News and Notes 104 March 5
Information about Trisomy, including Trisomy 21 or Down syndrome, available from Support Organization for Trisomy (SOFT) as well as NARIC; three webcasts posted by the NIDRR-funded Rehabilitation Research and Training Center on Improving Measurement of Medical Rehabilitation Outcomes; NIDRR-funded Model Systems Knowledge Translation Center seeks adult African American and Latino/Hispanic participants with TBI for survey of health information needs; the National Youth Leadership Network and the Center for Rural Strategies offers training guide on living with disabilities in rural communities; NIDRR-funded research fellow publishes article on service dog use in the workplace in ISRN Rehabilitation; Life Expectancy Tool for individuals with SCI available from NIDRR-funded National Spinal Cord Injury Statistical Center (NSCISC); NIDRR-funded National Center for Parents with Disabilities and their Families to host conference on Families with Parental Mental Health Challenges; NIDRR-funded Great Lakes ADA Center to host webinar: The ADA and Religious Institutions.
March is Trisomy Awareness Month, organized by Support Organization for Trisomy (SOFT). According to the National Institute of Child Health and Human Development, trisomy refers to the presence of an extra gene in a person's DNA, resulting in 47 chromosomes instead of 46. This extra chromosome can cause a variety of issues ranging from mild intellectual or developmental disabilities to severe physical health problems. The most well known is Trisomy 21 or Down syndrome. Other trisomy disorders include Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome). SOFT has a package of information for families who are new to the diagnosis. You may also be interested in these publications on Down syndrome from the NIDRR community and other sources available from our collection. We also have a small collection of research on other trisomy disorders.
Rehabilitation Outcomes Measures Webcasts
The NIDRR-funded Rehabilitation Research and Training Center on Improving Measurement of Medical Rehabilitation Outcomes (H133B090024) recently completed and posted a series of three webcasts focused on the use of outcome measurements in rehabilitation. Fundamentals of Measurement in Rehabilitation for Older Adults, Demystifying Rasch Analysis: A Basic Overview for Rehabilitation Clinicians, and Using Client-Centered Practice and Patient-Reported Outcomes are archived in the Educational Resources section of the Rehabilitation Measures Database.
Study Highlights Elements of Successful Service Dog Partnerships in the Workplace
Margaret K. Glenn, PhD, a 2012 NIDRR Research Fellow (H133F120031), recently published findings from her NIDRR-funded project, Exploratory study of the elements of successful service dog use in the workplace in the 2013 issue of the open-access journal ISRN Rehabilitation. The study identified 68 elements that stakeholders perceived and rated to be important or highly important to successful service dog partnerships in the workplace.
NSCISC Debuts Life Expectancy Tool
The NIDRR-funded National Spinal Cord Injury Statistical Center (NSCISC) (H133A110002) has created a Life Expectancy Tool for individuals with SCI, clinicians, practitioners, and caregivers. The tool provides an estimate as to the life expectancy of a person with a spinal cord injury who is at least two years post-injury, has access to good-quality health care, is not on a ventilator, and has not regained all normal feeling and movement. The Life Expectancy Tool was developed from data collected and research conducted by the NIDRR-funded Spinal Cord Injury Model System Centers (H133A110006, H133N110006, H133N110014).
The ADA and Religious Institutions
The NIDRR-funded Great Lakes ADA Center (H133A110029) will host a webinar, The ADA and Religious Institutions, March 12th, 2-3:30 pm EST. This session will examine how the ADA applies to religious institutions and organizations with regards to Title I and Title III, as well as the Rehabilitation Act of 1973. Registration is free but required by March 11th. All previous sessions are archived on the Center's website.
Conference on Families with Parental Mental Health Challenges to Include Original Art Exhibit
The NIDRR-funded National Center for Parents with Disabilities and their Families will host the Fourth International Conference on Families with Parental Mental Health Challenges (PDF), April 25-27, in Berkeley, CA. The conference will include an exhibit of original artwork by parents with mental health challenges or children/adult children of such parents. Art may be submitted through March 25th. Registration for the conference is currently open.
African Americans and Latinos with TBI Health Information Needs Study
The NIDRR-funded Model Systems Knowledge Translation Center (H133A110004) is seeking African American and Latino/Hispanic individuals over 18 with traumatic brain injury (TBI) for a survey of their health information needs. The study includes a 60-minute telephone interview and questionnaire. Qualified participants will be compensated $75 for their time. For questions or to volunteer, call 202/403-5600 or email firstname.lastname@example.org.
Disability and Rural Communities - Making a Difference in Small Towns
The National Youth Leadership Network (NYLN) and the Center for Rural Strategies have released Disability and Rural Communities: Making a Difference in Small Towns (PDF). The 68-page training guide includes discussion and activities on advocacy, inclusion, interdependence, networking and community involvement, supportive relationships, leadership, and other relevant topics.