Adapting Tricycles for Children with Cerebral Palsy: Tricycle Vendor List
Author: Mia Sugi DPT, Eileen Fowler PhD, PT, Kara Siebert DPT, MEd, Sharon DeMuth DPT, Evan Goldberg MS. This handout provides a list of vendors to use when purchasing an accessible Tricycle for a child with a physical disability.
Growth Hormone Therapy Improves Bone Mineral
This article is about a pilot study that was done to evaluate the effect of 18 months of GH therapy on spinal BMD, linear growth, biochemical markers, and functional measures in children with cerebral palsy.
Pediatric Endurance and Limb Strengthening for Children with Cerebral Palsy (PEDALS) – A Randomized Controlled Trial Protocol for a Stationary Cycling Intervention
This article is about the rationale and design of a randomized controlled trial examining the effects of a stationary cycling intervention for children with Cerebral Palsy.
Pilot Trial of Albuterol in Duchenne and Becker Muscular Dystrophy
This article is about a randomized, placebo-controlled pilot study of albuterol in nine boys with dystrophinopathies. The primary outcomes were 1) isometric knee extensor and flexor strength; and 2) manual muscle testing (MMT). Isometric knee extensor strength and MMT scores were significantly higher in patients taking albuterolvs placebo.
Promotion of Physical Fitness and Prevention of Secondary Conditions for Children with Cerebral Palsy: Section on Pediatrics Research Summit Proceedings
The purpose of this article is to highlight the content and recommendations of a Pediatric Research Summit developed to foster collaborative research in the promotion of physical fitness for children with Cerebral Palsy.
The Effect of Direct Measurement Versus Cadaver Estimates of Anthropometry in the Calculation of Joint Moments During Above-knee Prosthetic Gait in Pediatrics
The purpose of this study was to compare joint moments using anthropometrics calculated from cadaver studies versus direct measurements of the residual limb and prosthesis for children with an above-knee amputation.
The Effect of Lower Extremity Selective Voluntary Motor Control on Interjoint Coordination During Gait in Children with Spastic Diplegic Cerebral Palsy
The purpose of this study was to examine the relationship between Selective Voluntary Motor Control ability and hip and knee coordination during the swing phase of gait in participants with spastic CP. Relative phase analysis was used to calculate the minimum relative phase (MRP) angle during swing; a measurement of interjoint coordination between the hip and the knee. SVMC ability was measured using the Selective Control Assessment of the Lower Extremity (SCALE) tool.
A Comparison of Psychopathology in Children with and without Prenatal Alcohol Exposure
The purpose of this study was to examine psychiatric diagnoses in a non-clinic referred sample of 130 children ages 6 to 12 years old, with and without prenatal alcohol exposure. A standardized diagnostic interview procedure was employed, comparing children with prenatal alcohol exposure and social skills deficits to children without prenatal alcohol exposure and social skills deficits. Findings suggest that children with prenatal alcohol exposure exhibit significantly more psychopathology, including symptoms of anxiety, disruptive behaviors, and mood disorders, when compared to children without alcohol exposure.
A Controlled Social Skills Training for Children with Fetal Alcohol Spectrum Disorders
Children with fetal alcohol spectrum disorders (FASD) have significant social skill deficits. The efficacy of child friendship training (CFT; Frankel and Myatt 2003) versus delayed treatment control (DTC) was assessed for 100 children ages 6 to 12 with FASD. Children in the CFT group showed clear evidence of improvement in their knowledge of appropriate social behavior and, according to parent report, CFT resulted in improved social skills and fewer problems behaviors compared with DTC.
Alcohol Use and Serious Psychological Distress Among Women of Childbearing Age
The purpose of this study was to present nationally representative findings on the occurrence of alcohol use and serious psychological distress among women, as well as their access to health care.
Alcohol Use in Pregnant Low Income Women
This study examined alcohol use in pregnant low income women.
Behavioral Regulation as a Predictor of Response to Children's Friendship Training in Children with Fetal Alcohol Spectrum Disorders
The purpose of this study was to examine the role of EF as a predictor of treatment response to a controlled social skills intervention for children with FASDs. A total of 100 children between the ages of 6 and 12 received Children’s Friendship Training (CFT). Treatment outcome was measured using parent report on the Social Skills Rating System (SSRS). The results demonstrated that behavioral regulation as measured on the BRIEF predicted the effectiveness of CFT for children with FASDs, regardless of general intellectual functioning. Specifically, the ability to control impulses, solve problems flexibly, and monitor emotional responses significantly predicted improvement in social skills and reduction in problem behaviors following CFT.
Brief Intervention for Alcohol Use by Pregnant Women
The success of brief intervention conducted in a community setting by nonmedical professionals has significant implications for national public health policies.
Duplication 8q22.1-q24.1 associated with bipolar disorder and speech delay
Authors: JF Macayrana, SG Brodieb, PN Raob, MJ O’Connor, JA Grayc, B Ciarimbolic and KM Dipple.
Abstract: A case report of a child with bipolar disorder found to have an unbalanced translocation involving the long arm of chromosome 8. This study provides further evidence to support previous linkage studies of a potential causative gene on 8q for bipolar disorder.
Health Care Provider Advice and Risk Factors Associated
This study examined the extent to which pregnant women participating in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) were counseled by their health care providers to stop drinking alcohol during pregnancy. A second purpose was to identify characteristics associated with alcohol consumption postrecognition of pregnancy. Method: The sample consisted of 279 women who continued to drink after learning they were pregnant. Measures of provider advice on alcohol consumption, demographic characteristics, caffeine intake, smoking, other drug use, alcohol risk (using the TWEAK scale), and depressive symptoms on the Center for Epidemiological Studies Depression Scale (CES-D) were collected. Results: Sixty-two percent of women had significantly high TWEAK scores, and 60% scored within the clinical range for depression (CESD = 16). Sixty percent of sample women had been advised by their care providers not to drink alcohol during pregnancy. Women who were most likely to receive advice were black non-Hispanic and Hispanic, were Spanish speaking, were less educated, were on public assistance, and had a higher number of alcohol-related risk behaviors. Advanced age, public assistance, caffeine use, smoking, and elevated TWEAK and CESD scores predicted elevations in alcohol consumption rates. Conclusions: Although advice to stop drinking during pregnancy was provided to 60% of this sample, women continued to drink following pregnancy recognition, with alcohol consumption rates highly associated with sociodemographic and psychological factors, namely maternal depression. Because elevations in alcohol consumption during pregnancy are associated with poorer developmental outcomes for children, further efforts are needed to better address social and mental health factors that influence consumption.
Mapping White Matter Integrity and Neurobehavioral Correlates in Children with Fetal Alcohol Spectrum Disorders
Brain structural abnormalities and neurocognitive dysfunction have been observed in individuals with fetal alcohol spectrum disorders (FASDs). Little is known about how white matter integrity is related to these functional and morphological deficits. We used a combination of diffusion tensor and T1-weighted magnetic resonance imaging to evaluate white matter integrity in individuals with FASDs and related these findings to neurocognitive deficits. Seventeen children and adolescents with FASDs were compared to 19 typically developing age and gender matched controls. Lower fractional anisotropy (FA) was observed in individuals with FASDs relative to controls in the right lateral temporal lobe and bilaterally in the lateral aspects of the splenium of the corpus callosum. White matter density (WMD) was also lower in some, but not all regions where FA was lower. FA abnormalities were confirmed to be in areas of white matter in post hoc region of interest analyses, further supporting that less myelin or disorganized fiber tracts result from heavy prenatal alcohol exposure. Significant correlations between performance on a test of visuomotor integration and FA in bilateral splenium, but not temporal regions were observed within the FASD group. Correlations between the visuomotor task and FA within the splenium were not significant within the control group, and were not significant for measures of reading ability. This suggests that this region of white matter is particularly susceptible to damage from prenatal alcohol exposure and that disruption of splenial fibers in this group is associated with poorer visuomotor integration.
Paradigms for Alcohol Use and Co-occuring Behavioral Health Risk Factors Among Women of Childbearing Age
Alcohol use often co-occurs with one or more other behavioral health risk factors that can place women and their offspring at heightened risk for morbidity and mortality. Women with co-occurring alcohol use and behavioral health risk factors, such as tobacco use, illicit drug use, and mental illness are especially vulnerable. These women are not only at increased risk for hazardous reproductive outcomes, but also physical and psychological illness, disability and premature death, interpersonal conflicts, violence and legal problems, unemployment, and poverty. Despite evidence that co-occurring multiple behavioral health risk factors are prevalent and often associated with more severe adverse health outcomes and higher social economic costs, a majority of health promotion and intervention programs are designed to target only one risk factor of concern.
Preconception Care for Reducing Alcohol Exposure in Pregnancy
Although the consequences of alcohol use during pregnancy are well known, few health care professionals recognize that preconception identification and counseling can be very effective in helping at-risk women reduce or stop drinking.
Predictors of Stress in Parents of Children with Fetal Alcohol Spectrum Disorders
This study examined child characteristics and family factors as predictors of stress in the biological or adoptive parents of 6- to 12-year-old children with fetal alcohol spectrum disorders (FASDs). Impaired executive functioning, poorer adaptive functioning, externalizing and internalizing behavior problems, and adoptive parent status all made significant and independent contributions to the prediction of higher levels of child domain stress, as reported by parents on the Parenting Stress Index. Biological parent status and fewer family resources were associated with higher levels of parent domain stress. Teacher ratings of the child’s executive functioning impairments and externalizing and internalizing behavior problems also were associated with parent reports of child domain stress.
Prenatal Alcohol Exposure and Depressive Features in Children
This study examined the association between prenatal alcohol exposure and self-report of depressive symptoms in 5- to 6-year-old children. Higher levels of prenatal alcohol exposure were hypothesized to be associated with endorsement of a greater number of depressive symptoms in children. It was also hypothesized that maternal depression, although associated with drinking behavior, would contribute independently to outcome. Finally, the mother’s behavior toward the child, as well as current drinking practices, were postulated to mediate the relationship between prenatal alcohol exposure and child depressive symptoms.
Psychiatric Illness in A Clinical Sample Of Children With Prenatal Alcohol Exposure
The purpose of this study was to describe psychiatric disorders exhibited by children with prenatal alcohol exposure. Twenty three children between the ages of 5 and 13 years who were referred to the UCLA Fetal Alcohol and Related Disorders Clinic because of heavy exposure to alcohol in utero were evaluated.
Recognition and Prevention of Fetal Alcohol Syndrome
Alcohol use among women of childbearing age is prevalent in the United States, with approximately 1 in 5 non-pregnant women reporting binge drinking (5 or more drinks on any one occasion) and 1 in 25 pregnant women reporting binge drinking. Alcohol use during pregnancy results in a spectrum of adverse outcomes known as fetal alcohol spectrum disorders. Fetal alcohol syndrome (FAS)is one of these disorders. Fetal alcohol syndrome is characterized by specific facial abnormalities and significant impairments in neurodevelopment and physical growth. Early identification of children with FAS has been shown to enhance their longterm outcomes. In an effort to improve clinical recognition of children with this condition, Centers for Disease Control and Prevention (CDC) was directed by Congress in 2002 to lead the development of uniform diagnostic criteria for FAS and other prenatal alcohol–related conditions. The purpose of this commentary is to provide clinicians a summary of the report released by CDC describing the current diagnostic criteria for FAS. In addition, advancements have been made in screening and brief interventions for alcohol use disorders in women who have the potential to make significant strides in the prevention of FAS spectrum disorders. Knowledge of the diagnostic criteria for FAS can lead to increased identification of the syndrome in infants and children and the provision of appropriate medical and support services. Screening for and intervening with women at risk for an alcohol-exposed pregnancy can prevent FAS and other fetal alcohol spectrum disorders.
Reducing Adverse Outcomes from Prenatal Alcohol Exposure: A Clinical Plan of Action
Authors: R. Louise Floyd, Mary J. O’Connor, Jacquelyn Bertrand, and Robert Sokol
Abstract: Fetal alcohol spectrum disorders (FASDs) are among the leading preventable causes of developmental disorders in the United States; however, recognition and prevention of these conditions cannot be achieved without informed and educated health providers. This commentary addresses the importance of recognition and prevention of FASDs through the use of well-established standardized practices of diagnosis, screening, and brief alcohol reduction counseling. It is hoped that more knowledge on currently available procedures will encourage their use in the provision of routine health care to all women of childbearing age.
Strategies to Reduce Alcohol Exposure in Pregnancies
Authors: R. Louise Floyd · ShahulEbrahim, James Tsai, Mary O’Connor, and Robert Sokol.
Abstract: Prenatal alcohol exposure remains a leading preventable cause of birth defects and developmental disabilities in the United States, with the prevalence of alcohol consumption by women in childbearing age remaining high and unchanged over time. This paper provides a summary of current knowledge and information on recognition and prevention of an alcohol-exposed pregnancy, including overall alcohol exposure burden among women of child-bearing age, diagnostic criteria for fetal alcohol syndrome (FAS), and recommendations for screening, assessment and interventions to reduce alcohol exposed pregnancies.
The Relationship of Prenatal Alcohol Exposure and the Postnatal Environment to Child Depressive Symptoms
Authors: Mary J. O’Connor, and Blair Paley
Abstract: This study examined the association between prenatal alcohol exposure and child depressive symptoms, and the mediating effects of maternal and child characteristics. Participants were 42 children aged 4–5 years and their biological mothers. Prenatal alcohol consumption was assessed by self-report of maximum drinks per drinking occasion. The Pictorial Depression Scale (PDS) measured child depressive symptoms. Mother–child interactions were assessed using the family interaction puzzle task. Structural equation modeling indicated that prenatal alcohol exposure was associated with more negative child affect. In turn, mothers of more negative children were less emotionally connected to their children, and those children had higher levels of depressive symptomatology. Results could not be explained by current maternal drinking patterns or maternal depression. Study findings highlight the importance of examining prenatal alcohol exposure as a risk factor in the prediction of childhood-onset depression and the environmental mechanisms that may mediate that relationship.
Under Recognition of Prenatal Alcohol Exposure in a Child Inpatient Psychiatric Setting
Prenatal alcohol exposure results in significant risk for psychiatric disorders, yet under recognition of exposed individuals in psychiatric settings may be common. A chart review was conducted on 130 consecutive admissions to the child psychiatry inpatient service at a large university medical center. Thirty percent of child inpatients had documented prenatal alcohol exposure and, within the exposed group, 26% met full criteria for fetal alcohol syndrome (FAS). None of the children had been diagnosed with FAS prior to admission. Children with prenatal alcohol exposure were more likely to be hospitalized for externalizing disorders compared to unexposed children. Prenatal alcohol exposure may represent a key risk factor for many children with externalizing psychiatric disorders.
Cultivate leaders with disabilities who provide service to the community. This was the charge given to Madeline Harcourt of the Center on Disability Studies, located within the University of Hawai‘i. In response, Madeline developed the Ready, Set, Go program which trained seven individuals with disabilities to identify their unique strengths and use them to serve others. To learn about the journey of the Ready, Set, Go participants read our interview with Madeline.
LINC's Success Story: Abilities United
Abilities United, in Palo Alto, California, provides services to enrich the lives of people with developmental disabilities. Through their Community Connections initiative, they developed partnerships with 15 local non profits. As a result ofthis collaboration, 30 individuals with developmental disabilities received education on important community issues and chose to volunteer at one or more of 10 volunteer sites. To learn more, read our interview with Abilities United’s Andrea Throndson and Linda Chin.
LINCS Success Story: Aurora Ortiz
Synopsis: Aurora Ortiz was born in September 1942 as the fourth child out of 12. Her family was poor and in bad health, so she spent most of her youth in orphanage type missions. At age 55, she had multiple accidents because of her visual impairment. To cope with this new disability, she attended the Blind Community Center where a new world immediately opened up. She is now the center’s Volunteer Coordinator as well as a dedicated member. She is committed to helping the Center survive and thrive.
LINCS Success Story: Joe Meadours
Synopsis:Joe is the Executive Director of People First of California, a statewide network that advocates for the rights of individuals with developmental disabilities. Joe is the first People First Director with a developmental disability. As part of his career, he sits on numerous boards of directors around the country, helping agencies and community groups create policies that enhance the lives of people with developmental disabilities. In his free time, Joe loves to take long bicycle rides, snap photographs and sample different restaurants. Joe is one example of the many amazing people with disabilities who are making a difference in the lives of others. Here is his story.
LINCS Success Story: Ready, Set, Go! Program Cultivate leaders with disabilities who provide service to
the community. This was the charge given to Madeline
Harcourt of the Center on Disability Studies, located
within the University of Hawai‘i. In response, Madeline
developed the Ready, Set, Go program which trained
seven individuals with disabilities to identify their
unique strengths and use them to serve others. To learn
about the journey of the Ready, Set, Go participants read
our interview with Madeline.
LINC's Success Story: Sacramento START
Sacramento START, an afterschool program provider, organized service events at five of their elementary schools. They invited students from special education classrooms and their families to join other students and families already connected with START. 74 volunteers participated, 38 of those had disabilities. 350 families also took part, 55 of those families were connected to students in special education. 5 community-created tile murals were born. To learn more, read our inter view with START program director, Cheri Chord.
LINCS Success Story: San Diego People First
San Diego People First is a self-advocacy group comprised of individuals with developmental disabilities. Since 1988, San Diego People First had brought people together to socialize and develop skills. In 2006, they took their activities to the next level and organized a two-day Leadership Symposium. Nearly 30 individuals, hailing from local self-advocacy groups were trained as leaders and given tools to engage their respective groups in community service. As a result, 350 members of self-advocacy groups received information on how to get involved in community service, most joined on-going volunteer projects, and an on-going leadership series was launched. To learn more, read our interview with Paul Mansell, President of San Diego People First.
LINCS Success Story: VITAS TRACE Communities can be permanently altered when volunteers with disabilities are regularly included. Partnerships between volunteer programs and disability organizations can create stable recruitment pipelines that form the basis of this transformation. But how do two partners go from meeting to marriage? TRACE is program of the San Diego Unified School District which prepares high school students with disabilities
for independence. For more than three years, TRACE students
have volunteered weekly at VITAS Innovative Hospice Care. The partnership has been spearheaded by VITAS Volunteer Coordinator Alexander Silva. Read our interview Alex, Kathy Pracanica—TRACE Special Education Technician, and TRACE students—Teresa and Kelly to learn more about developing sustainable partnerships that create impact year after year.
LINC's Success Story: YAMEAN
In Sacramento, California, Crossroads Employment Services, and E.L. Hickey Junior/High School partnered to create the YAMEAN Project (Youth Actively Mastering Each Achievement Now!). Students at E.L. Hickey deal with tough urban challenges. YAMEAN helped 14 of those students, with and without disabilities, become leaders. YAMEAN students learned art fundamentals and acquired leadership skills. Want to know what made their project a success? Read our interview with project director, Madeline Thompson.
LINCS Success Story: YouthSERVE YouthSERVE, a program of the Volunteer Center of Santa Cruz, set out to make their National and Global Youth Service Day project inclusive of youth with disabilities. Read our interview with Emily Redding, YouthSERVE’s Program Coordinator, to learn how they did it.
Links Success Story: Community Senior Services
Community Senior Services of Claremont, California teamed up with Ability First to prepare their community for natural disaster. Over 50 volunteers, senior citizens, and teens with developmental disabilities prepared and delivered 50 disater kitts to isollated seniors. Want to know how they did it? Reado the intervirew with CSS'S Sandee Hayden.
Participation of Individuals with Developmental Disabilities and Families on Advisory Boards and Committees Published in the September 2009 issue of the Journal of Disability Policy Studies was authored by Joe Caldwell , former Policy Analyst for AUCD as well as representatives from both the Tarjan Center at UCLA and the Indiana Institute in Disability and Community University Centers for Excellence in Developmental Disabilities. This article explores the supports that increase the meaningful participation of individuals with disabilities and families on advisory boards within the field of disability advocacy.
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