We are excited to announce the new Voices of ASD Video Library, a collection of videos that explore the lives of individuals with ASD, with a focus on first person accounts and an exploration of what it means to live with ASD. Our goal is to deepen understanding among individuals with ASD, their families, and communities through the sharing of personal stories. The first video in the series profiles four adults living with autism as they share their personal stories including their challenges, strengths, advice and hopes/beliefs about the future.
Location: 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.
Location: Washington, DC
Promoting Collaboration Between Hospice and Palliative Care Providers and Adult Day Services for Individuals with Intellectual and Developmental DisabilitiesThursday, October 20, 2016
3:00 p.m. - 4:00 p.m. ET
While end-of-life issues are increasingly gaining more attention, people with intellectual and developmental disabilities (IDD) continue to receive significantly less consideration in research, education, and clinical practice compared with the general population. This is a growing concern especially since the sheer number of persons aging with IDD is expected to double between 2000 and 2030. Furthermore, as policies continue shifting to reflect a preference for home and community-based services as an alternative to institutionalization, adult day services (ADS) have the potential of becoming ideal settings for receipt of end-of-life care, especially for individuals with IDD. However, end-of-life care and advance planning most commonly occur in long-term care settings, for the general population, and have historically been less of a priority in ADS and residential services for people with IDD. This presentation discusses findings from a study around the attitudes of, and collaboration between, ADS and end-of-life providers for aging adults including persons with IDD. We will also explore how ADS may be a great pathway for delivering end-of-life care to the IDD population and provide guiding recommendations.
11:30 p.m - 1:00 p.m
An expanding body of research into suicidality and autism documents that individuals with ASD are at a significantly increased risk of suicide. Furthermore, traditional screening tools and mental health interventions have limited use in working with individuals with ASD. This webinar began with an understanding of the issue from the perspective of the autistic self-advocacy community, exploring the challenges to screening and prevention within the mental health service system as it is today. We also reviewed the epidemiological background of suicide as a national and international public health crisis and what we know about how it impacts the ASD/ID population. We heard about a NIMH study underway aimed at developing a suicide risk screening tool for youth and adults with ASD/ID/DD. Finally, we reviewed specific interventions to address suicidality in autistic children and adults followed by strategies for promoting positive mental health for individuals with ASD who are at risk.
2:00 p.m. - 3:00 p.m. ET
As part of Network activities, the AIR-P/ATN holds a monthly webinar series titled "Advances in Autism Research & Care" (AARC) which alternates autism research and care themes, and is available to all AIR-P/ATN network members, CAAI-sponsored programs, the entire LEND and DBP Fellowship networks, various other autism and pediatric organizations, collaborators, primary care providers, as well as autism advocates. Research webinars feature current AIR-P research study investigators, while care focused themes cover hot topics in the field of autism, and promote idea generation for future research.
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."