Prevention & Wellness

News

• Local Partnership Leads to International Connections (MT UCEDD)

  In the fall of 2018, the Rural Institute for Inclusive Communities at the University of Montana (UM) and Summit Independent Living Center hosted Ms. Nguyen Thi Van, from Hanoi, Vietnam, who was visiting Missoula, MT as a Mansfield Center Professional Fellow. Van represents two organizations that provide vocational training and independent living skills for people with disabilities in Vietnam.

• OHSU UCEDD CAC Awards Community Grants for Good (OR UCEDD)

  The UCEDD in the Institute on Development and Disability at OHSU Community Advisory Committee, also known as the Community Partners Council (CPC), has been awarding small grants to the community for seven years now and has funded 32 community projects. At their most recent quarterly meeting, they voted to fund six projects this fiscal year through their Community Engagement Grant program.

• OHSU UCEDD Announces the Sexual Health Resources Hub is Live

  The UCEDD at Oregon Health & Science University is excited announce that the Sexual Health Resources hub, featured on our website, is live. Developed as part of the Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities (SHEIDD) project, a collaboration with Multnomah County in Portland, OR, this hub provides resources to promote holistic sexual health education for people with I/DD.

• Tuesdays With Liz: Jerry Alliston on Emergency Preparedness

  This episode of Tuesdays with Liz is dedicated to the importance of emergency preparedness for people with disabilities. Liz interviews Jerry Alliston (Community Education Director at the Mississippi UCEDD) about his experience and lessons learned during Hurricane Katrina in 2005.

• Access All Day (OH UCEDD/LEND)

  The LEND Program at the University of Cincinnati UCEDD provides training to Cincinnati Zoo and Botanical Garden staff to help make the zoo more accessible for people with disabilities and their families. The last two years, the zoo has hosted an Access for All Day, where they invite the community to take part in the progress they've made to make the zoo more accessible such as: adult changing tables, sensory friendly restrooms, planning maps, social narratives, visual supports, sensory bags and more.

• Promising Vanderbilt Kennedy Center (IDDRC, UCEDD, LEND) Study on Treating Core Symptoms in Rett Syndrome Supports Further Trials

  Vanderbilt Kennedy Center (IDDRC, UCEDD, LEND) Director Jeffrey Neul, M.D., Ph.D., and colleagues studied the safety and effectiveness of the drug trofinetide in female children and adolescents (age 5-15) with Rett syndrome (RTT). Findings were recently published in the journal Neurology and show promise for improving core features associated with the rare disease, supporting further trials.

Upcoming Events

Newborn Screening for Fragile X Syndrome and Other Developmental Disabilities  

Most professional believe that early intervention (EI) is essential to improving outcomes for children with intellectual and developmental disabilities (IDD) and their families. But how early is "early?" Should screening identify newborns with IDD, even before symptoms appear? Is there value in "pre-symptomatic" EI for children or families? Are pre-symptomatic treatments powerful enough to alter developmental trajectories in meaningful ways? Using fragile X syndrome to exemplify these issues, this presentation describes Early Check, a research program in which screening newborns for several disorders is offered to 120,000 families per year.

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Past Events

NEW EI/ECSE Standards- Why? When? Next Steps  

The Division for Early Childhood of the Council for Exceptional Children is in the process of developing the first ever, stand alone, Early Intervention/Early Childhood Special Education Personnel Preparation Standards. Learn more about the standards,what led to this important step forward for the EI/ECSE workforce and what it means to the Early Childhood Field/Systems. We will share opportunities to provide feedback to the DEC Standards Development Task Force.

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Continuing Education Seminar Room to Grow: Journey to Cultural and Linguistic Competency Conference "Ensuring Enclusion"  

Each year the Center for Diversity in Public Health Leadership Training organizes the Room to Grow: Journey to Cultural and Linguistic Competency. The conference brings national speakers to present on the latest research and practice related to addressing and reducing socially determined health disparities.

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Resources

• Joint Statement from Members of the Disability Community and Allies on Gun Violence Prevention Policy and Mental Health Disabilities

  All Americans, including people with disabilities, have a civil right to live in their communities and not be segregated or imprisoned simply because they have a disability. Building more institutions, as the Administration proposes, unjustly threatens the civil rights and freedom of people with mental health disabilities while doing nothing to reduce gun violence in this country.

  Joint Statement [download]
• New Materials on the Opioid Crisis and People with Disabilities for Consumers, Providers, and Community Organizations

  Three new issue briefs on medication treatment, peer support, and traumatic brain injury from the National Institute on Disability, Independent Living, and Rehabilitation Research grantee Brandeis University provide information for people with disabilities and their families, substance use treatment providers, and community organizations looking for resources on how the opioid crisis may be impacting people with disabilities.

• Public Health Surveillance of Prenatal Opioid Exposure in Mothers and Infants

  The US opioid crisis is the public health emergency of our time and requires urgent public health action to monitor and protect the most vulnerable Americans. We have witnessed a startling death toll in 2017 with 70 237 drug overdose deaths in the United States, of which two-thirds involved opioids. The devastating consequences of this epidemic for mothers and infants have received less attention. Increases in opioid use and misuse in pregnancy have paralleled the increases in the general population; at delivery hospitalization, there were 4 times as many women with an opioid use disorder in 2014 compared with 1999. One of the most immediate and visible impacts of the opioid crisis on infants is the drug withdrawal in the newborn period, termed neonatal abstinence syndrome (NAS). On the basis of 2014 data, 1 newborn was diagnosed with NAS every 15 minutes in the United States, totaling about 32 000 infants annually with associated hospital costs estimated at $563 million.

  PrenatalOpioidExposure.pdf [download]
• 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.