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PubMed2000

Community services landscape in Canada: survey of developmental disability agencies.

A survey of support services for adults with development disabilities living in community settings in Canada was conducted. Information gathered on services and changes occurring in the community services landscape is discussed. Along with a diminution of government's role in funding and guiding service provision, Canada has witnessed the emergence of private-for-profit services, a relatively recent phenomenon in human services. Differences between the private-for-profit and nonprofit sectors are discussed, including a greater propensity in the nonprofit agencies to engage in advocacy and community education. Overall, evidence indicates that some services are beginning to incorporate individualized approaches to funding and support. Implications for government and for services of emergent patterns of support are noted.

Adult↗

PubMed1986

Etiology of developmental disabilities in Soweto, South Africa.

A retrospective review was undertaken of the records of 725 children who attended the neurodevelopmental clinic at the Baragwanath Hospital in Soweto, South Africa. Most children presented at an early age (less than 2-6 years). The etiological factors were prenatal, 4 per cent; perinatal, 41 per cent; postnatal, 21 per cent. Seventy-one per cent of the perinatal factors were a result of birth related problems in full-term infants; only 22 per cent of this group were represented by premature and low birthweight infants, contrasting sharply with data from industrialized centers. Almost a third of the postnatal causes were a result of acute intracranial infections. Another 13 per cent were a result of the metabolic consequences of acute gastroenteritis. Thus a high proportion of problems were preventable through provision of adequate nutrition, mass immunization campaigns, and adequate primary health care services including antenatal and obstetric management.

Child↗

PubMed2004

The perception of four basic emotions in human and nonhuman faces by children with autism and other developmental disabilities.

Children who experienced autism, mental retardation, and language disorders; and, children in a clinical control group were shown photographs of human female, orangutan, and canine (boxer) faces expressing happiness, sadness, anger, surprise and a neutral expression. For each species of faces, children were asked to identify the happy, sad, angry, or surprised expressions. In Experiment 1, error patterns suggested that children who experienced autism were attending to features of the lower face when making judgements about emotional expressions. Experiment 2 supported this impression. When recognizing facial emotion, children without autism performed better when viewing the full face, compared to the upper and lower face alone. Children with autism performed no better when viewing the full face than they did when viewing partial faces; and, performed no better than chance when viewing the upper face alone. The results are discussed with respect to differences in the manner that children with and without autism process social information communicated by the face.

Affect↗

PubMed2000

Does smoking by pregnant women influence IQ, birth weight, and developmental disabilities in their infants? A methodological review and multivariate analysis.

Neuropsychologists are asked frequently to address the issue of the cause of a variety of central nervous system problems that may affect higher cortical function. One such issue is the relationship of maternal smoking to adverse reproductive outcomes involving neocortical insult including mental retardation, learning disabilities, attention-deficit hyperactivity disorder, and other insults that may be related to prolonged hypoxic states in utero. The instant paper develops the issue of causation as a scientific inquiry, reviews several traditional, applicable models, and critiques these models. An additional model of motility is proposed and discussed. The issue of the relationship of maternal smoking to adverse reproductive outcomes is then addressed from a review perspective along with new empirical analyses, the latter demonstrating that researchers tend to draw causal conclusions independent of whether the respective design of their studies would support conclusions about the causation of an event. Causal conclusions in the absence of causal designs have often lead to incomplete and incorrect conclusions. It is necessary to match conclusions not only to the outcomes of a research project but also to its design and accompanying limitations.

Adolescent↗

PubMed2001

Case series: amantadine open-label treatment of impulsive and aggressive behavior in hospitalized children with developmental disabilities.

OBJECTIVE: A growing body of literature implicates interactions between glutamatergic and neostriatal dopaminergic neurotransmitter systems in the development and expression of impulsivity, hyperactivity, and stereotypy. Amantadine hydrochloride, a drug used in young children for influenza prophylaxis, acts both as an indirect dopamine agonist as well as an N-methyl-D-aspartate (NMDA) receptor antagonist. Thus an open clinical trial of this medication for the treatment of symptoms of impulse control disorders in children was performed. METHOD: A total of eight children (seven with neurodevelopmental disorders and all inpatients) with target behaviors refractory to other treatments were selected after parental informed consent. All patients were male and ranged in age from 4 to 12 years. Outcome was based on subjective consensus clinical ratings by the multidisciplinary treatment team. RESULTS: For four of the children, amantadine was associated with marked clinical improvement. In the remainder, improvement was also observed. Amantadine was well tolerated. CONCLUSIONS: On the basis of this experience, it appears that amantadine hydrochloride or related NMDA antagonists may warrant additional study in this and related populations.

Aggression↗

PubMed2002

Sense of coherence in parents of children with different developmental disabilities.

BACKGROUND: The aim of the present study was to test if Antonovsky's theory of sense of coherence can facilitate understanding: (1). individual differences in psychological adaptation in parents of children with intellectual disability (ID); and (2). why parents of children with ID generally experience higher levels of stress and depression than parents of children who develop normally. METHODS: Sense of coherence (SoC) and depression were assessed using the short SoC scale (13 items) and the Beck Depression Inventory in 216 families of children with ID and/or autism, and in 213 control families. RESULTS: It is argued that: (1). parents of children with ID with low SoC are at increased risk for developing depression compared to control parents with low SoC not experiencing this stressor; and (2). the life situation of parenting a child with ID may have a negative impact on parents' SoC levels that, in turn, will make them more vulnerable to experiencing stress and depression. CONCLUSION: The SoC theory is valuable in understanding individual differences in psychological adaptation in parents of children with ID.

Adaptation, Psychological↗

PubMed1995

A cost analysis of a case management system for infants with chronic illnesses and developmental disabilities.

Service coordination has long been a documented need of children with disabilities. The purpose of this study was to examine the costs associated with providing a comprehensive system of service coordination for hospitalized infants and toddlers with special health care needs and their families. Coordination costs were evaluated across seven functions including (a) determining eligibility for services, (b) identifying and arranging evaluations, (c) providing support to families, (d) making referrals to outside agencies, (e) exchanging information among service providers and families, (f) maintaining follow-up contact, and (g) determining discharge from the program. Results indicated that the service coordination function of providing family support was the most time-consuming task area, followed by the functions of exchanging information and maintaining follow-up contact. Costs also varied with the medical diagnosis and the child's age. Consistent with this variability, the diagnostic category and/or possibly the length of hospitalization was a better correlate of total cost of service coordination per child than was the number of months served. The complexity of the family's social and financial situation also appeared to be related to cost per month of service.

Case Management↗

PubMedDate not supplied

Maternal stress induces synaptic loss and developmental disabilities of offspring.

Mild prenatal stress affects the serotonergic system in the hippocampus of rat offspring. Pregnant rats were daily exposed to mild stress treatments (consisting of crowding and saline injection) during days 15 to 21 of pregnancy. Their offspring were assessed by a series of biochemical, histological and behavioral tests. On 35 days after birth, 5-hydroxytryptamine (5-HT) level was decreased by 17% (P < 0.05), whereas 5-hydroxyindolacetic acid (5-HIAA) level was increased by 18% (P < 0.05) in the offspring of prenatally stressed rats. The metabolic rate (5-HIAA/5-HT) was increased by 49% (P < 0.01). Synaptic density in the hippocampus of prenatally stressed offspring was also decreased by 32% (P < 0.0001) on postnatal day 35. There was no significant group difference in the spatial learning acquisition test of the Morris water maze; however, in the reversal task, prenatally stressed 5-week old rats spent more time than control animals searching for the platform of the pool. Escape latency in the cued test showed no significant difference. Together with data in our previous studies, that have shown 5-HT to facilitate synapse formation and maintenance in the central nervous system, synaptic loss is suggested to occur in relation to changes of 5-HT system in the hippocampus of prenatally stressed offspring. This may be associated with reported changes in behavior and learning ability in prenatally stressed offspring.

Animals↗

PubMed2000

Epilepsy surgery in children with developmental disabilities.

Surgery for treatment of medically uncontrolled epilepsy in children is now widely accepted with reported outcomes similar to those in adults. Epilepsy is reported in 8.8% to 32% of children with mental retardation (MR) and in up to half of children with severe retardation. There has been concern that patients with low IQ will experience unsatisfactory outcomes from epilepsy surgery and not achieve good seizure control. It is appropriate to reassess the prior bias against resective epilepsy surgery in children with MR in view of the changing criteria for potential candidacy for epilepsy surgery in infants and young children. There are three prerequisites for epilepsy surgery: (1) the epilepsy must be medically intractable; (2) the surgery must be feasible, that is, the epileptogenic zone can identified and safely resected; and (3) there is high likelihood of a satisfactory outcome as regards both the epilepsy and the patient's functional status. Patients with MR may have diffuse cerebral dysfunction and diffuse or multifocal epileptogenic regions. Appropriate patient selection is made possible through use of current technology that allows identification of lesions or areas of cerebral dysgenesis, aiding in identification of localized areas of epileptogenesis. Results from various series of patients with MR who have undergone resective surgery for epilepsy have shown that with careful presurgical evaluations, outcomes are similar between patients with normal IQ scores and those with low scores. Surgical protocols specifically for patients with MR and intractable epilepsy are required, including careful definition of desired outcomes.

Child↗

PubMed1994

Nutrition services for children with developmental disabilities and chronic illnesses in education programs.

OBJECTIVE: To determine the number of children attending school who require special nutrition services, types of nutrition services provided to children, involvement of registered dietitians in provision of nutrition services in the school setting, and continuing education needs of school nutrition personnel. DESIGN/SAMPLE: Pretested questionnaires were mailed to a national, systematic random sample of 600 school nutrition managers, 600 district school nutrition directors/supervisors, and 600 district special education program directors. Response rates were 32.7%, 46.2%, and 32.8%, respectively. STATISTICAL ANALYSES PERFORMED: Descriptive statistics were used to summarize data, including means, standard deviations, frequencies, and percentages. RESULTS: A large percentage of school nutrition managers (46%) reported that they served no children with special food and nutrition needs. Special food and nutrition needs most frequently encountered by all groups included food allergy, food intolerance, diabetes, and conditions with which feeding problems are associated. The skills of dietitians were used by 23% of school nutrition managers, 21% of district school nutrition directors/supervisors, and 15% of special education program directors. Continuing education needs were greatest for the areas of assessing liability, calculating macronutrient content of menus, modifying menus, and understanding the physical and emotional needs of children with special needs. APPLICATIONS/CONCLUSIONS: Communication between nutrition service providers and special education providers needs to be strengthened. A need exists to include nutrition in Individualized Education Programs for children in special education. Many opportunities are available for registered dietitians to provide consulting services for school nutrition programs related to special needs.

Child↗

PubMed2005

Subtelomere FISH analysis of 11 688 cases: an evaluation of the frequency and pattern of subtelomere rearrangements in individuals with developmental disabilities.

BACKGROUND: Subtelomere fluorescence in situ hybridisation (FISH) analysis has increasingly been used as an adjunct to routine cytogenetic testing in order to detect small rearrangements. Previous reports have estimated an overall abnormality rate of 6%, with a range of 2-29% because of different inclusion criteria. METHODS: This study presents data compiled from 11 688 cases referred for subtelomere FISH testing in three clinical cytogenetic laboratories. RESULTS: In this study population, the detection rate for clinically significant subtelomere abnormalities was approximately 2.5%, with an additional 0.5% detection of presumed familial variants. Approximately half of the clinically significant abnormalities identified were terminal deletions, the majority of which were de novo. Most of the remaining cases were unbalanced translocations between two chromosomes or two arms of the same chromosome. Approximately 60% of the unbalanced translocations were inherited from a parent carrying a balanced form of the rearrangement. Other abnormalities identified included tandem duplications, apparently balanced translocations, partial deletions, and insertions. Interestingly, 9 cases (0.08%) were found to have interstitial deletions of non-telomeric control loci, either BCR on 22q or PML on 15q. The most common clinically significant imbalances found were deletions of 1p, 22q, 4p, 9q, 8p, 2q and 20p. The most common familial variants were a deletion or duplication of 10q, deletion of 4q, deletion of Yq, and duplication of X/Yp onto Xq. CONCLUSIONS: This study of subtelomere rearrangements is a 20 fold increase in number over the previously reported largest study and represents an unbiased analysis of subtelomere rearrangements in a large, unselected patient population.

Adolescent↗

PubMed2002

Environmental pollutants and disease in American children: estimates of morbidity, mortality, and costs for lead poisoning, asthma, cancer, and developmental disabilities.

In this study, we aimed to estimate the contribution of environmental pollutants to the incidence, prevalence, mortality, and costs of pediatric disease in American children. We examined four categories of illness: lead poisoning, asthma, cancer, and neurobehavioral disorders. To estimate the proportion of each attributable to toxins in the environment, we used an environmentally attributable fraction (EAF) model. EAFs for lead poisoning, asthma, and cancer were developed by panels of experts through a Delphi process, whereas that for neurobehavioral disorders was based on data from the National Academy of Sciences. We define environmental pollutants as toxic chemicals of human origin in air, food, water, and communities. To develop estimates of costs, we relied on data from the U.S. Environmental Protection Agency, Centers for Disease Control and Prevention, National Center for Health Statistics, the Bureau of Labor Statistics, the Health Care Financing Agency, and the Practice Management Information Corporation. EAFs were judged to be 100% for lead poisoning, 30% for asthma (range, 10-35%), 5% for cancer (range, 2-10%), and 10% for neurobehavioral disorders (range, 5-20%). Total annual costs are estimated to be $54.9 billion (range $48.8-64.8 billion): $43.4 billion for lead poisoning, $2.0 billion for asthma, $0.3 billion for childhood cancer, and $9.2 billion for neurobehavioral disorders. This sum amounts to 2.8 percent of total U.S. health care costs. This estimate is likely low because it considers only four categories of illness, incorporates conservative assumptions, ignores costs of pain and suffering, and does not include late complications for which etiologic associations are poorly quantified. The costs of pediatric environmental disease are high, in contrast with the limited resources directed to research, tracking, and prevention.

Asthma↗

PubMedDate not supplied

[Brainstem acoustic evoked potentials in children with developmental disabilities--a useful tool for differential diagnosis].

In a retrospective study brainstem acoustic evoked potentials (BAEP) were evaluated in 222 children with psychomotor retardation or dysmorphic signs. Registrations were done, when no clear response to acoustic stimuli of medium intensity (60-80 dBA) could be obtained during clinical examination. Only 118 children (53%) had normal BAEP. 50 patients (22%) suffered from hearing impairment. 39 children (17%) showed disturbances of neuronal conduction. In 15 cases (7%) a combination of both conditions occurred. The mean age of our children with hearing impairment was 33.1 months, no case having been diagnosed before. In 57% the impairment was of the conductive type with an amount of less than 40 dB nHL This type was predominant in children with skeletal dysplasias (43%), chromosomal aberrations (43%) and malformation syndromes (40%). Severe hearing deficits of the sensorineural type with more than 69 dB nHL were found in children with malformation syndromes (28%), perinatal injuries (23%) and cns malformations (16%). As far as reference data were available, the hearing impairment in the BAEP was confirmed in 92% by our pedaudiologists. As a consequence hearing aids were first prescribed in 10 children, their medium age being 33.6 months. In 18 cases grommets were inserted. 9 children required paracentesis and 4 adenotomy. Disturbances of neuronal conduction with increased interpeak latencies and deformed potentials were predominantly found in the group of children with neurometabolic diseases (67%) and cns malformations (32%). Early diagnosis of hearing impairment in children with psychomotor retardation remains a problem as it is in the general population. More attention in clinical examination and appropriate screening is necessary. BAEP provide a powerful tool for hearing screening and additional information for differential diagnosis especially in children with neurometabolic diseases.

Adolescent↗

PubMed2003

Bridging the equity gap: health promotion for adults with intellectual and developmental disabilities.

Health is influenced by political, economic, social, cultural, environmental, behavioral and biological conditions--either positively or negatively. Health promotion aims to make these factors more favorable through health advocacy. Advocating for physical, mental, and social health requires that individuals with I/DD have opportunities to identify and realize their aspirations, develop the capacity to satisfy their needs, and possess the ability to adapt and/or cope with the environment. Because health is both an individual and a social responsibility, effective health promotion strategies must incorporate linkages between health and development, particularly for vulnerable and disadvantaged groups where deprivation in health and economic resources exist simultaneously and reinforce each other [6]. Incorporating health and development at the core of health promotion activities addresses issues of poverty, poor health, and unemployment, while accounting for social, cultural and economic differences. Health promotion enables people with I/DD to achieve their health goals by ensuring equal opportunities and resources. This includes having supportive environments, access to information, and life skills and opportunities to make healthy choices. People cannot achieve their health goals unless they can control health determinants. Health promotion efforts require coordinated action from all interested groups (e.g., government entities, health and other social and economic sectors, nongovernmental and voluntary organizations, local authorities, industry and media), including individuals, families and communities. Community-based health promotion emphasizes community participation, along with empowerment of community members to address inequities and increase control over their health [3]. Individual satisfaction and participation are critical components in community coalitions that are providing health promotion programs. Moreover, community leadership, shared decision-making, linkages with other organizations, and organizational climate can predict satisfaction, participation, and planning. Health becomes a resource for everyday life when individuals with I/DD are empowered and can participate in health promotion activities that are based in their community.

Adolescent↗

PubMed2002

[Complexity of help to children with developmental disabilities in the context of the establishment of Early Rehabilitation Services].

During of the years of restoration of independence of Lithuania a new model of services for children with developmental disorders was designed by Vilnius Child Development Center and Clinic of Social Pediatrics and Child Psychiatry, Vilnius University, and started to be implemented throughout all the country. Analysis of current situation of early intervention services in Lithuania is presented. The study was carried at the four randomly selected early intervention services. Patients and specialists of early intervention services together with patients and specialists of polyclinics where the services are located were interviewed using the questionnaires developed by the authors. Complexity of views of services providers and consumers together with the aspects of distribution of the information about the early intervention services and cooperation of early intervention services with other professionals was analysed. Data of the focus groups discussions with the specialists of early intervention services and analysis of the case histories are also presented. The data reflected the problems of the process of establishing the new services, period of creation and difficulties of working with children having severe disturbances and their families. Diagnosing and treatment of motor disabilities were dominating while emotional and behavioral disorders were underdiagnosed, case histories lacked complexity of the biopsychosocial view. Recommendations for the ways for future development are provided stressing the importance of seeking more complex interventions including psychosocial aspects of child development and family counseling.

Child↗

PubMed2005

Alternative developmental evaluation paradigm in centers for developmental disabilities.

The interdisciplinary evaluation has been a well-established process in centers for neurodevelopmental disabilities, but it is costly and may generate long waiting lists that can delay early diagnosis and treatment. An alternative evaluation paradigm was designed, using a specific screening approach, to improve use of staff time without compromising quality of care. An alternative model (AM) was designed, where a pre-designed selection process was used to sort new patients for either a comprehensive evaluation or a screening procedure, addressing medical, developmental and social issues with the additional use of developmental screening tools. A routine clinic (RC) comprehensive evaluation of each referral, was compared to the AM for waiting time, charges for patients, reimbursement to the center, and parents' and professional trainees' satisfaction. Results showed that waiting time for the screening procedure (10.3 weeks) was significantly reduced (RC 20.6 weeks). Charges for the screening procedure were significantly lower, but center revenues were not affected. Caregivers' satisfaction was maintained and trainees' satisfaction was high. The AM identified medical concerns sooner and encouraged collaboration with community resources. This study supports the use of an Alternative Developmental Evaluation paradigm for more effective use of interdisciplinary teams in centers for neurodevelopmental disabilities.

Child↗

PubMed1994

Chronic overeating without obesity in children with developmental disabilities: description of a new syndrome.

Reported excessive eating was examined in children referred for developmental delay to our multidisciplinary diagnostic center and cause hypotheses were generated. Thirteen children were evaluated prospectively using a nutrition assessment, The Eating Behavior Questionnaire, the Achenbach Child Behavior Profile, and their multidisciplinary developmental evaluation. The children ate excessively but were not obese. Commonalities included being in foster care, prenatal drug exposure, and abnormally withdrawn and/or aggressive behavior. Nonobese hyperphagia appears to require emotional and behavioral assessment and dietary management. Hypotheses include prenatal drug exposure and a possible causal association with emotional and behavioral problems.

Adolescent↗

PubMed1985

Functions of haptic perceptual activity in persons with visual and developmental disabilities.

The paper reviews the author's research on the effects of perceptual experience and cognitive-developmental factors on haptic scanning behavior of blind and/or mentally retarded children and adults. The results indicate that haptic information may be gathered more efficiently by one scanning style over another, and differences in efficient style usage may vary positively with haptic perceptual experience. However, accurate processing of haptic information may depend on the availability of cognitive structures that in turn influence scanning style selection and utilization, rather than directly on scanning styles themselves.

Adolescent↗