December 4-7 in Washington, DC
The AUCD 2016 Conference, "Navigating Change: Building our Future Together," highlights both the change that comes at the end of a Presidential term as well as our need to work together to create a future in which children and adults with disabilities are able to participate fully in all aspects of life as valued members of their communities. Join us to engage in powerful, important, and inspiring personal and professional discourse on December 4-7 in Washington, DC.
During the month of April, AUCD joins people with autism, their families, and those who serve and support them to increase public acceptance and appreciation of the needs of individuals with autism and their families, and recognition of the diverse range of abilities and talents people with autism possess.
At Camp Yes And, teens and teachers learn improv as a way to develop social communication skills and transform teaching and learning. The camp is designed to support verbal teens (ages 13-18) on the autism spectrum, or those with a similar diagnosis, who would benefit from support around building social communication skills.
HANDS in Autism Model in Practice: Intensive Weeklong Training for School Personnel & Community Providers
An intensive training that focuses on providing hands-on experience and coaching in a simulated community & home environment. While the program includes traditional instructional methods such as lectures and discussion, the emphasis of training is incorporating interactive and hands-on application to foster increased participant knowledge and skill related to the process of making and supporting appropriate programming decisions for individuals with autism spectrum disorder (ASD) and other neurodevelopmental and behavioral disorders.
The first phase of the new grant awarded for the Autism Research Network for Behavioral Health (AIR-B) at UCLA has begun. Partnerships with community agencies have been established at all four sites of AIR-B, Los Angeles, Philadelphia, Rochester and Sacramento. Partners at each site include health and education agencies aimed at serving low income, primarily minority families of children with ASD and other disabilities. For example, in Los Angeles, UCLA researchers have established partnerships with South Central Los Angeles Regional Center (SLARC) and Fiesta Educativa along with a pre-existing partnership with Healthy African American Families (HAAF).
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.
At Boston Children�s Hospital�s Developmental Behavioral Pediatrics Fellowship, we are completing our second year of Community Advocacy Rounds, and taking it on the road! Community Advocacy Rounds is an educational series created for our trainees, focusing on topics most relevant to children with autism and developmental disabilities who are also among underserved populations. For 10-12 afternoons each year, trainees in our Developmental Behavioral Pediatrics Fellowship, Postdoctoral Psychology Fellowship, and LEND Program come together for team based learning. An equally interdisciplinary team (of social workers, psychologists, an educator, and a developmental pediatrician) leads each session.
The California Autism Professional Training and Information Network (CAPTAIN) is a statewide network created to support the understanding and use of evidence-based practices (EBPs) for individuals affected by Autism Spectrum Disorders (ASD). This multi-agency group was established as a result of California's participation in the CDC�s Act Early Regional Summit in 2009 where standardized training, dissemination and implementation of EBPs in autism was identified as a priority for the state. With subsequent funding from OSEP's National Professional Development Center for Autism Spectrum Disorders (NPDC � ASD) Training and Technical Assistance Grant in 2010-2012, six demonstration sites throughout the state were trained in the 24 (later 27) EBPs verified by NPDC -ASD to be effective for this population.
The Annual MCHB DBP Faculty and Fellows meeting was co-hosted by Stanford University and University of CA Davis in Palo Alto CA on March 9-11, 2016. The overall goals of the meeting are (1) to allow fellows to present their research projects to other fellows and faculty to get feedback on their projects and (2) to encourage networking among the faculty and fellows.
Recently, AUCD rolled out its Diversity and Inclusion Toolkit. The 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, one of which, university-based centers, is designed to cater directly to Leadership in Neurodevelopmental and Related Disabilities (LEND) and University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) programs.
People with disabilities make up almost 20% of the adult U.S. population, however most public health training programs do not include curricula addressing the health of people with disabilities and methods for including them in core public health efforts. This population has a higher incidence of chronic conditions and experience significant health disparities. AUCD's public health team is leading a capacity building project to assist the current public health workforce in learning more about people with disabilities and how to partner with them to address these health disparities.
Louisa Silva, M.D., M.P.H., Principal Investigator
To further our understanding of abnormal touch/pain responses in children with autism, our group undertook to obtain the first skin biopsies ever reported in autism.* Four children between the ages of 8 and 11 participated in our exploratory study. Biopsies were submitted for specialized evaluation of C-tactile fibers - small tactile nerves mediating pleasant touch, pain, and temperature. Remarkably, results in all four children showed 50% loss of small tactile nerves. This was not a large enough group to be able to explain tactile abnormalities in all children with autism. However, with these four children, results provided an explanation for difficulties with gentle touch involved in daily living, abnormal pain thresholds, and social delay on the basis of tactile loss. Results will be published in the Journal of Neurological Disorders next month . A larger case control study has been initiated.
In recognition of Autism Awareness Month, the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau is pleased to share this new infographic that highlights HRSA's investments to advance the goals of the Autism CARES Act.
AMCHP's the 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.
Dr. Novotny, a graduate of the University of Nebraska Medical Center and of the Johns Hopkins Bloomberg School of Public Health (MPH Epidemiology), is Professor Emeritus of Epidemiology and Biostatistics at San Diego State University and the University of California, San Diego. He is Board Certified in Preventive Medicine, has specialized in health systems development, non-communicable disease control, health diplomacy and served in the National Health Service Corps. He has first-hand knowledge of issues facing vulnerable and underserved individuals through his work and looks forward to continuing his service in his new role.
A Collection of Recommended Resources from Autism CARES Grantees
Last year, more than 40 Autism CARES grantees contributed to �Identifying Autism in Young Children,� a collection of useful resources for parents and professionals.g
Promoting Healthy Weight in Children and Youth with Autism Spectrum Disorder/ Developmental Disabilities: Current Research and Future DirectionsWednesday, May 11, 2016
1:00 p.m. - 4:00 p.m. ET
Location: Hilton Baltimore - 401 Pratt Street, Baltimore, M
Join colleagues for this special symposium focused on research and intervention strategies for encouraging healthy weight in children and youth with ASD/DD. This is a free symposium.
Location: Honolulu, HI
Pac Rim 2016 addresses the question: How do we innovate to bring more people from the margins of society into the center where they can live to their full potential? Find answers by connecting with a diverse group of people working on the front lines. By meeting face-to-face in the digital age. By inspiring others in telling your story, sharing your research or best practices. By getting excited by the energy and ideas in the room with you.
3:00 p.m. - 4:00 p.m.
Latinos represent the fastest growing population in the US, and Latino children are one of the fastest growing ASD populations. Despite this growth, they are one of the most underserved groups with respect to diagnostic services, health care, and specialty autism services. Dr. Sandy Magana will discuss the development of a culturally-based approach to addressing informational needs of Latino parents, which is essential in order to better support their children with ASD. She will present preliminary findings of a randomized controlled trial that is underway to evaluate the effectiveness of the proposed model.
New Dynamic Website Focuses on Total Child Health for Iowa's Children and Youth with Special Health Care Needs, their Families, and Providers
The Iowa Regional Autism Assistance Program (RAP) collaborated with Iowa�s Systems Integration Grant to create a new robust website, IowaChildHealthConnections.org. This dynamic website focuses on total child health for Iowa�s children and youth with a special health care need, their families, and the providers who care for them.
"Learn the Signs. Act Early." Ambassadors Expand the Reach of the Campaign
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.
A Physical Hallmark for Autism: More Evidence of Loss of the Sense of Touch from Western Oregon University
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.
Acting NIMH Director Selected to Chair the Interagency Autism Coordinating Committee; AUCD's Shannon Haworth among Newly Appointed Members
The U.S. Department of Health and Human Services (HHS) recently announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under the Autism CARES Act. After an open call for nominations for members of the public to serve on the committee, Secretary of Health and Human Services Sylvia M. Burwell appointed this group of individuals to provide her with advice to advance research, strengthen services, and increase opportunities for people on the autism spectrum. The public member appointees include three adults on the autism spectrum, several family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of national autism research, services, and advocacy organizations. Many of the appointed individuals serve dual roles, dedicating their professional careers to helping people on the autism spectrum because of their personal experiences with autism spectrum disorder (ASD). The first meeting of the new committee took place on November 17, 2015 in Rockville, Maryland.
AIR-B Engages Community to Bring Evidence Supported Interventions to Children with ASD and their Families
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.
AIR-P Network Activities
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 a particular emphasis on addressing disparities experienced by underserved minority and rural 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.
Article on Shared Decision Making Accepted for Publication
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).
Autism Friendly Training Takes Off
This article was written by Jennifer Lucarelli, MD, 2nd year DBP Fellow at Boston Children's Hospital.
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.
CDC Partners with AUCD to Increase the Capacity of Public Health Professionals to Include People with Disabilities in Planning Efforts
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).
Cincinnati LEND Program Receives Community Recognition for Childhood Care Provider Training
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). Cincinnati LEND, along with Fifth Third Bank, the Cincinnati Police Department, and State Farm Insurance, received the awards for collaborating with CAA on its mission to provide low-income assistance programs for families throughout Hamilton County.
Considering Culture in Autism Screening & Systems of Care: State Peer-to-Peer Exchange
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. On June 16-17, the Massachusetts HRSA Autism Planning Grant team and Act Early State team hosted the 2015 SPHARC Peer-to-Peer, which brought together seven state teams (CT, IA, MA, ME, MN, NH, and VA) to brainstorm and problem solve educating parents from culturally and linguistically diverse backgrounds about healthy developmental milestones in young children and reducing early identification barriers for autism and other developmental disorders.
Examining Parents' Experiences and Information Needs Regarding Early Identification of Developmental Delays: Qualitative Research to Inform a Public Health Campaign
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. In-depth interviews were conducted with parents of typically developing children, who reviewed campaign materials and provided feedback on appropriateness, appeal, and clarity with regard to the campaign's objectives.
Got Transition Releases New Resources for Young Adults and Health Care Providers
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.
Healthy Weight Research Network (HWRN) Update
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.
LEND Graduate and Faculty Recognized for Excellence in Curriculum Development for Nurse Practitioners
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.
Promising Practices for "Learn the Signs. Act Early."
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. Many of the activities in this collection represent the work of Act Early Ambassadors and State Systems grantees who found creative and effective solutions for implementing Learn the Signs. Act Early. with greatest potential impact using very modest resources. Please visit the Act Early Network webpage here to find the archived Act Early Forum Fall Webinar to hear from the CDC�s LTSAE team and LTSAE Ambassadors who developed and implemented effective Promising Practices.
Six Programs That Engage People with Disabilities, Family Members, and Community Professionals Awarded Supplementary Project Funds through AUCD
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 One essential characteristic of a leader is the constant desire to improve, and training programs that prepare students for leadership roles in the field of developmental disabilities are no exception. The nation's 43 Leadership Education in Neurodevelopmental Disabilities (LEND) and 10 Developmental-Behavioral Pediatrics (DBP) Programs provide long-term, graduate level training to over 3,000 students each year, as well as coordinated, interdisciplinary care to children with special health needs. For more than six decades, LENDs and DBPs have played a leading role in advancing our knowledge of and services for people with disabilities and their families as they teach clinical excellence, model inclusion, work across systems to promote quality services, and advance policy, research and practice.
The ACCESS project: Building Community-Based Autism Identification Teams
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. Each team includes a pediatrician, a mental health provider (either as regular team member or consultant), educational staff (an autism specialist, a speech pathologist and other educational staff as needed), and a parent partner. Currently each team evaluates 1-2 children per month, conducts a team conference to discuss diagnosis and an initial care plan including eligibility for educational autism services, and a family conference to review the results with the family. Our project�s goal is to establish a single, valid and timely process in the local community that determines both educational eligibility for autism services and a medical diagnosis for children up to 5 years of age.
Visit the Montana Autism Center
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."
Autism CARES Grantees Share Resources, Best Practices for Identification and Intervention
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.