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PubMed2004

Sex differences in developmental reading disability: new findings from 4 epidemiological studies.

CONTEXT: An influential article published in 1990 claimed that the increased rate of reading disability in boys was a consequence of referral bias. OBJECTIVES: To summarize the history of research on sex differences in reading disability and to provide new evidence from 4 independent epidemiological studies about the nature, extent, and significance of sex differences in reading disability. DESIGN, SETTING, AND PARTICIPANTS: The Dunedin Multidisciplinary Health and Development Study comprised 989 individuals (52.1% male) in a cohort born between April 1972 and March 1973 in Dunedin, New Zealand, and followed up from age 3 years; reading performance and IQ were assessed at ages 7, 9, and 11 years using the Burt Word Reading Test and the Wechsler Intelligence Scale for Children-Revised (WISC-R), respectively. The Christchurch Health and Development Study comprised 895 individuals (50% male) in a prospectively studied cohort born in the Christchurch, New Zealand, region during a 4-month period in 1977; reading performance and IQ were assessed at ages 8 to 10 years using the Burt Word Reading Test and the WISC-R. The Office for National Statistics (ONS) Study comprised a UK nationally representative sample of 5752 children (50.1% male) aged 9 to 15 years in 1999; reading was assessed on the British Ability Scales II and IQ on the British Picture Vocabulary Scales II. The Environmental Risk Longitudinal Twin Study (E-Risk) comprised 2163 twin children from England and Wales (49.1% male) identified at birth in 1994 and 1995 and included administration of the Test of Word Reading Efficiency at age 7 years and the Wechsler Preschool and Primary Scale of Intelligence-Revised as a test of IQ at age 5 years. MAIN OUTCOME MEASURE: Reading performance by sex in the lowest 15% of the distribution for all 4 studies, with and without taking IQ into account. RESULTS: In all 4 studies, the rates of reading disability were significantly higher in boys. For non-IQ-referenced reading disability: Dunedin study, 21.6% in boys vs 7.9% in girls (odds ratio [OR], 3.19; 95% confidence interval [CI], 2.15-4.17); Christchurch study, 20.6% in boys vs 9.8% in girls (OR, 2.38; 95% CI, 1.62-3.50); ONS study, 17.6% in boys vs 13.0% in girls (OR, 1.43; 95% CI, 1.23-1.65); and E-Risk, 18.0% in boys vs 13.0% in girls (OR, 1.39; 95% CI, 1.04-1.86). The rates for IQ-referenced reading disabilities were similar. CONCLUSION: Reading disabilities are clearly more frequent in boys than in girls.

Aptitude Tests↗
PubMed2001

Using the Colorado birth defects monitoring program to connect families with services for children with special needs.

BACKGROUND AND METHODS: The Community Notification and Referral Program (CNRP), which operates from within the state's birth defects monitoring and prevention program, links children and their families with local public health and early childhood agencies, which then inform families of services and resources in their home communities. In Colorado, many communities have developed systems for identifying, screening, evaluating, and providing services to children with developmental delays or other special needs. CNRP uses the existing infrastructure of services for children with special needs by notifying local community programs of children reported to the birth defects program with birth defects, developmental disabilities, or risks for developmental delay. Children to be referred to local agencies are identified from the birth defects registry on the basis of diagnosis and residence. Minor or lethal conditions are excluded from referral. CNRP provides the child's name, date of birth, address, phone, guardian, diagnoses, date and source of diagnosis, and length of stay to the local agency. A parental consent process is used under some circumstances. RESULTS: CRCSN analyzed data from 1621 children referred to local agencies in 1998. The local agencies contacted 34.1% of the families and referred 46.9%. of those contacted to early intervention, developmental, evaluation, or other services. They determined that 29.5% could definitely or moderately benefit from developmental services. In a telephone survey of families, 65.4% said they had learned about services, resources, or developmental screening about which they had not been aware. CONCLUSION: CRCSN has developed a notification and referral program to link families with services for children with special needs that could serve as a model for other birth defects registries.

Adolescent↗
PubMedDate not supplied

Deinstitutionalization of children with mental retardation: what of dental services?

During the past thirty years there has been marked deinstitutionalization from large state facilities for youngsters and adults with mental retardation and developmental disabilities. In the past, dental (and general medical) services were provided in the institutions by an in-house staff. Increased numbers of former residents now live in small community units. These local residents must now rely on community dental practitioners for needed preventive and restorative services. The current status of these services (or lack there of) is reviewed, together with relevant concerns.

Adult↗
PubMedDate not supplied

Where they gonna live? Affordability and availability of housing for consumers of community based mental health services after reform.

To successfully meet the needs of persons disabled by mental illness, developmental disabilities or substance abuse in a re-organized, de-centralized, community-based setting, existing resources dedicated to affordable housing will need to be re-targeted and new resources from within the mental health funding stream will need to be re-directed to increasing both availability and affordability. The gap between the cost of basic housing and what is affordable to persons whose resources are limited by their disability is not currently being met. Mental health reorganization must address the affordability and availability of housing for persons that the system is intending to serve if the entire effort aimed at more effective, efficient and economic delivery of mental health services is to be successful.

Health Care Reform↗
PubMed2006

Evaluation of a community-based group fitness program for children with disabilities.

PURPOSE: This study examined the feasibility, safety, and effectiveness of a community-based group fitness program for children with disabilities. METHODS: Twenty-eight children with neuromuscular and developmental disabilities, 6 to 14 years of age, participated. The 16-week community-based program, held twice weekly, consisted of strengthening, aerobic conditioning, and flexibility exercises. A pretest-posttest design was used, and the following outcomes were measured: isometric muscle strength of the knee extensors, hip abductors, and ankle plantarflexors, walking energy expenditure, functional mobility, and fitness. Falls and injury data also were collected. RESULTS: Mean program attendance was 75.3%, and no injuries were reported. Improvements in all clinical outcomes were observed. The most clinically meaningful improvement was in functional mobility with a large effect size (0.87). CONCLUSIONS: Physical therapists partnering with community centers may feasibly and safely shift group fitness programs for school-aged children with disabilities from the medical setting to the community.

Activities of Daily Living↗
PubMed2005

Parents' evaluation of developmental status in children born with a birthweight of 1250 g or less.

OBJECTIVE: To evaluate the agreement between parental reporting of development of children born very preterm using the Parents' Evaluation of Developmental Status (PEDS) questionnaire and professional assessment by a paediatric developmental team in the detection of sensorineural disability. METHODS: A cross-sectional cohort study of 362 children born in Queensland with a birthweight < or = 1250 g, who were surviving at 2 and 4 years of age corrected for prematurity, was conducted. Parents completed the PEDS questionnaire prior to their child receiving a neurodevelopmental assessment. The level of agreement for sensorineural disability between the neurodevelopmental assessment and the parents' score on the PEDS questionnaire was measured using the kappa statistic, and screening test characteristics were calculated. Logistic regression was used to investigate factors that might affect agreement. RESULTS: Two hundred and eighty-three (78%) of the eligible children were located and contacted. Of these, 216 (76%) agreed to participate in the study (110, 2-year-olds; 106, 4-year-olds). Agreement between the two forms of rating sensorineural disability (developmental quotient > -2SD (standard deviation), cerebral palsy, bilateral blindness and deafness requiring aids) for the 4-year age group children was fair (kappa = 0.27, P = 0.001). PEDS accurately identified 69% (11 of 16) of disabled children and 72% (65 of 90) non-disabled children. The test characteristics for these children were similar to Glascoe's norming sample with a PPV 31% (95% CI: 14-48%), specificity 72% (95% CI: 62-81%), but lower sensitivity 69% (95% CI: 62-81%) and higher false-negative rate 31% (95% CI: 11, 59). Agreement for the 2-year age group was fair with poor test characteristics. Other comparisons for both age groups (PEDS A and B compared using a disability status with DQ > -1SD) showed poor agreement and test characteristics. Gestation age < 27 weeks and maternal education at or below grade 10 in the 2-year age group were the only factors independently affecting agreement. CONCLUSIONS: The agreement between parental evaluation of sensorineural disability status using PEDS and paediatrics developmental assessment in children born very preterm at 4-years corrected age for prematurity compares favourably with Glascoe's norming sample. The lower agreement seen in the 2-year age group limits the utility of PEDS to be used as a screen for disability at an age when early intervention may be useful. The PEDS questionnaire is designed and normed for the general paediatric population, and it is not clear if parents of children born very preterm may have interpreted the PEDS questionnaire in relation to their satisfaction with their child's developmental progress rather than their child's functional ability.

Child, Preschool↗
PubMedDate not supplied

The Centers for Disease Control program to prevent primary and secondary disabilities in the United States.

The Disabilities Prevention Program builds on traditional Centers for Disease Control (CDC) strengths in public health surveillance, epidemiology, and technology transfer to State and local governments in translating the findings of research into prevention programs. The objectives of the CDC program are to provide a national focus for the prevention of primary and secondary disabilities, build capacity at the State and community levels to maintain programs to prevent disabilities, and increase the knowledge base necessary for developing and evaluating effective preventive interventions. During 1989, CDC, in consultation with the National Council on Disabilities and members of the disability community, has elected to focus its effort in three areas: developmental disabilities, injuries to the head and spinal cord, and secondary complications among persons with physical disabilities.

Centers for Disease Control and Prevention, U.S.↗
PubMed2005

Developmental screening.

An estimated 5 to 10% of the pediatric population has a developmental disability. The current strategy to identify these children is through developmental surveillance, a continuous procedure in which the health professional observes the infant, takes a developmental history, and elicits any concerns that the caregiver might have. However, identification of delayed children is ineffective when based solely on routine surveillance. A necessary adjunct is developmental screening: the process of systematically identifying children with suspected delay who need further assessment. Screening tests greatly improve the rate of identification. With the advent of intervention programs and the support of organizations such as the American Academy of Pediatrics, the topic of developmental screening is a timely and essential one. This review aims to describe the properties of screening tests, to evaluate the available tools for developmental screening while providing a representative sample of the currently available developmental tests, and, finally, to evaluate the efficacy of intervention programs, a needed prerequisite to justify screening.

Adolescent↗
PubMed2005

Overselective stimulus control in residential school students with intellectual disabilities.

Overselective stimulus control was assessed in 29 students at residential schools for individuals with developmental disabilities. Overselectivity testing included three different delayed identity matching-to-sample tasks. Sample stimuli for the Form/Color Test were nine possible combinations of three colors and three forms. On each trial, the S+ stimulus was identical to the sample, one S- was the same color as the sample but a different form, and the other S- was the same form but a different color. Sample stimuli for the Two-Sample Test were two alphanumeric characters. The S+ stimulus was identical to one of the sample stimuli, and two S- stimuli were characters different from both samples. Sample stimuli for the Faces Test were six digital images of adult faces. On each trial, the S+ stimulus was identical to the sample, one S- stimulus was a non-matching face to which one sample feature had been added (e.g., an identical hat or scarf), and the other S- stimulus was an unaltered non-matching face. All participants were also tested with the Peabody Picture Vocabulary Test III (PPVT) and the Autism Diagnostic Observation Schedule (ADOS). Results indicated overselective stimulus control on at least one test for 18 of the 29 participants. Overselectivity (a) was distributed across a range of PPVT mental age equivalent scores from <1.75 to 8.83; (b) was more likely in individuals with higher ADOS scores; (c) was most likely on the Two-Sample Test; and (d) was found in five individuals on more than one of the tests. Thus, overselective stimulus control may occur across a range of characteristics typical for students who attend residential special-education programs.

Adolescent↗
PubMed1994

How families of children with severe disabilities choose to allocate a cash subsidy.

This study examines how families raising children with severe developmental disabilities use a cash subsidy. Eighty-one families were interviewed prior to receiving the $225 monthly subsidy and again 1 year later. Families reported no change in the number of services they used, nor did they significantly increase the amount spent on services. Although families did not spend significantly more on purchases in the month prior to each interview, there was a significant increase in the amount spent on major purchases made in the year after receipt of the subsidy. The pattern and amount of expenditures are described. Lower income families reported the subsidy as significantly more helpful than higher income families. The implications of the findings for social policy are discussed and recommendations are made.

Budgets↗
PubMed2005

[Disclosure of severe development disability: a survey of parents' experiences and preferences at an Israeli child development center].

BACKGROUND: Informing parents of a severe developmental disability (SDD) in their child is a frequent, yet extremely challenging part of care at any child developmental center. In this study, which was the first to address this issue in Israel, we asked parents for feedback on their experiences in receiving such news at our center, in order to help us develop a set of guidelines for improving clinical practice. OBJECTIVE: To obtain parents' perspectives on the meeting at which they were first informed that their child has a SDD. How satisfied were they with these encounters? What factors are associated with higher and lower levels of satisfaction with these meetings? DESIGN: Mixed-method (quantitative/qualitative) questionnaire survey. SETTING: Regional HMO Child Developmental Center. SUBJECTS: Study participants were 33 parents, constituting 62% of all those whose children first received a diagnosis of SDD (mental retardation, autism/PDD, cerebral palsy, or genetic syndromes) at our center over the past seven years. MEASUREMENTS: Parents were contacted by the social worker involved in their child's care to obtain initial consent for participation in the study. A 34-item self-report survey questionnaire, containing both closed- and open-ended questions, was sent to them by mail, to be completed anonymously. Questions were based on a survey of the literature and focused on the setting of the meeting, its contents, staff behavior, parents' satisfaction with the meeting and background characteristics of the family and child. RESULTS: Almost two-thirds (63%) of respondents reported a high or very high level of satisfaction with the meeting at which they first heard the diagnosis of SDD. Both content analysis of open questions and statistical analysis of correlations between satisfaction and a series of potential predictors pointed to three main areas affecting parental satisfaction with the meeting: (1) Amount and type of information conveyed: Parental satisfaction with the meeting was higher when detailed information was provided regarding a number of issues (diagnosis, treatment options, educational settings, rights for benefits and assistance etc.), when parents were referred to additional sources of information, and when the clinician was seen to be knowledgeable and confident. (2) Attitudes conveyed by staff regarding the child's condition: Parental satisfaction with the meeting was higher when the child's strengths were also addressed (and not only problems); when the general tone was not pessimistic and some hope and optimism were also conveyed; and when expected and possible future developments were specified. (3) Staffs approach to the parents: Parental satisfaction was higher when staff was attentive to parents and empathic; when they clearly expressed willingness to accompany and assist the family over time; when they were respectful toward parents and related to them as equal partners; and when parents felt that they had been informed of the diagnosis without delay and that no information had been withheld from them. CONCLUSIONS: Parents are not inevitably dissatisfied with meetings at which they are informed that their child has a SDD. Our findings point to concrete steps that clinicians can take in order to increase the chances of parental satisfaction with these meetings.

Adult↗
PubMedDate not supplied

[Coping strategies and psychological well-being in mothers of children with disabilities].

The purpose of the study was to determine relationships between coping with stress and well-being in mothers of developmentally disabled children. Marital, parenthood and global life satisfaction were analyzed. Two interesting relationships between coping strategies and well-being (marital and global life satisfaction) were found. The results are discussed in terms of parental stress experienced by mothers of children with disabilities.

Adaptation, Psychological↗
PubMed2000

Hydrocephalus and the reproductive health of women: the medical implications of maternal shunt dependency in 70 women and 138 pregnancies.

An increasing number of women with cerebrospinal fluid shunts are surviving to child-bearing age, and are making independent decisions in regard to planning their families. As a result, a broad range of interdisciplinary health care professionals will require information about the management of these patients, especially during pregnancy and delivery. The purpose of this ongoing study is to gather comprehensive data from shunted women regarding their clinical history during pregnancy and within the six-month post-partum period. As part of this study, the following questions were addressed: 1. How does maternal shunt dependency influence the course of pregnancy and pregnancy outcomes? 2. What neurosurgical complications characterize this population of patients? 3. What complications of shunt dependency influence obstetrical management including pre-natal testing and delivery? 4. What are the implications of shunt dependency with respect to general reproductive health concerns within this population? A total of 70 respondents, 18-41 years old and accounting for 138 pregnancies, completed a questionnaire providing information on maternal background, medical history, shunt performance during pregnancy, management of delivery, pregnancy outcomes, and unusual complications. One hundred three (103) pregnancies resulted in 105 live births including two surviving sets of twins; of these, 84 occurred in women with ventriculoperitoneal shunts (including both mothers who gave birth to live twins). Four women underwent therapeutic abortions, five delivered pre-term, one mother delivered a stillborn infant, and 16 experienced 32 miscarriages (including two ectopic pregnancies, and 33 fetal losses). Three women had seizures during pregnancy. Nine mothers reported an increase in headache activity during pregnancy. Twelve described abdominal pains during the course of pregnancy with anecdotal reports of increased frequency of painful episodes during the first and third trimesters. Twelve babies were diagnosed with congenital defects, including one pair of fraternal twins individually diagnosed with symmetric parietal foramina. Seven additional children were diagnosed with developmental disabilities including attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), pervasive developmental delay (PDD), and autism. Shunt malfunctions and revisions occurred seven times (four women) during pregnancy, and in 24 pregnancies (13 women) within six months of delivery. One malfunction and revision followed the miscarriage of twins at 12 gestational weeks. No acute malfunctions requiring immediate revision occurred during delivery, although two women reported severe headaches during labor. Transient signs of raised intracranial pressure occurred in 15 mothers over the course of 19 pregnancies which did not require surgical revision of the shunt following delivery or termination of pregnancy. No signs of shunt malfunction were identified in 100 of the pregnancies described in this series; 31 of these resulting in miscarriage and 69 resulting in live births. This study extends observations made previously to a larger population of shunt dependent mothers, and nearly doubles the amount of data available in our last publication. The results suggest that maternal shunt dependency carries a relatively high incidence of complications for some patients, but that proper management of these patients can lead to normal pregnancy and delivery.

Abortion, Spontaneous↗
PubMed2002

Treatment considerations: role of surgery.

Patients with developmental disabilities, including retardation and global developmental delay, are not ideal candidates for epilepsy surgery. Because they have an increased likelihood of diffuse brain dysfunction and multifocal or generalized epileptogenic zones, there is an increased chance that a focal cortical resection will not confer a major improvement in their seizure frequency and severity. There is also increased concern that cortical resection will lead to increase in the patient's disability. However, by applying the basic principles of epilepsy surgery selection (i.e., convergence of multiple lines of localizing evidence) to this population, patients with a reasonable likelihood of good seizure control can be identified. Various means of localizing seizure onset are reviewed, including history and examination, electroencephalography, magnetic resonance imaging, position emission tomography, single-photon-emission tomography, and magnetoencephalography.

Journal Article↗
PubMed1993

Two-year follow-up of skills training with mothers of children with disabilities.

The long-term impact of a life skills-training program for mothers of children with a variety of developmental disabilities was evaluated. The components of the program included a cognitive-behavior approach designed to reduce stress and depression, improve communication and problem-solving skills, and improve satisfaction with social support networks. Participants completed assessment measures at pretest, posttest, and at a 20- to 26-month follow-up. Mothers in the skills-training class reported lower stress at posttest, lower depression levels at 2-year follow-up, and improved coping skills at posttest and 2 years later. Single mothers in the skills-training program reported the greatest satisfaction with their relationships with professionals. Mothers of children with moderate disabilities reported greater satisfaction with intimate relationships than did mothers of children with either mild or severe disabilities.

Adaptation, Psychological↗