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PubMed2002

What do you do when they grow up? Approaches to seizures in developmentally delayed adults.

Epilepsy and developmental disabilities (DD) often occur together but affect individuals differently and have a complex causal relationship. Most epilepsy in the population with DD is partial or symptomatic generalized. Seizures and antiepileptic drugs (AEDs) can further delay development, and the DD can complicate treatment and adjustment to epilepsy. Medical care and decision making require careful coordination of health care providers and the family, especially because of the trend for the patients to live in group homes. Behavioral and psychiatric disorders are difficult to diagnose but common in those with DD and epilepsy; psychiatric disorders are perhaps up to sevenfold higher in this group than in the general population. Psychotropic medications-antidepressants, anxiolytics (but use caution with benzodiazepines), antipsychotics, and stimulants-are appropriate for those with psychiatric disorders. Diagnostic difficulties may lead to undertreatment, and the motivation to lessen certain behaviors may lead to overtreatment. Because those with DD may be unusually sensitive to adverse effects of both seizures and AEDs, cognitive and behavioral side effects must be carefully monitored. Few relevant studies exist. For some patients, comorbid psychiatric disorders may be treated with one AED, such as carbamazepine, lamotrigine, or valproate. Phenobarbital and phenytoin may be inappropriate for those with epilepsy and DD. Studies have shown some success with oxcarbazepine (for partial and generalized epilepsy) and with adjunctive lamotrigine. For those on medication regimens, perhaps taking combinations of drugs for numerous years, queries about earlier attempts to reduce AEDs and gradual efforts to substitute less toxic mediations are worthwhile. Vagus nerve stimulation and epilepsy surgery for those with medically refractory epilepsy may be options after careful evaluation.

Adult↗

PubMed2025

A Systematic Review of Help-Seeking Barriers for Racial-Ethnic Minority Caregivers Accessing Autism Diagnostic and Intervention Services.

Caregivers play an essential role in early help-seeking and intervention for children with Autism Spectrum Disorder (ASD). Caregivers, therefore, provide a crucial role in helping to address the racial and ethnic disparity identified in accessing ASD intervention and diagnostic services (Bejarano-Martín et al., Journal of Autism and Developmental Disorders 50(9), 3380-3394, 2020). Unfortunately, racial-ethnic minority caregivers of children with autism (CCA) are less likely to contact a physician or healthcare professionals about their concerns and more likely to delay their contact to have their child evaluated (Zeleke et al., Journal of Autism and Developmental Disorders 49(10), 4320-4331, 2019). However, little evidence exists to explain why such a gap exists in the help-seeking behaviors between White and racial-ethnic minority CCA. To address this knowledge gap, we conducted a systematic literature review to identify articles that have studied barriers in help-seeking for racial-ethnic minority CCA. A broad literature search across four databases was conducted (i.e., PubMed, PsycINFO, Education Resources Information Center, and Child Development and Adolescent Studies). The coding team identified 17 articles on help-seeking barriers for racial-ethnic minority CCA. A thematic analysis was used to narratively synthesize the help-seeking barriers identified across these 17 studies. Four themes emerged from our findings: logistical barriers, provider competence, ASD literacy, and cultural stigma. We also provided clinical recommendations for healthcare providers working with families with racial-ethnic minority CCA.

Humans↗

PubMed1998

Reframing the meaning of disability to families: the embrace of paradox.

In our society, families turn to medical science and health practitioners for assistance when a family member becomes disabled. In the cases of chronic illnesses and developmental disabilities, health professionals may focus interventions on the disease processes, feeling unprepared to deal with the broader issues families struggle with in managing disability. In addition, collaboration between professionals and parents may be strained when family's discourse is viewed as unrealistic, overly emotional, exceedingly optimistic and confusing by professionals. Using in-depth case studies, this qualitative research examined the daily occupations and subjective well-being of six Mexican-origin mothers parenting children with disabilities. Emergent findings demonstrated that these mothers do express apparently contradictory emotions of grief and joy, hope and fear that influenced their subjective well-being. The meaning of the mothers' contrary statements was illuminated in a life metaphor, the embrace of paradox. The embrace of paradox was the management of the internal tension of opposing forces between loving the child as he or she was and wanting to erase the disability, between dealing with the incurability while pursuing solutions and between maintaining hopefulness for the child's future while being given negative information and battling their own fears. The tensions created by the paradox promoted an internal striving to maintain a tenuous hopefulness despite "crashes" in their maternal work, and promoted an extension of maternal skills working toward a hopeful life trajectory for the mother and her child. In the embrace of paradox mothers created a positive bias and regained a sense of control that fueled their optimism in maternal work.

Activities of Daily Living↗

PubMed1989

Behavior of the disabled child over sequential dental visits.

The behavior or manageability of 268 developmentally disabled children was recorded over a series of three visits. The behavior of these subjects was found to be consistent over the three visits regardless of the type of treatment rendered. Also, the prediction of the child's behavior made by the parent or care provider prior to treatment accurately reflected the behavior noted at each visit.

Adolescent↗

PubMedDate not supplied

Dental neglect: definition and prevention in the Louisiana Developmental Centers for patients with MRDD.

When dental services and appropriate use of restraints are used for persons who are severely and profoundly mentally retarded and developmentally disabled (MRDD), oral health is enhanced and dental neglect is controlled or even reduced. This paper defines dental neglect and examines the consequences to persons who are MRDD when appropriate restraints and preventive dental home care are not used. Oral health outcome assessment data of this MRDD population indicate the presence or absence of dental neglect. The outcome assessment measures the level of oral health within the developmental center. The Louisiana Department of Health and Hospitals (DHH) operates nine developmental centers, where approximately 2000 individuals with severe to profound mental handicaps reside. Two-thirds (66%) of this population are resistive to the delivery of clinical and preventive dental services. The responsibilities and roles of dental health professionals, long-term-care facility administrators, and direct service staff are discussed to help reduce dental neglect in these centers. For these individuals to receive quality and comprehensive dental care, appropriate use of restraint/physical hold is necessary. The Dental Health Resource Program (DHRP) developed guidelines for delivering preventive and clinical dental services to reduce confusion and misinterpretation of the definition and use of restraint in the Louisiana Developmental Centers (LADCs).

Dental Care for Persons with Disabilities↗

PubMed2004

Pervasive developmental disorders, psychiatric comorbidities, and the law.

Scattered reports propose that pervasive developmental disorders (PDDs) are risk factors for criminal behavior, yet the association between PDD and delinquent behavior is untrue for the majority of patients. However, individuals with PDDs may be at risk for legal trouble in the presence of comorbid psychopathology, and not solely on the basis of their developmental disability. This article analyzes theoretically the relationship between complex developmental disorders and delinquency with the hypothesis that the delinquent behaviors reported in it resulted from comorbid psychopathology and not as a direct consequence of a developmental disorder. A small series of patients diagnosed with a PDD and comorbid psychiatric illnesses whose admission to the hospital was precipitated by delinquent behavior is presented.

Adult↗

PubMed1994

Toward an equitable, universal caregiver policy: the potential of financial supports for family caregivers.

This article describes the fragmented array of financial supports for family caregivers currently provided by the federal government, the states, and private employers-provisions that range from direct payments to tax allowances, dependent-care tax credits, and unpaid leave. It highlights the uneven pattern of supports available to family caregivers of the elderly, the younger physically disabled, and children and adults with mental retardation and developmental disabilities that results from the welfare bias still shaping many current provisions. The article then critiques current policy and examines the potential for more explicit family caregiver financial support policy through pending initiatives of the Clinton Administration.

Adolescent↗

PubMed1994

The longitudinal assessment of congenitally infected infants.

Infants with congenital infections are at high risk for developmental disabilities. Because of this increased-risk status, they require comprehensive, longitudinal follow-up that should begin in the neonatal period with sensory, developmental, and neuromotor assessments as well as neuroradiological imaging. Reassessments of general development, sensory function, neuromotor abilities, and emerging language should be done during the early years, with cognitive, preacademic, and phonologic-awareness skills assessed during the preschool years. Serial evaluations of cognitive, academic, language, attention, neuromotor and sensory functions are needed through adolescence. Such surveillance of children with congenital infections is required to identify specific disabilities, to determine educational/intervention needs, and to investigate the total effects of congenital infection.

Adolescent↗

PubMed2005

The early development of stereotypy and self-injury: a review of research methods.

BACKGROUND: The origin and developmental course of stereotypic and self-injurious behaviour among individuals with developmental disabilities such as intellectual disability (ID) or pervasive development disorders such as autism is not well understood. METHOD: Twelve studies designed to document the prevalence, nature, or development of stereotypic and/or self-injurious behaviour in children under 5 years of age and identified as at risk for developmental delay or disability were reviewed. Comparisons were made with similar studies with typically developing children. RESULTS: It appears that the onset of naturally occurring rhythmic motor stereotypies is delayed in young at-risk children, but that the sequencing may be similar. A very small database, differences in samples, measures, and designs limited the degree to which comparisons could be made across studies. CONCLUSION: Future work is needed based on appropriately designed prospective comparison studies and uniform quantitative measures to provide an empirical basis for new knowledge about the early development of one of the most serious behaviour disorders afflicting children with ID and related problems of development.

Autistic Disorder↗

PubMed2004

Epidemiological study of cerebral palsy in the Maribor region.

BACKGROUND: The results of changes in perinatal health care in Maribor show a significant improvement in the past decade. Between 1995 and 1999, the survival chances of neonates with birth weight < 1000g also increased. With the appearance of new generations of extremely low-birth-weight infants, the risk of a higher incidence rate of various forms of neurosensory affection in the survivors increased. METHODS: We determined trends in the incidence of cerebral palsy (CP) in live birth and one-year survivor cohorts of children in the Maribor region for the decade 1988-1998. We identified children with CP in the Maribor region by record review as part of an ongoing developmental disability surveillance program conducted by the Centers for children with developmental disturbances at the Public Health Centers of the Maribor region (Maribor, Lenart, Ptuj, Ormoz and Slovenska Bistrica). A total of 123 cases of congenital CP were identified for the birth years 1988-1998. Data were analyzed according to birth weight, gestational age, subtypes of CP, and whether CP existed as an isolated disability or was accompanied by another disability. We compared the data for 1988-1993 with those of 1994-1998. RESULTS: There was a modest increase in the overall incidence of congenital CP from 3.7 to 4.3 per 1000 one-year survivors during the second part of the 1988-1998 decade. This trend was primarily attributable to an increase in CP in children with low or extremely low birth weight. There was an increase in the proportion of children who had both CP and other disabilities, most apparent in infants with birth weight > 2500g, from 53% in 1988-1993 to 62% in 1994-1998. For children weighing < 1500g, the proportion of children with spastic diplegic CP increased during the decade (62% in 1988-1993 and 78% in 1994-1998); for children weighing > 2500g, the proportion with spastic diplegia decreased (62% in 1988-1993 and 44% in 1994-1998). CONCLUSION: In a decade in which perinatal mortality was halved and survival among neonates with birth weight under 1500g increased to 90% in the second part of the decade, the average incidence of CP in the Maribor region increased slightly from 3.7 per 1000 survivors in 1988-1993 to 4.3 per 1000 survivors in 1994-1998. This increase was seen in infant survivors with birth weight < 1500g. Although no change was seen in the trends in CP incidence in low-birth-weight infants, a decrease was seen in infant survivors with birth weight > 2500g.

Birth Weight↗

PubMed2001

Children with disabilities: a longitudinal study of child development and parent well-being.

This Monograph presents the results of the Early Intervention Collaborative Study, a longitudinal investigation of the cognitive and adaptive behavior development of children with developmental disabilities and the adaptation of their parents, extending from infancy through middle childhood. The study was designed to generate and test conceptual models of child and family development and contribute to the knowledge base that informs social policy and practice. The sample for the investigation reported here consists of 183 children with Down syndrome, motor impairment, developmental delay and their families who were recruited at the time of their enrollment in an early intervention program in Massachusetts or New Hampshire. Data were collected at five time points between entry to early intervention and the child's 10th birthday. Home visits were conducted at each time point and included child assessments, maternal interview, and questionnaires completed independently by both parents. Trajectories in children's development and parental well-being were analyzed using hierarchical linear modeling. Predictor variables were measured at age 3 years when children were exiting early intervention programs. Children's type of disability predicted trajectories of development in cognition, social skills, and daily living skills. Children's type of disability also predicted changes in maternal (but not paternal) child-related and parent-related stress. Beyond type of disability, child self-regulatory processes (notably behavior problems and mastery motivation) and one aspect of the family climate (notably mother-child interaction) were key predictors of change in both child outcomes and parent well-being. A different aspect of the family climate--family relations--also predicted change in child social skills. Parent assets, measured as social support and problem-focused coping, predicted change in maternal and paternal parent-related stress respectively. The implications of these findings for both the science of child development and the policies and practices of developmental intervention are discussed.

Adaptation, Psychological↗

PubMedDate not supplied

Functional assessment and care of children with neurodevelopmental disabilities.

OBJECTIVES: To determine the relationship between pediatric assessment scores and ratings by parents and teachers regarding the amount of assistance required to complete basic activities of daily living; and to examine the relationship among scores for three commonly used pediatric assessments. DESIGN: Prospective correlational study. 205 children with developmental disabilities. The children ranged in age from 11 to 87 mo and included 72 females and 133 males of diverse socioeconomic and ethnic backgrounds. The children were evaluated by using the Battelle Developmental Inventory Screening Test, Vineland Adaptive Behavior Scales, Functional Independence Measure for Children (WeeFIM instrument), and the Amount of Assistance Questionnaire. RESULTS: The test-retest reliability coefficients for items on the Amount of Assistance Questionnaire were found to range from 0.82 to 0.97. Correlations among subscale scores and amount of assistance ratings were highest for the WeeFIM instrument and Battelle Developmental Inventory Screening Test. The highest correlation was between WeeFIM total rating and total amount of assistance rating (r = 0.91). CONCLUSION: Total WeeFIM instrument ratings and severity of disability were the best predictors of amount of assistance ratings provided by parents and teachers.

Activities of Daily Living↗

PubMed2005

[A cross-sectional study on prevalance and risk factors of disabilities in aged 0-6 years children in Beijing, China].

OBJECTIVE: To explore the epidemiological status of disabilities on vision impairment (VI), hearing loss (HL), mental retardation (MR), autism spectrum disorder (ASD) and motor disorder (MD) in aged 0-6 years old children in Beijing. METHODS: A total of 28 738 children under 7 years old were recruited from permanent residents of Beijing City by 2-phase cluster sampling. The screening procedure was 2-phase, and the diagnosis criteria were developed by the experts group. RESULTS: The overall disability rate was 11.45 per thousand (95 % CI:10.22-12.68). The false negative rates in HL and ASD were 0.14 per thousand, 0.80 per thousand, respectively, with a adjusted overall rate of 12.19per thousand. The prevalence rates of different kind disabilities from high to low were MR 9.31per thousand, MD 2.12per thousand, ASD 1.53per thousand (0.73per thousand before adjusted), HL 1.04per thousand (0.91per thousand before adjusted) VI 0.73per thousand. The results of logistic regression analysis showed that the possible non-biological risk factors for those disabilities were being male, living in city area, advancing age, mother with low education, mother engaged in labor work, and family with low income. It was primarily (49.62%) those prenatal factors other them the known suspected factors that causing disabilities. CONCLUSIONS: Compared with data from a countrywide study in 1987, the overall disability rate had a mild decrease (16.36%) with the most (56.85%) appeared in HL. It is indispensable to establish a disabilities surveillance program for the early recognition and intervention of children with disabilities. It is also crucial to clarify a disability definition for children combined with their characteristics of growth and development. We strongly recommended in developing a new definition on children' disabilities and establishing new criteria according to the contents of developmental disabilities of Center for Disease Control, USA.

Age Distribution↗

PubMed1994

Communication among preschoolers with and without disabilities in same-age and mixed-age classes.

Communicative interactions of preschool children with and without disabilities in classrooms of same or mixed ages were compared. Sixteen children with developmental disabilities (most with mild or moderate mental retardation) and 32 children without disabilities between 1.5 and 4.5 years of age were randomly assigned at the beginning of the school year to either a same- or mixed-age grouping of 6 children. They were observed 6 months later interacting with classmates in a standard free-play environment. Results showed that children in mixed-age classes took more turns in conversations with partners with disabilities than did children in same-age classrooms. They also received more turns from their partners with disabilities, which were more often responses than initiations in the mixed-age as compared to same-age classes. In contrast, during communicative interactions with partners without disabilities, children in both types of classes did not significantly differ in number or types of turns. Children of a similar developmental level also had similar communicative interaction styles.

Age Factors↗

PubMed2006

The impact of high- and low-preference stimuli on vocational and academic performances of youths with severe disabilities.

Pictorial and tangible paired-stimulus preference assessments were compared with 4 adolescents with developmental disabilities. In the tangible assessment, two stimuli were placed in front of the participant on each trial; in the pictorial assessment, two line drawings were placed in front of the participant on each trial. Approach responses were recorded for each assessment. The assessments generated similar preference hierarchies for all participants. Reinforcer assessments confirmed that response rates were higher when access to high-preference items was available than when low-preference items were available. Implications for assessing preferences and selecting items to be used in training programs are discussed.

Achievement↗

PubMed1995

High-risk children referred to an early-intervention developmental program.

Early-intervention programs for infants with developmental disabilities or with high-risk factors for such problems were first established in the United States more than 20 years ago. The benefits of such programs are generally recognized. This study describes the presenting problems of 698 children referred to an early-intervention program over a 15-year period (1975-1989). Medical condition groups rather than specific diagnoses are considered. The developmental progress of 464 children who attended the program for at least 6 months was determined by comparing their admission and discharge developmental quotients (DQ). Admission trends over time are noted and the value of intervention programs for young children with disabilities is discussed.

Birth Weight↗

PubMed2004

Disability and risk of school related injury.

OBJECTIVE: Approximately six million children with disabilities attend school in the United States. Cognitive and physical limitations may compromise their ability to handle environmental hazards and hence increase their risk for injury. The objective of this study was to describe the epidemiology of school related injury among children enrolled in 17 special education schools in one large, urban school district. DESIGN: Altogether 6769 schoolchildren with disabilities were followed up from 1994-98. Injury and population data were collected from pupil accident reports and existing school records. Associations were estimated through generalized estimating equations. RESULTS: A total of 697 injuries were reported for a rate of 4.7/100 students per year. Children with multiple disabilities had a 70% increased odds of injury compared with the developmentally disabled (odds ratio (OR) 1.7, 95% confidence interval (CI) 1.3 to 2.3). The physically disabled (OR 1.4, 95% CI 1.0 to 1.9) had a modest increased odds of injury. Cuts, bruises, and abrasions composed almost three fourths of all injuries; almost half of these injuries were to the face. Falls (34%) and insults by other students (31%) were the most common external causes. More than a fourth of injuries were sports related, and 21% occurred on the playground/athletic field. Injury patterns differed across disabilities. CONCLUSIONS: Although limited to one school district, the population studied is the largest cohort thus far of schoolchildren with disabilities. With this large study base, potentially high risk groups were identified and circumstances of injury described. This information is imperative for developing and improving school based injury prevention measures.

Accidental Falls↗

PubMed1996

Mentally disabled research subjects. The enduring policy issues.

Mentally disabled adults often serve as subjects in research on mental illness, developmental disabilities, dementia, and other conditions associated with mental impairment. Since US regulatory policy fails to resolve many ethical issues presented by such research, investigators and institutional review boards must determine the appropriate standards and procedures for studies involving adults with mental disabilities. Procedures for capacity assessment and information disclosure should enhance the autonomy of capable subjects and accurately identify subjects incapable of independent choice. Research teams should inform proxy decision makers of their ethical responsibities. Decisionally incapable adults objecting to research involvement should rarely be included in studies. Researchers, institutional review boards, advocacy groups, and federal officials should collaborate to improve evaluation of risks and potential benefits to decisionally incapable subjects. These groups should also seek consensus on appropriate risk limits in studies presenting no prospect of direct benefit to decisionally incapable subjects. Finally, subject populations should be represented in research planning and review activities.

Adult↗