Prevention & Wellness

News

• MN UCEDD Collaborates with The Arc on FINDS Report Revealing Caregiver Stress

  In 2017, the Research and Training Center on Community Living (RTC/CL) at the Institute on Community Integration (MN UCEDD) conducted an online survey in collaboration with The Arc of the United States in order to better understand the status of family caregivers of individuals with intellectual and developmental disabilities (I/DD) in the U.S. Known as the Family & Individual Needs for Disability Support (FINDS) study, the survey and newly released FINDS Community Report 2017 shed light on the experiences of families who provide supports to a family member with I/DD.

• Dreamer Dreaming Up Change for the Healthcare System (OR UCEDD)

  This summer I had the opportunity to be an intern for the University Center for Excellence in Developmental Disabilities (UCEDD) within the Institute on Development and Disability (IDD) at Oregon Health and Sciences University (OHSU). My role was with IDD's Diversity Task Force (IDTF) that is made up of providers, clinicians, faculty members, staff, and family members. The mission of the IDTF is as follows: As compassionate leaders in healthcare, we strive to provide innovative and comprehensive services in a welcoming environment. The diversity of life is valued here, and we are committed to making inclusion a priority so everyone at IDD feels comfortable, valued, and respected.

• Institute for Disability Studies Partners with Mississippi Gulf Coast Community College on Free Adventure Therapy Program (MS UCEDD)

  Challenge by choice. It is an empowering, yet frightening concept. On one hand, individuals decide whether to take a risk to overcome specific obstacles. On the other hand, they have the daunting task of facing their fears with the possibility of disappointment by not achieving their goal. What if the obstacles and fears were replaced by a low swinging log, a zipline 45 feet in the air, a kayak paddle, or a rock wall? Would the choice still be as challenging?

• "Bottom Dollars," an Award-winning Documentary on Inclusive Employment, is Screened Throughout Iowa:

  Tammie Amsbaugh, CDD/UCEDD Program Manager, helped the Rooted in Rights documentary tour the state

  CDD and the Iowa Department of Human Rights in partnership with the Iowa Developmental Disabilities Council and Disability Rights Iowa hosted the screening in eight cities around Iowa. This 2016 film calls for the phase out of the sub-minimum wages and sheltered workshops, and offers solutions for fair wages and inclusive employment. The documentary features personal stories and expert interviews with advocates that have been working to improve the employment opportunities for people with disabilities.

• MNLEND 2017-18 Forum: The 'F-Words' in Childhood Disability

  In the 21st century, people are embracing new ideas and new paradigms for the healthcare and disability fields. Guiding us are the 6 "F-Words" from the World Health Organization's (WHO) International Classification of Functioning Disability and Health (ICF) Framework: Function, Family, Fitness, Fun, Friends, and Future. The "F-Words" have been enthusiastically embraced by families, advocates' and colleagues' around the world.

• HRSA Issues Hurricane Resources for Children with Special Health Care Needs

  In collaboration with the HHS Office of the Assistant Secretary for Preparedness and Response, HRSA has developed a collection of resources informing hurricane response and recovery for families, organizations, and clinicians caring for children with special health care needs.

• Institute for Disability Studies First Self Advocate Coordinator

  NIFE MS Deputy Ambassador Taylor Carley is the Institute for Disability Studies at the University of Southern Mississippi first self-advocacy coordinator. Carley works on several of the institute's transition projects, but he is also the host of the weekly video series, Chit Chat Thursday with Taylor.

• Nutrition Advocate Reflects on NIFE MS Workshop Experience

  Arteya McGuire served as Nutrition Advocate for the workshop held in Greenwood in the Mississippi Delta. Twelve people attended the workshop. "The NIFE workshop was a great experience," said McGuire, who works for the Mississippi State Department of Health. "The workshop offered a lot of healthy tips that can be used in our communities."

• Georgetown University Certificate in Early Intervention Celebrates the Accomplishments of the Sixth Cohort of Participants! (Georgetown UCEDD)

  The Georgetown University Center for Child and Human Development honored the students who completed the 2017-2018 program with a celebration on June 15, 2018. The event was part of a day-long conference hosted by the Georgetown University Center for Excellance in Developmental Disabilities, the DC Developmental Disability Council, University Legal Services, the P & A for the District of Columbia, and the Quality Trust. Participants included alumni, faculty, and service providers from the DC area.

• The Opioid Crisis: A Child's Fight and a Mother's Gain

  Robin Adams tells of the challenges and joys of adopting a baby affected by his birth mother's opioid use. The drug test came back positive for opioids and the needle puncture sites in the young, pregnant woman's arms were infected. At just 92 pounds, neither she nor her unborn child were benefiting from any nutritional intake. She returned to her OB/GYN six weeks later, keeping few prenatal appointments in total. When she returned, she was prepared; she had another person's urine in her purse. But she fooled no one, and her physician offered to help her find treatment and recommended a facility where she could receive medication-assisted treatment (MAT) and medical care. She denied her drug use and rejected the referral.

• Coach to Communicate (C2C) (TX UCEDD)

  Dr. Jennifer Ganz is the project director for the Coach To Communicate project which provides a webinar and face-to-face/online individual parent coaching sessions at no cost for parents, caregivers, teachers, and service providers of children with autism spectrum disorder. Participants will be instructed in how to improve the communication skills of their own children. This project serves Texas parents, caregivers, teachers, or service providers who have a child up to age 22 with autism spectrum disorder or similar characteristics and who need instruction in communication skills. Coach to Communicate group photo

• The Direct Support Workforce Crisis is Focus of New Impact Issue from MN UCEDD

  The direct support workforce is crucial in providing daily supports to people with intellectual, developmental, and other disabilities in the U.S. as they live and participate in their communities. While demand for these supports has never been higher and will continue to grow, significant challenges exist in finding, keeping, and training Direct Support Professionals.

• Mailman Center Collaborates with Special Olympics on Youth Leadership Summit (FL UCEDD/LEND)

  The University of Miami Miller School of Medicine's Mailman Center for Child Development collaborated with Special Olympics in a youth leadership summit, which took place June 3 at UM's Donna E. Shalala Student Center. The purpose of the summit was to highlight the Unified Champion Schools program, which incorporates Special Olympics' sports, leadership and related activities that empower youth to be change agents in their communities.

• TIPS 4 Kids (Missouri LEND) Hosts Successful Leadership Project Poster Session

  TIPS 4 Kids, Missouri's LEND, hosted a poster session of trainee's yearlong leadership projects. Approximately 100 students, faculty, community stakeholders, and practitioners attended. Rep. Sara Walsh, of the Missouri House of Representatives, was also in attendance, and we look forward to future collaboration with her and other members of the Missouri House of Representatives.

Upcoming Events

Sex Talk for Self-Advocates #2  

Join us for Sex Talk for Self-Advocates Webinar #2. Using real self-advocate questions from a survey, three professional sexuality educators will answer questions about relationships and sexuality.

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Attachment, Neurodevelopment & Psychopathology Conference  

This 3-day course covers the development, prevention, and treatment of psychological disorder. It weaves together theory, human development, assessment, case examples, and treatment applications to reframe maladpative behavior in terms of strategies for self-protection. The course covers development from infancy to adulthood, emphasizing the process of adaptation and developmental pathways that carry risk for psychopathology.

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2018 Annual Coleman Institute Conference on Cognitive Disability and Technology  

REGISTRATION for the 2018 Coleman Conference is now open. For more information about this year's conference and to register, please visit: www.colemaninstitute.org

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AACPDM 72nd Annual Meeting  

The 2018 Scientific Program Committee is pleased to announce that the 72nd Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) will take place October 9-13, 2018 at the Duke Energy Convention Center in Cincinnati, Ohio. "Transformative Journeys" is the theme for the meeting.

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Past Events

Disability Inclusion: NIH All of Us Research Program  

Please join the Friends of NCBDDD for this webinar to inform disability and health organizations, researchers, public health practitioners and key influencers about the All of US Research Program, as well as the importance of including people with disabilities in this large inclusive research program. The American Association on Health and Disability (AAHD) is partnering with NIH to increase awareness about this important and inclusive national research program. The webinar will include information about ways the disability community can be engaged in this national effort across communities in the United States.

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Sex Talk for Self-Advocates Webinar #1  

Please join us for our first Sex Talk for Self-Advocates webinar! Using real self-advocate questions from a survey, we will have three professional sexuality educators answering questions about sexual relationships. The sexuality educators will talk about questions from the survey like: How do I meet someone? How do you know if someone is your boyfriend or girlfriend? What exactly does consent mean? How do I talk with my partner? Is a non-disabled partner at risk for having sex with a disabled partner? How to be gay?

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Social Determinants of Health among Individuals with Functional Impairments  

The APHA Disability Section will be hosting a webinar featuring three outstanding presenters! The purpose of these webinars is to promote learning and to provide an opportunity for students and Disability Section members to share their research throughout the year. This webinar will focus on Social Influences of Health and Wellbeing among Individuals with Functional Impairments. The moderator of this webinar is Erica Twardzik, MS. Erica is a doctoral candidate at the University of Michigan, where she works to advance health equity for adults with disabilities through research, education, and leadership.

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Sensory Modulation: An Underutilized Tool for Reducing Anxiety in People with Autism Spectrum Disorders (ASD) and other Intellectual and Developmental Disabilities (IDD)  

In this presentation, the nature and extent of anxiety related challenges that impact individuals with Autism Spectrum Disorders (ASD) and other Intellectual and Developmental Disabilities (IDD) will be briefly reviewed. How anxiety can be a major influence on the manifestation of externalizing behaviors will also be discussed. The relationship between atypical sensory profiles and anxiety, with a particular focus on over-arousal states, will be explored. Ways in which some simple and easy to use sensory modulation tactics and tools may be employed to help individuals with ASD and other IDD who present with significant anxiety and challenging behaviors will be shared.

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Latest Findings on Prevalence of Autism Spectrum Disorder and that Children receiving Developmental Monitoring and Developmental Screening Together are more likely to receive Early Intervention  

Daisy Christensen, Epidemiologist at NCBDDD at CDC, will present on the recent "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014" data release. The latest findings from the ADDM Network provide evidence that the prevalence of ASD is higher than previously reported estimates and continues to vary among certain racial/ethnic groups and communities. With prevalence of ASD ranging from 13.1 to 29.3 per 1,000 children aged 8 years in different communities throughout the United States, the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD. During the latter half of the webinar, Rebecca Wolf, Team Lead, "Learn the Signs. Act Early." at CDC, and Brian Barger, Director of Research and Evaluation at GSU's UCEDD, will present on the study and findings of, "Better Together: Developmental Screening and Monitoring Best Identify Children who need Early Intervention".

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Resources

• HRSA Issues Hurricane Resources for Children with Special Health Care Needs

  In collaboration with the HHS Office of the Assistant Secretary for Preparedness and Response, HRSA has developed a collection of resources informing hurricane response and recovery for families, organizations, and clinicians caring for children with special health care needs.

• Integrating Infectious Disease Prevention and Treatment into the Opioid Response

  The opioid crisis in the United States is devastating the lives of millions of Americans. Perhaps overshadowed by the alarming rise in overdoses and deaths is the accompanying numbers of injection-related infectious diseases. Opioid overdose deaths increased fivefold from 1999 to 2016, and new hepatitis C infections more than tripled from 2010 to 2016.

• 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.

• At-Risk Populations and Pandemic Influenza: Planning Guidance for State, Territorial, Tribal, and Local Health Departments
    from http://www.astho.org
• Center for Health Promotion Research for People with Disabilities
    from http://uic-chp.org
• Center on Health Promotion Research for Persons with Disabilities
    from http://uic-chp.org
• Health Handbook for Women with Disabilities
    from http://www.hesperian.org
• The AUCD Network: Promoting Wellness for Persons with Disabilities

  An abridged sampling for download and printing of wellness promotion activities

• Senator Harkin Reintroduces Promoting Wellness for Individuals with Disabilities Act

  Senator Harkin's floor statement.