News and Notes 302 February 28

NARIC shares information about rare diseases and resources available from the NIDILRR community in its blog in observance of Rare Disease Day; Research in Focus looks at training program to help wheelchair users improve their transfer techniques; New England ADA Regional Center publishes report, An Examination of Disability in New England: A Demographic Study; principal investigator for multiple NIDILRR-funded projects co-authors Report to Congress on the Management of TBI in Children, published by the Centers for Disease Control and prevention (CDC); Midwest Regional Spinal Cord Injury Model System Center (MWRSCIS) producing 10-part video series, Voices of Experience - Living with Spinal Cord Injury, in collaboration with FacingDisability.com; Collaborative on Health Reform and Independent Living (CHRIL) seeks adult participants with disabilities for a survey about getting and using health insurance and health care services; Southeast ADA Regional Center hosts three-part webinar series, Show Me the Money! Advancing the ADA's Goal of Economic Self-Sufficiency - Financial Inclusion for People with Disabilities; Substance Abuse and Mental Health Services Administration (SAMHSA) seeks nominations of consumer, peer, and family leaders improving the lives of people with mental illness and substance use disorders for its Voice Awards Program.

Date sent: 
2018-02-28
NARIC news: 

Today is Rare Disease Day, recognized by the National Organization for Rare Disorders (NORD), Rare Diseases Europe, and other organizations to raise awareness about rare diseases and disorders and their impact on the lives of people around the world. Rare diseases aren't so rare: With more than 7,000 rare conditions, these organizations estimate that 1 in 10 Americans, and 1 in 20 people worldwide, will live with a rare disease or disorder at some point in their lives. We shared information about rare diseases and disorders, and research and resources available from the NIDILRR community and elsewhere, in our blog.

Research In Focus:
Even for Experienced Wheelchair Users, Learning New Techniques May Save Wrists, Arms, and Shoulders
For wheelchair users, transferring in and out of their chairs can take a toll on the upper body. This week's Research In Focus looks at a training program which may help even the most experienced wheelchair user improve their transfer techniques.

Resource Highlight: 

Aging and Disability in New England
The NIDILRR-funded New England ADA Regional Center (90DP0087) published a report, An Examination of Disability in New England: A Demographic Study (PDF), the result of an ongoing study using data from the US Census Bureau and other sources to identify the profile of people with disabilities in New England as a whole, and in each New England state. The study reveals that New England has the largest percentage of Baby Boomers (age 52-70) in the US. These and other findings from this study are also highlighted in a presentation, Aging, Disability, and the Americans with Disabilities Act, available from the study website.

News items: 

CDC Report Focuses on Childhood TBI
Ann Glang, PhD, principal investigator for multiple NIDILRR-funded projects focusing on traumatic brain injury (TBI) in childhood (90IF0067, 90IF0046, 90RT5004, H133G100153, H133A060075, H133G030179), co-authored a Report to Congress on the Management of TBI in Children, published by the Centers for Disease Control and Prevention (CDC). The report details the impact a TBI can have on children and their families, identifies gaps in care, provides opportunities for action to reduce gaps, and highlights key policy strategies to address the short- and long-term consequences of a TBI. The CDC report also includes detailed opportunities for action to improve care coordination after a TBI to maximize children’s potential for recovery and achievement of optimal outcomes. Other members of the NIDILRR community also provided additional input as external reviewers.

New Video Series Shares Voices of Experience in SCI
The NIDILRR-funded Midwest Regional Spinal Cord Injury Model System Center (MWRSCIS) (90SI5022) is producing a video series, Voices of Experience - Living with Spinal Cord Injury, in collaboration with FacingDisability.com. The 10-part video series focuses on the questions, issues, and concerns that are most important to hospitalized patients in the early days after SCI, such as the first days in the hospital, greatest fears, family relationships, and emotional reactions to injury. Previews of the first two videos in the series are available on YouTube. When complete, the video series will be made available online.

Grantee event: 

Webinar Series: Financial Inclusion for People with Disabilities
The NIDILRR-funded Southeast ADA Regional Center (90DP0090) will host a three-part webinar series, Show Me the Money! Advancing the ADA's Goal of Economic Self-Sufficiency - Financial Inclusion for People with Disabilities, March 8th, 15th, and 22nd, 2 - 3:30pm, ET. The series explores topics related to financial inclusion for people with disabilities, including creating a culture of financial inclusion and access; Money Smart, a financial education tool developed by the Federal Deposit Insurance Company (FDIC); and ABLE accounts. Registration is free and required for each webinar.

Participate: 

Health Care Survey
The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) (90DP0075) is conducting a survey of adults with disabilities about getting and using health insurance and health care services. The online survey is open to adults 18 to 62 years old with any type of disability and any type of health insurance. Responses are anonymous. Qualified participants may enter to win a $100 gift card.

Elsewhere in the Community: 

SAMHSA Voice Awards Nominations Open
The Substance Abuse and Mental Health Services Administration (SAMHSA) honors consumer, peer, and family leaders who are improving the lives of people with mental illness and substance use disorders in their communities through the Voice Awards Program. The awards program also recognizes television and film productions that educate the public about behavioral health and showcase that recovery is real and possible through treatment and recovery supports. The 2018 Voice Awards will pay special attention to individuals and entertainment productions that are raising awareness about serious mental illness and opioid use disorders. All nominations are open to anyone and are due by March 16th.