Developments, December 2015
Tuesday, December 15, 2015
 |
|||||||||||||||||||||||
|
|||||||||||||||||||||||
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.
 AUCD | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910
|
|||||||||||||||||||||||
Pamela Smith, MSN, 2014 graduate of the North Carolina Leadership Education in Neurodevelopmental Disabilities (LEND) program and Michelle Franklin, MSN, NC-LEND community nurse practitioner faculty member, attended the American Academy of Developmental Medicine and Dentistry (AADMD) Global Summit on Innovations in Health and IDD Conference in Los Angeles, CA July 27‐29, 2015. 
The University of Washington LEND plays a critical role in supporting regional primary health providers who care for children with ASDs and their families. On October 10, 2015, the UW LEND collaborated with the Washington Department of Health Title V Medical Home Parent Partnership (MHPP) and the Washington Autism Alliance and Advocacy (WAAA) to offer a CME (7.75 hours) conference for primary care providers titled, "Caring for Children with Autism Spectrum Disorders in your Practice: Practical Strategies". Achieving geographic reach across the state, 120 participants from all 39 counties filled Seattle Children's Hospital Wright Auditorium for a day of exceptional, evidence-based learning. 
Children with Autism Spectrum Disorder (ASD) require increased health care services compared to children with other Special Health Care Needs. However, they often have difficulty accessing appropriate care for various reasons. At Boston Children's Hospital (BCH), anecdotes of delayed or missed care are common for our patients with ASD, due in part to parent concerns about their child's ability to tolerate hospital visits. To address this issue, the BCH Autism Spectrum Center launched an "Autism Friendly Hospital" initiative to support patients with ASD in the hospital setting. One component of the initiative is staff education and training for non-clinical personnel. These staff members are often the first contact for patients with ASD and their families, but may not be familiar with the symptoms of ASD or strategies to help patients tolerate visits.
Dr. Stephanie Weber and the Cincinnati LEND Program were in good company October 30, when they received a Prestigious Bridge Builder Award from the Cincinnati-Hamilton County Community Action Agency (CAA).
Authors Lauren M. Hubner, MD MPH, Heidi M. Feldman, MD PhD, and Lynne C. Huffman, MD, from the Developmental Behavioral Pediatrics Program at Lucile Packard Children's Hospital Stanford are pleased to announce that their manuscript entitled: "Parent-reported Shared Decision Making: Autism Spectrum Disorder and Other Neurodevelopmental Disorders" has been accepted for publication in Journal of Developmental Behavioral Pediatrics (JDBP).
In 2014, with support from AIR-P, network members developed six ASD toolkits on the following topics: sleep in adolescents, pica, vision exams, delivering feedback to families, and feeding behavior. Two evidence-based guidelines on the topics of treating children. 
The Autism Intervention Research Network for Behavioral Health (AIR-B) is led by researchers from several universities, with UCLA as the primary coordinating site. Over the last seven years, the AIR-B team has forged partnerships with school district and health care professionals across the country with the goal of bringing effective treatments into the community settings where children with autism spectrum disorder spend the most time. We continue this goal in the new AIR-B grant.
The Healthy Weight Research Network for Children with Autism Spectrum Disorder and other developmental disabilities (HWRN) was established in July 2013 with Autism CARES funding via the Maternal Child Health Bureau's (MCHB). The HWRN is led by researchers at the Eunice Kennedy Shriver Center at UMass Medical School, in collaboration with Tufts University School of Medicine. The HWRN's mission 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 purpose of this study was to assess the approach and materials of CDC's "Learn the Signs. Act Early." health education campaign, which aims to improve awareness of developmental milestones and early warning signs of developmental delay among parents of young children. Two phases of qualitative research were conducted. Focus groups assessed the campaign's objectives by exploring the experiences of parents with children who have developmental delays or disabilities to determine facilitators of and barriers to identification. 
To deepen our understanding of the difficulties with touch affecting children with ASD, we examined children's responses to touch on the face, hands and other areas. Touch is the sense that initiates social development in early life. It is touch on the face that stimulates the child to look at the face and listen to the voice of another person. And it is by engaging in face-to-face interaction that children first learn social and nonverbal communication skills.
Since 2008, AMCHP's SPHARC has organized the Peer-to-Peer Exchange Programs as a mechanism for state grantees to learn from one other about building systems of care for children and youth with autism, share lessons learned and best practices, and develop plans of action for moving ahead.
The Oregon Center for Children and Youth with Special Health Needs (OCCYSHN) at Oregon Health & Science University (OHSU) is working to support 8 community-based medical-educational teams to evaluate young children with possible autism spectrum disorder (ASD). This work has been funded by a MCHB state autism implementation grant
The North Carolina Autism State Implementation Grant (NC-SIG) trains early interventionists on autism diagnostic assessments and intervention. Targeted efforts have been made with the state's 16 Children's Developmental Services Agencies (CDSAs), which provide early intervention services to families across North Carolina's 100 counties. The NC Division of Public Health's Infant-Toddler Program funds the CDSAs.
Collaboration between Montana's Act Early Ambassador and the UCEDD, the Rural Institute for Inclusive Communities, has resulted in the targeted distribution of nearly 4,000 CDC/Act Early milestones brochures and hundreds of milestones booklets. A provider in rural Montana said, "I brought a stack of...Act Early brochures and [the staff] were all lit up like Christmas trees...[the materials] are being used and have been viewed with impressive responses."
AMCHP's State Public Health Autism Resource Center (SPHARC) has several new activities planned, along with presentations, webinars and technical assistance opportunities designed to aid and assist ASD/DD grantees. Below are upcoming events for the 2016 AMCHP Annual conference and new updates and features on the SPHARC website.
One in five Americans (over 54 million people) has a disability. However, many public health programs do not include them in their program design. This is particularly concerning, as people with disabilities are more likely to have health issues, including chronic conditions related to being overweight and physically inactive, as well as a higher prevalence of smoking. Very few public health professionals have received specific training on how to incorporate people with disabilities during their efforts to carry out the ten essential public health services outlined by the Office of Disease Prevention and Health Promotion (ODPHP).
Got Transition has partnered with the Office of Disability Employment (Department of Labor) and the Youth Transitions Collaborative to create a Transition QuickGuide for youth and young adults (ages 12-30), including those with disabilities and chronic health conditions. The QuickGuide includes information and resources about health insurance, self-care management, transition from pediatric to adult health care, decision-making, and career planning to help young people manage their health care needs in order to make their career goals a reality. A related joint letter from ODEP and HRSA's Maternal and Child Health Bureau emphasizes the importance of expanding access to health care services and work-based experiences for youth with chronic health conditions and disabilities.
"Birth to 5: Watch Me Thrive!" has been promoting universal, broad-band developmental and social-emotional screening in children ages 0 to 5 years across the health care, early childhood education and social service sectors. With the U.S. federal government and AAP combining forces to promote periodic developmental-behavioral screening, the next step is for the U.S. to address its capacity crisis for providing high-quality early intervention and learning services.
The Learn the Signs. Act Early. Promising Practices is a collection of locally inspired models and ideas that have been implemented and evaluated to varying degrees in programs and communities. A promising practice helps spread the reach of the LTSAE campaign and has the potential to positively impact families with young children and the organizations, health care professionals, and early care and education providers who serve them.
ITAC, in collaboration with SPHARC and HRSA-MCHB, hosted the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Grantee Meeting on July 16-17, 2015 in Bethesda, Md. This bi-annual meeting was an opportunity for 180 MCHB-funded Autism CARES legislation grantees - representing research, training, and state implementation stakeholders - to share information about activities within their respective network, discuss emerging trends, and facilitate meaningful collaboration. This year's theme was "Implementing Evidence-Based Practices in Real World Settings," and meeting activities addressed both identification and intervention.
AUCD's Diversity & Inclusion Toolkit is a website that provides concrete objectives, strategies, and resources to help you realize your goals related to diversity, equity, inclusion, and cultural and linguistic competence. Strategies and resources are aligned with the roles of three specific audiences: federal funders, national organizations, and university-based centers and programs in the disability community; though many others may benefit as well. 
AUCD, the CDC, and HRSA are excited to announce the RFA for the 2016-2018 cohort for the Act Early Ambassadors: State, Territorial, and Tribal Liaisons to CDC's "Learn the Signs. Act Early." Program. Please see the Act Early Ambassador Program overview below and the request for applications (see attached .pdf document) for detailed information. Please feel free to share the RFA with your colleagues who may be interested and qualified. specific audiences: federal funders, national organizations, and university-based centers and programs in the disability community; though many others may benefit as well. 
Since May 2015, the Learn the Signs. Act Early. Ambassadors distributed a total of 69,841 materials, and this is a 99.4 percent increase compared to the overall total of 39,984 materials distributed from June 2014 to November 2014. From December 2014 to April 30, 2015, approximately 12,868 target audience members have been reached. The Act Early Ambassadors reached 1,097 family service providers, 1,855 health care professionals, 4,272 early care and education providers, 5,571 parents of young children, and 25 media outlets. Learn the Signs. Act Early. materials are available in the following languages: Arabic, Korean, Portuguese, and Somali. Visit the Learn the Signs. Act Early. website to view and download these materials. 
HRSA
HRSA