News and Notes 351 February 27

In observance of International Rare Disease Day, NARIC has resources, from NIDILRR grantees and elsewhere to help bridge gaps in the coordination of services to overcome the challenges of living with a rare disorder; Research in Focus features parents of children with autism sharing their experience with programs and services offered under the Medicaid Home and Community-Based Waivers program; the Rehabilitation Research and Training Center on Community Living and Participation of People with Serious Mental Illness (TU Collaborative) publishes Conversations About Intimacy and Sexuality: A Training Toolkit Using Motivational Interviewing (MI); research from the Rehabilitation Engineering Research Center for Wireless Inclusive Technologies (Wireless RERC) is featured in Phones still aren't quite right for people with disabilities in online magazine Futurity; NIDILRR Switzer Fellow receives 2019 Early Career Award from the International Neuropsychological Society (INS); the Southwest ADA Regional Center hosts Episode 66 of the ADA Live! webcast, Theme Parks and Accessibility, including a discussion on navigating Tennessee's Dollywood theme park; the Rehabilitation Engineering Research Center on Technologies to Support Successful Aging-in-Place with Long-Term Disability (RERC TechSAge) seeks participants for interview study on everyday challenges faced by Deaf/hard-of-hearing seniors as they age; the World Health Organization (WHO) declares March 3rd as World Hearing Day, focusing on hearing loss screening, including the release of HearWHO, a free app for checking hearing and practicing safe listening.

Date sent: 
2019-02-27
NARIC news: 

Tomorrow is International Rare Disease Day, coordinated by EURORDIS, to draw attention to disorders that affect a small percentage of the population and may not receive the attention or research funding of more common disorders. Though the conditions may be uncommon, the families who are living with these disorders face many of the same challenges as the wider disability community: finding support services, accessing benefits, coordinating between health care providers, and finding technology solutions to support independence. The theme for Rare Disease Day 2019 is Bridging Health and Social Care, aiming to bridge the gaps in the coordination of medical, social, and support services to tackle the challenges of living with a rare disorder. Our information specialists assist patrons every day in finding resources in their community to help bridge those gaps, including research-based resources from NIDILRR grantees and elsewhere. Contact us today by phone, email, chat, or social media to learn how we can help!

Research In Focus:
Home and Community Based Waivers May Make Life Easier for Families of Children with Autism
In this week's Research In Focus, parents shared their experience with programs and services offered under the Medicaid Home and Community-Based Waivers program and the positive impact the program had on family life.

Resource Highlight: 

Conversations About Intimacy and Sexuality: A Training Toolkit Using MI
The NIDILRR-funded Rehabilitation Research and Training Center on Community Living and Participation of People with Serious Mental Illness (TU Collaborative) (90RTCP0001) has published Conversations About Intimacy and Sexuality: A Training Toolkit Using Motivational Interviewing (MI). The toolkit is designed to prepare direct service professionals to have discussions with people with mental health conditions on the topics of intimacy and sexuality. The toolkit was informed by the motivational interviewing technique and includes experiential exercises with instructions, evaluation forms, resources, and references to be used by trainers.

News items: 

Wireless RERC Research Spotlights the Need for Mobile Phone Accessibility
Research from the NIDILRR-funded Rehabilitation Engineering Research Center for Wireless Inclusive Technologies (Wireless RERC) (90RT5025) is featured in Phones still aren't quite right for people with disabilities, published in Futurity - an online magazine that features research news from leading universities. The article highlights Wireless RERC research that found that, while accessibility has improved for phones offered by traditional wireless carriers, phones offered through the federally-subsidized Lifeline program for low income people fell short in nearly every accessibility category. In addition, only 17% of Lifeline phones included access to potentially lifesaving Wireless Emergency Alert notifications.

NIDILRR Researcher Receives INS Early Career Award
NIDILRR Switzer Fellow Ekaterina Dobryakova, PhD, (90SF00009) received the 2019 Early Career Award from the International Neuropsychological Society (INS). The Early Career award recognizes contributions in research, education, or service in the field of neuropsychology. Dr. Dobryakova was recognized for her ongoing research on the impact of feedback and fatigue on rehabilitation outcomes of individuals with traumatic brain injury (TBI) and multiple sclerosis, including her NIDILRR-funded research on motivational influences on cognitive fatigue in individuals with TBI.

Grantee event: 

ADA Live! Theme Parks and Accessibility
The NIDILRR-funded Southeast ADA Regional Center (90DP0090) will host Episode 66 of the ADA Live! webcast, Theme Parks and Accessibility, March 6th, 1-1:30pm ET. The Americans with Disabilities Act (ADA) ensures equality for people with disabilities at places of public accommodation, including theme parks. This includes providing inclusive experiences from going online to plan a visit and purchase tickets to entering and navigating the park. Presenters will discuss how the Dollywood theme park in Tennessee ensures a memorable experience for all. No registration is required for the webcast. Questions may be submitted in advance.

Participate: 

Interviews with Deaf/Hard-of-Hearing Older Adults
The NIDILRR-funded Rehabilitation Engineering Research Center on Technologies to Support Successful Aging-in-Place with Long-Term Disability (RERC TechSAge) (90RE5016) is conducting an interview study to explore the everyday challenges that Deaf/hard-of-hearing seniors may experience as they age. The study consists of questionnaires and an interview conducted in person or by video phone. Eligible participants must be between the ages of 60 and 79 and must have become Deaf or hard-of-hearing before age 50. Participants must also be US residents and use American Sign Language (ASL) as their primary language for communication. Qualified participants will be compensated for their time. For more information, contact Elena Remillard at elena.remillard@design.gatech.edu or 404/385-2564 (voice).

Elsewhere in the Community: 

March 3rd is World Hearing Day 2019
The World Health Organization (WHO) has declared March 3rd as World Hearing Day, drawing attention to the importance of early identification and intervention for hearing loss. Events in the US and internationally will focus on screening for hearing loss, including release of HearWHO, a free app which allows people to check their hearing and practice safe listening. The National Institute on Deafness and Other Communication Disorders (NIDCD) and the Centers for Disease Control and Prevention (CDC) are joining in recognizing World Hearing Day with resources in English and Spanish. NIDCD, CDC, WHO, and other organizations will also participate in #Wiki4WorldHearingDay2019, a joint initiative to improve Wikipedia content on Deafness and hearing health.