Developments, December 2016
December 22, 2016
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Developments is a newsletter for Autism CARES programs funded under MCHB. The content of this newsletter has been generated by program staff and trainees, and does not necessarily reflect the views and policies of HRSA-MCHB. No official support or endorsement by HRSA-MCHB is intended or should be inferred. This publication is funded in part by cooperative agreement #UA5MC11068.
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Every fall, the Boston Children's Hospital Division of Developmental Medicine fellows in Developmental Behavioral Pediatrics and Pediatric Psychology partner with the Brookline Public Schools (MA) to teach fourth graders about various disabilities. Fellows are trained in a hands-on curriculum and then spend several mornings implementing the curriculum to educate children about people with physical, sensory, or developmental disabilities. Understanding Our Differences is an interactive disability awareness curriculum that teaches children to "see the person and not the disability." Taught over several weeks, the activities harness a child's innate curiosity and desire to understand differences, coupled with lessons of how to engage with and respect peers with disabilities, the program focuses on acceptance in an inclusive world. 
The CT LEND has had an exciting new start this fall. Nine UCONN graduate students from various disciplines, two Yale Developmental-Behavioral Pediatric fellows, four community trainees, and four Human Services/Family Studies students from Goodwin College fill our conference room at UCONN Health each Friday. We welcome family faculty and several UCEDD staff members to each weekly seminar as well. Our true interdisciplinary cohort includes participants from an AUCD Auditory supplement and also a Diversity grant, several of whom are first generation college students. 
Following the recommendation of a Blue Ribbon Panel and an Executive Order from Gov. Mary Fallin, Oklahoma officials are developing a Web portal that could speed up service delivery for thousands who may have waited years to learn whether they qualify for a medical waiver. One of many issues addressed in April 2015 by the Governor's Blue Ribbon Panel for Developmental Disabilities was how to better serve thousands of Oklahomans seeking community services from the state Developmental Disabilities Services Division (DDSD) of the Oklahoma Department of Human Services. 
Nisonger LEND trainees and faculty Andrea Witwer, PhD and Jennifer Walton, MD, MPH, are involved in a multi-year project examining developmental screening and surveillance of Ohio children in early childhood settings. The goal of the project is to improve early identification of children with developmental delays. As more very young children spend time in childcare, providing training on evidence based screening to childcare providers can potentially provide an additional safety net to help identify children with delays early. Now in its third year this leadership project has completed a needs assessment of childcare providers and childcare center directors with regard to developmental surveillance and screening of children with developmental delays. 
For parents who have a child with autism, navigating the service system to find ways to help their child can be overwhelming.Within the Latino community, promotoras - community health workers who are indigenous to the community - help educate parents on autism and appropriate services. Two UIC researchers are going global by expanding a parent educational intervention designed for Latino parents in the U.S. to Colombia.
The Autism Intervention Research Network on Physical Health (AIR-P), led by Karen Kuhlthau, PhD, conducts research on evidence-based interventions to improve the physical health and well-being of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities, with an emphasis on underserved communities. Two key goals of the AIR-P network are to provide opportunities to develop collaborations and partnerships with clinicians and researchers and to support junior investigators in developing their research efforts to improve medical care of children with autism. 
The AIR-B3 network consists of 5 sites--- UCLA, UC Davis, University of Pennsylvania, Drexel University and University of Rochester. We have been actively preparing for the intervention studies we proposed, Mind the Gap and Building Better Bridges. Both of these intervention teams have been collecting pilot data, and refining the interventions which focus on the gap between diagnosis and services for many low-resourced families (Mind the Gap), and in maintaining continuity between major schooling transitions, such as between preschool and Kindergarten, elementary to secondary school (Building Better Bridges).
The Healthy Weight Research Network (HWRN), coordinated by the E.K. Shriver Center at UMass Medical School and Tufts University School of Medicine, was refunded for the next 5 years from the Maternal Child Health Bureau. The mission of the HWRN is to advance the understanding of obesity risk factors in children with ASD and other developmental disabilities, to promote the development of evidence-based solutions to achieve healthy weight in this population, and to disseminate research findings to broad and diverse audiences.
The Health Care Transitions Research Network (HCT-RN) for Autism Spectrum Disorder (ASD) and Other Developmental Disabilities was funded to support the creation of an interdisciplinary, multicenter research forum for scientific collaboration and infrastructure-building with a focus on research designed to improve health care transitions and promote an optimal transition to adulthood (including physical, psychosocial, educational, and vocational outcomes) among youth and young adults with autism spectrum disorder (ASD). Since April 2016, our network has been actively engaged in the following research and practice improvement efforts related to the transition to adulthood of youth with ASD.
AMCHP's State Public Health Autism Resource Center (SPHARC) has released several new resources and technical assistance opportunities designed to aid and assist ASD/DD grantees.
SPHARC, in partnership with HRSA, recently held an October in-person kick-off meeting in Washington, DC for the new Autism Community of Learners state grantee cohort. This meeting helped lay the ground work for national partner and peer-to-peer support around grantee activities for the project period, which focus on implementation three key evidence-based/informed strategies: Shared Resource, Family Navigator and Telemedicine/Telehealth. 
Milestones in Action is a FREE image library that features photos and videos of children demonstrating developmental milestones from 2 months to 5 years of age. This tool was created to help parents, early care and education providers, and healthcare providers identify developmental milestones in children and know if there is cause for concern.
The Center for Excellence in Developmental Disabilities (CEDD) at the UC Davis MIND Institute was awarded a Learn the Signs / Act Early (LTSAE) grant from the Association of Maternal and Child Health Programs (AMCHP) for 2016-2018 to support the dissemination of LTSAE resources designed to increase parent-engaged developmental monitoring. CEDD is partnering with the California Autism Professional Training and Information Network (CAPTAIN), the State LTSAE Ambassadors, the LEND at UC Davis and the LEND at USC in this effort. 
The Sibling Leadership Network (SLN) receives lots of questions about the Family and Medical Leave Act (FMLA) as it applies to siblings of people with disabilities. To assist siblings in understanding more about FMLA, we compiled responses to some of the most commonly asked questions as a reference.
The University of California San Diego/Rady Children's Hospital with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) partnered with Got Transition to develop a new pediatric Maintenance of Certification (MOC) Part 4 Module on transition. The web-based activity - "Transitioning Youth from Pediatric to Adult-Centered Care - will evaluate adequacy of participant documentation of patients' transition from pediatric to adult centered care within the 6 Core Element framework developed by Got Transition: Center for Health Care Transition Improvement. Eligible participants include clinicians who actively evaluate pediatric patients with chronic diseases on a frequent enough basis to report data on 30 patient visits over a year period. 
The 2016 Autism CARES Virtual Meeting will be held virtually (i.e. through an online portal) on Thursday, July 21 as a half-day event exploring the topic of transition. This will be an opportunity for MCHB-funded CARES legislation grantees (representing research, training, and state implementation stakeholders) to share information about activities within their respective networks, discuss emerging trends, and facilitate meaningful collaboration
There is an urgent need to educate public health practitioners on developmental monitoring, screening, and early identification of the health complications for infants and children affected by Zika. Babies affected by Zika may experience a spectrum of needs from the most severe cases of microcephaly, to vision problems, hearing loss, seizures, intellectual disabilities, reduced speech and language abilities, and other long-term developmental disabilities. Even though babies affected by Zika may look typical at birth, subtle changes that turn into serious health problems could occur as they become older
The "Learn the Signs. Act Early." Team is pleased to announce the completion of its project to translate and adapt the Milestone checklists, Milestones brochure, and tip sheets (How to Help Your Child & How to Talk to the Doctor) into Vietnamese. These materials were professionally translated and adapted in consultation with a small group of Vietnamese parents of young children and a group of Vietnamese subject matter experts
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