News and Events
Parent Leadership and Advocacy Training Project Launching This Spring
The Center is launching our new Parent Leadership and Advocacy Training project this spring. This 36 hour leadership training includes : history of the disability and parent movements, overview of policies affecting persons with disabilities, IDEA , IEP’s and IFSP’s, transition and adult services, guardianship, the legislative process, health care financing, accessing health care, medical home, effective communication, parents as advisory, skills to run a meeting, effective advocacy strategies and ethics. The training is now scheduled in Waterbury and Derby in 12 3hour sessions set for February through May. Other sessions will be scheduled soon in Hartford and Fairfield. Other parent groups are now seeking to co-sponsor the training with us in other locations across the state. Those interested should contact Cathy Adamczyk, 860-679-1585 or Molly Cole, 860-679-1595.
PLAT Brochure
North Star Parent Leadership Training Announcemnt
Waterbury Parent Leadership Training Announcemnt
Act Early Regional Summit Project
The Act Early Regional Summit Project will bring together key state leaders from the early intervention and early childhood community for the purpose of enhancing relationships and collaborations among these key stakeholders and providing a forum to share information and insights on the opportunities, challenges, and barriers for families and children with Autism Spectrum Disorders (ASD) and related developmental disabilities in the identification, assessment, diagnosis and intervention areas.
The summits are an effort jointly supported by the Federal Partners from Maternal Child Health Bureau and National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. The Summit serves as a forum to share information on the opportunities, challenges, and barriers for families and children with autism spectrum disorders and related disabilities. A primary goal is to enhance relationships and collaborations among these key stakeholders to address the needs in early identification, assessment, diagnosis and intervention for young children with ASD. There is a critical need at the national and state levels to address systems of care for autism, given the increased prevalence. In each region that has held a summit thus far, the UCEDDs/LENDs have helped AUCD develop and formulate state teams. The teams may consist of stakeholders such as: state agencies, researchers, policy makers, families, etc.
The summit is scheduled for April 25 and 26.
Survey of Parents with a Child with Cornelia de Lange Syndrome (CdLS)
The University of Connecticut's Center for Developmental Disabilities (UCEDD) in collaboration with the Cornelia de Lange Syndrome Foundation has developed a survey to gather information on the therapeutic, medical, and educational experiences of children with CdLS and their families. With information gained from this survey, researchers hope to develop educational guidelines for parents, as well as professionals working in the school arena. This project is a follow-up to a broader survey in 2007, which saw overwhelming support from parents.
If you would like to participate, click on the link below. If you would prefer a paper copy, contact Cristina Wilson, Ph.D., at 860-679-1529 or cmwilson@uchc.edu; or Jessica Sims at (860) 679-1539 or sims@uchc.edu.
Click here for the CdLS Parent Survey.
UCEDD Launches a Faith Based Initiative
As part of our efforts to ensure full inclusion of people with disabilities and their families in all aspects of community, the UCEDD has launched a faith based initiative to assist faith communities in supporting and engaging persons with disabilities. Several activities have already begun as part of this project:
- We have convened an advisory council of consumers and representatives of various faith communities to share their expertise and suggestions.
- We have launched a series of radio broadcasts in partnership with the Conference of Churches. These seven minute broadcasts are featured on the Health segment of RICH ANSWERS, a show about Religion and Public Affairs hosted by Rev. Shelley Copeland of the Conference of Churches. The show is broadcast on WRCH, 100.5 FM at 5:30AM Sunday mornings. The first two segments will air on November 18th, and we plan to develop an entire series on including persons with disabilities into worship, religious education, pastoral care, and the social life of faith congregations.
- We have begun identifying faith communities who have ideas and strategies to share with others, and we will feature these both on the broadcasts and in other forms of support and assistance through our faith based initiative.
For more information please contact:
Molly Cole
860.679.1595
mcole@uchc.edu
Survey of Primary Care Physicians:
Serving Adults with Autism Spectrum Disorders Invitation
If you have received an invitation by mail to participate in our study of Primary Care Physicians, please click the link below and complete the short survey.
Click here to complete survey. (This survey is only open to the study sample)
Seeking Participants with a Diagnosis of Autism Spectrum Disorder or Fragile X Syndrome
Research at Beth Israel Deaconess Medical Center is investigating cortical plasticity in individuals with autism spectrum disorders and Fragile X syndrome using noninvasive transcranial magnetic stimulation.
Transcranial magnetic stimulation (TMS) is an experimental way to transiently activate specific brain areas through the scalp that has been used for the past 20 years in neurology and psychiatry. Safety guidelines have been developed that will be closely followed.
The study involves up to 7 visits.
Subjects will be asked to undergo a neurological exam, neuropsychological assessments, MRI, and TMS.
Study Eligibility: Subjects must be 15-65 years of age, diagnosed with autism spectrum disorders or Fragile X Syndrome, have no known history of neurofibromatosis or tuberous sclerosis, cerebral palsy, frank neurological damage, or significant dysmorphology.
Subjects will be compensated $60 per session for their participation.
If you are interested, or to learn more, please contact Lindsay Oberman at 617-667-5247 or loberman@bidmc.harvard.edu.
UConn UCEDD Director, Mary Beth Bruder, Ph.D., calls for use of stimulus funds to train professionals in Birth-to-Three programs.
In a recent Education Week article about federal economic-stimulus money for education, Dr. Bruder was quoted as saying, “Personnel needs are tremendous, as are service-coordinator needs. We’re not training enough, and we’re not training well, in the preservice arena."
UConn Study on Shaken Baby Syndrome (SBS)In Progress
The SBS parent education models under study were both implemented and evaluated as primary prevention interventions. This study will take place within the Nurturing Families Network Intensive Home Visiting Programs, funded by the Connecticut Children’s Trust Fund, which is a secondary prevention program that targets first time mothers who screen as being at-risk for child maltreatment. This study represents the first effort to evaluate the effectiveness of the two parent education models as secondary prevention interventions. Data is still being collected for this project. For more information, please contact:
Cristina Mogro-Wilson, Ph.D.
860.679.1529
cmwilson@uchc.edu
Click here to view this project.
UConn UCEDD provides editorial support to Infants and Young Children, an Interdisciplinary Journal of Special Care.
UConn UCEDD provides editorial support to Infants and Young Children, an Interdisciplinary Journal of Special Care. Mary Beth Bruder, Ph.D, Professor of Pediatrics and Educational Psychology and the Director of the University of Connecticut A.J. Pappanikou Center for Excellence in Developmental Disabilities Education, Research, and Service, is now the editor of the Journal.
UConn UCEDD receives LEND grant
The Center is the recipient of one of four new LEND grants awarded by the Bureau of Maternal and Child Health, in the Department of Health and Human Services. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) is a training program for professionals aimed at improving the health of infants, children and adolescents who have, or are at risk for developing, neurodevelopmental and other related disabilities, with a special emphasis on autism spectrum disorders in Connecticut. The program seeks to achieve its mission by 1) training graduate and post-degree students seeking individualized multidisciplinary training experiences; 2) collaborating with state and local agencies to provide leadership education and training; 3) providing community and family leadership training opportunities; and 4) ensuring families and youth are included in LEND training activities. Click here for the abstract.
Immediate Openings for Families As Faculty
The Center has immediate openings for families who would like to learn how to teach adults (graduate students and practitioners) in leadership skills in order to serve as co-faculty in the LEND project. Interested families should contact Molly Cole, Associate Director, at 860-679-1595 or mcole@uchc.edu.