Prevention & Wellness

Screening for autism spectrum disorders (ASD) at 18 and 24 months has been a standard American Academy of Pediatrics recommendation since 2007. However, research over the last two decades about the early emergence of autism symptoms has prompted a number of researchers and clinicians to create screening instruments and strategies for earlier ages.

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 reaching underserved communities.

Children at risk of developmental disabilities or delays who receive both monitoring and screening are more likely to receive the early interventions they need than their peers who receive either monitoring or screening, according to a study led by Dr. Brian Barger-a researcher at the Georgia State University and Policy Fellow with the "Learn the Signs. Act Early." team at NCBDD.

Given that early caregiver concerns may be different for children who go on to receive a diagnosis of autism spectrum disorder versus another developmental disability, early caregiver concerns may differ for girls. Using a community-based sample of children (n = 241), we examined the extent to which gender differences may be related to caregiver concerns prior to a diagnosis of autism spectrum disorder or other developmental disability.

On December of 2017, several members from the Association of University Centers on Disabilities (AUCD) network, along with other professionals from various backgrounds, convened to form the Inclusive Health Project Workgroup. The purpose of this workgroup was to assist in creating inclusion principles and guidelines for implementing health-related activities for people with intellectual disabilities (ID). These principles and guidelines would serve to support national-level organizations to adopt and promote inclusive approaches to health for people with ID, and provide useful information for organizations on how to foster inclusion of people with ID in national organizations. This exceptional workgroup, which encompassed of directors and specialists from University Centers for Excellence in Developmental Disabilities (UCEDD), used both their professional and individual experiences in the realm of disabilities/ID to develop the Foundational Principles for Sustainable Inclusion of People with Intellectual Disabilities.

The PCPID has 31 members: 18 citizens, and 13 ex officio (federal government) members. A maximum of 21 citizen members is allowed. Citizen members are appointed by the President and serve for a maximum of two years. A variety of individuals are appointed as citizen members, including parents of individuals with intellectual disabilities, scientists and professionals from the field, community and business representatives, and systems advocates.

Over 230 people gathered for the 13th annual Nurturing Developing Minds conference in Greenville SC. These included professionals, family members, self-advocates, and current and past SC LEND trainees. This year's conference theme was Building Resiliency.

Colorado's JFK Partners LEND and UCEDD fellows and faculty visited the state capitol on Feb 28, 2018. JFK Partners collaborated with The Arc of Colorado and Alliance Colorado to host IDD Awareness Day 2018 with nearly 400 participants from each of the three agencies and invited guests from state agencies and the legislature.

"The family picnic is the first step of our family-led experiences for LEND Trainees. We welcomed 5 families during the picnic and solicited more in the process. Each LEND trainee will be matched with a family that fits their learning goals. Host families will teach the trainees about everyday life with children with neurodevelopmental disabilities. Trainees will play, eat, and enjoy family life with their host family and in the process they will learn deep lessons that they will carry through into their leadership. Trainees may also accompany children to appointments, school planning, activities, and family experiences," explains LEND Training Coordinator, Clinical Professor and occupational therapist Dr. Kathyrn Loukas.

Noted disability public policy advocate Jonathan Martinis, J.D., senior director for Law and Policy at the Burton Blatt Institute at Syracuse University, delivered the Vanderbilt Kennedy Center's (TN UCEDD, LEND, IDDRC) Martin Luther King, Jr., Commemorative Lecture "Supported Decision-Making: Protecting Rights, Ensuring Choices" in January 2018.

The Center for Leadership in Disability (CLD) in the School of Public Health at Georgia State University (GSU), co-hosted the 10th-annual Georgia Association of Positive Behavior Support (Georgia APBS) conference on November 28-29, 2017. The 2017 Georgia APBS Conference had over 100 presentations and 1,400 registrants. Georgia APBS is a network state under the national Association for Positive Behavior Support (www.apbs.org). According to the Association for Positive Behavior Support, positive behavior support is defined as "a set of research-based strategies used to increase quality of life and decrease problem behavior by teaching new skills and making changes in a person's environment.

Indiana University's Indiana School Mental Health Initiative (ISHMI) has partnered with The Lutheran Foundation to provide online resources to support schools and community partners as they address students' social, emotional, behavioral, and mental health needs.

The Research and Training Center on Disability in Rural Communities (RTC:Rural) at the University of Montana has produced two research summaries that provide an overview of their community-based research. Both documents can be downloaded as accessible PDFs here: Rural Disability and Solution-Focused Research.

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.

An abridged sampling for download and printing of wellness promotion activities

Senator Harkin's floor statement.