cholesterol metabolism (eg, cerebrotendinous xanthomatosis, phytosterolemia, desmosterolosis, and X-linked dominant Conradi-Hünermann-Happle syndrome) can be performed by gas-liquid chromatographic analysis of serum sterols. To elucidate their involvement in developmental disability, we evaluated serum sterols in two study groups: developmentally disabled subjects in long-term care (N = 322) and newborns and young children (N = 49) with features of SLOS in the Finnish population of 5 million. Only 1 SLOS case (type II) was found from among the 49 children. Seven additional adult cases (type I) with a wide range of clinical features and the serum sterol abnormalities characteristic of SLOS were detected from among the developmentally disabled subjects. The frequency of SLOS in the latter group was relatively high (7 in 322). No other hereditary sterol disorders were found, but two subgroups with low serum cholesterol precursor sterols and high serum plant sterols were identified. Several subjects, including the 7 SLOS patients, used ample medication and had abnormalities in serum sterol concentrations. Thus, among the subjects taking melperone, a high serum delta8-cholestenol level suggests an interference by the drug with cholesterol synthesis. Our results emphasize the importance of analyzing the serum sterols of developmentally disabled subjects to diagnose SLOS and of finding putative undiagnosed disorders in sterol metabolism associated with these clinical conditions.

Adolescent↗

PubMed2001

Inquiry cantos: poetics of developmental disability.

Postmodern thought is increasingly critical of foundations central to modern, positivist research into the lives of people labeled as having so-called developmental disabilities and mental retardation. This approach has brought about changes in how developmental disability is both understood and, ultimately, created. Responding to what has been called the postmodern turn, some disability studies scholars are choosing to represent their work in alternative textual formats, including poetry and fiction. These texts, representing multiple subjectivities, offer ways to explicate, problematize, and reconstruct new ways of understanding so-called developmental disability that are complex and plural. Examples of alternative research texts are provided from a recent qualitative research project with self-advocates and their construction of choice, control, and power.

Child↗

PubMed2002

Development and implementation of a program for offenders with developmental disabilities.

The need for a comprehensive range of services for persons with mental retardation and other developmental disabilities who enter the criminal justice system has been well-established. However, such services are unavailable to most offenders with developmental disabilities. Here we describe the services of one agency devoted to this population. Established in 1990, this agency has provided education and training to over 1,500 professionals, answered over 1,000 information and referral questions, and provided direct services to over 600 offenders with developmental disabilities. Recommendations for developing and implementing similar programs are offered. Areas addressed include assessing need, funding, composition of boards of directors, program philosophy, selection of program services, staffing, the referral process, and program evaluation.

Adolescent↗

PubMed2006

Supporting aging caregivers and adults with developmental disabilities in future planning.

A peer support intervention was developed to support aging caregivers and adults with developmental disabilities in planning for the future. The intervention consisted of a legal/financial training session followed by five additional small-group workshops. Pretest and 1-year follow-up surveys were conducted with 29 families participating in the intervention and 19 control families. Outcome measures included future planning activities, caregiving appraisals, discussion of plans with individuals who have developmental disabilities, and choice-making of individuals with developmental disabilities. The intervention significantly contributed to families completing a letter of intent, taking action on residential planning, and developing a special needs trust. Caregiving burden significantly decreased for families in the intervention and daily choice-making of individuals with disabilities increased.

Adolescent↗

PubMed2002

Significance of microcephaly among children with developmental disabilities.

To assess the clinical impact of microcephaly among children with developmental disabilities, we reviewed the charts of 1393 consecutive patients from birth to 5 years of age referred to our child development center. Comparisons were made between normal and low IQ microcephalic patients and between children with cerebral palsy with and without small head circumference. Microcephaly was detected in 15.4% of patients. Although mental retardation was more common among microcephalic children (P < .001), almost half had normal intelligence. Prematurity (P < .001), perinatal asphyxia (P < .001), small for gestational age (P < .001), respiratory distress syndrome (P < .001), and brain hemorrhage (P < .001) were associated with microcephaly. Hypotonia (P < .001) and spasticity (P < .001) were the most common neurologic findings. Cerebral palsy (P < .001), growth retardation (P < .001), epilepsy (P < .001), and strabismus (P < .001) were the main associated diagnoses found. Mental retardation was significantly more common among microcephalic patients with cerebral palsy than among normocephalic ones (P < .0004). Microcephaly is common among children evaluated for developmental disabilities. Many of these patients have normal or borderline IQ. Of several perinatal conditions associated with later microcephaly, respiratory distress syndrome and intraventricular hemorrhage show the strongest correlation. Mental retardation is not a risk factor for other neurologic complications in microcephalic children. However, in children with cerebral palsy, microcephaly is a risk factor for mental retardation.

Asphyxia Neonatorum↗

PubMed2002

Snoezelen: an overview of research with people with developmental disabilities and dementia.

PURPOSE: This paper was to provide an overview of the research studies on snoezelen with people with developmental disabilities and dementia. METHOD: Computerized and manual searches were carried out to identify the aforementioned studies. Within-session, post-session, and longer-term effects of snoezelen were examined. RESULTS AND CONCLUSION: Twenty-one research studies were identified, 14 concerning people with developmental disabilities and seven people with dementia. Of those studies: 14 reported positive within-session effects; four positive post-session effects; and two positive longer-term effects. These findings were discussed in relation to: (1) methodological aspects (weaknesses) of the studies; (2) the cost of arranging a snoezelen programme and possibilities of reducing the range of stimuli available in the programme; and (3) some research issues for advancing the understanding and effectiveness of intervention programmes with people with developmental disabilities and dementia.

Child↗

PubMed1989

Indicators of impact of services on persons with developmental disabilities: issues concerning data-collection mandates in P.L. 100-146.

Public Law 100-146 requires the Administration on Developmental Disabilities to report to the Congress in 1990 on the status of services to persons with developmental disabilities. Considerable effort has been devoted by the National Association of Developmental Disabilities Councils to providing a national methodology for characterizing state services and for surveying consumer satisfaction with these services; but these data alone will not be sufficient to adequately characterize all variables required by the 1990 report. Definitional, conceptual, and methodological issues related to measurement of scope and extent of services, documenting eligibility and accessibility, and estimating the effectiveness of services was reviewed. A framework was suggested for integrating data-collection with consumer satisfaction survey efforts already underway.

Consumer Behavior↗

PubMed1983

Developmental disabilities program--Department of Health and Human Services. Second notice of proposed rulemaking.

The Administration on Developmental Disabilities in the Office of Human Development Services rescinds the Notice of Proposed Rulemaking (NPRM) published May 9, 1980 (45 FR 31006) and proposes new regulations. This second NPRM implements the Developmental Disabilities Assistance and Bill of Rights Act of 1978, as amended. These proposed rules do not include requirements for the University Affiliated Facilities (UAF) except for the proposal of an assurance regarding the rights of persons with developmental disabilities. The regulations for the UAF program are found at 45 CFR Part 1388.

Persons with Disabilities↗

PubMed1997

Development of a test battery (NPM-X) for neuropsychological and neuromotor examination of children with developmental disabilities or mental retardation. A theoretical and clinical study.

Biological and behavioural diagnosis often do not provide information on functional competence. This is, however, of utmost importance in planning services as well as in research on treatment effects for children with developmental disorders. For school-aged children neuropsychological assessment has proved its value in this respect. For children of chronological age (CA) below 5-7 with specific developmental disabilities, and for children with severe mental retardation there has been a lack of applicable test batteries. This thesis presents a new test battery for neuropsychological and neuromotor examination, NPM-X, for these two groups of children. The first part of the thesis reviews available medical and psychological tests and assessment procedures with respect to applicability and relevance for neuropsychological assessment to children with mental retardation and mental age (MA) below 7. The second part describes the theoretical background and the content of the new test battery. The methodology for testing these children, who due to their age and/or their developmental disabilities often co-operate poorly, is described. Scoring categories, specifically developed to enable a detailed and differentiated description of the child, are presented. Because of the instability of the behavioural function in early age as well as in cases of severe disability, the scoring system records both the child's optimal functional capacity and inconsistencies in behaviour. For the purpose of planning treatment and training according to the child's resources as well as dysfunctions, two different functional profiles are provided. In the normative functional profile the child's functional level is compared to normal expectations for the child's CA, and in the ideographic functional profile the child's function in each area is compared to the child's average functional level. In the third part of the thesis the reliability results are presented and discussed. A pair of trained M.D.s, or psychology or special education Ph.D.s examined 110 children in a blind design. The study showed satisfactory interrater and test-retest reliability. In the fourth part current validation theory is reviewed before content and construct validity for the test battery is discussed. A concurrent criterion validation study is presented as well. Assessments available in the psychological and psychiatric records (PPR) of 35 children with CA below 7 were compared to test results obtained with NPM-X. The comparison showed high agreement in areas of function assessed both by PPR and NPM-X. In addition, NPM-X provided more information about the child's functional capacity, of relevance for the diagnostic appraisal as well as for the treatment of the child. It is concluded that a reliable and valid test battery for neuropsychological and neuromotor developmental assessment has showed its applicability and clinical utility for children with specific developmental disabilities and CA < 7 and for children with general developmental disabilities up to CA 12-13 but with MA < 7.

Adolescent↗

PubMed1989

Nutritional status of institutionalized children and adolescents with developmental disabilities.

The relationship was explored between anomalies associated with developmental disabilities and nutritional status of institutionalized children and adolescents who received comprehensive interdisciplinary services. Variables included dietary intake, serum laboratory values, anthropometric measurements, feeding skills assessment, and clinical assessment. Mean intakes of nutrients were greater than 67% of Recommended Daily Allowances. Laboratory values were within normal ranges with the exceptions of serum ferritin, which was borderline or below normal in 46% of the males and 55% of the females, and alkaline phosphatase, which was elevated in 70% of residents receiving anticonvulsants. Energy intake was highest in residents with adequate feeding skills, followed by nonfeeders and feeders requiring behavior management. Subjects had greater triceps skinfold and lower mid-arm muscle circumference and weight measurements as compared to reference data. Findings of this study suggest that these developmentally disabled children and adolescents who received comprehensive interdisciplinary nutritional services, in general, are adequately nourished and have nutrient intakes that meet the RDA requirements.

Activities of Daily Living↗

PubMed1990

AIDS and state developmental disability agencies: a national survey.

A survey of state developmental disability agencies was undertaken in October 1987 regarding AIDS policy development, education, and training and service provision. Of 44 states responding to the 27-item questionnaire, only 21 had formal AIDS policies. Policies varied considerably from state to state. Twenty-five of the responding states include information on AIDS in their staff training curriculum, with such training more likely to be provided to institutional staff than to community-based staff. Only 10 states reported AIDS prevention to be part of their client training programs, with training more likely to be found in institutional settings. Eleven states reported HIV positive cases, with such cases found more often in institutions than in community settings. Several states reported some type of segregation of HIV positive individuals. Policies, educational programming, and services to meet the special needs of persons with developmental disabilities are called for.

Acquired Immunodeficiency Syndrome↗