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News and Notes 546 January 25

In observance of LibraryShelfie Day, NARIC staff snaps Shelfies, posting pictures sharing favorite spots in the library stacks, while filling document requests; This Just In... presents a study assessing racial/ethnic disparities in use of preventive services among adults living with cerebral palsy or spinal bifida; Research in Focus features researchers testing whether a group-based virtual exercise intervention could help people with spinal cord injury increase their physical activity; Minority Youth and Centers for Independent Living released series of research briefs, Making Data on Minority Youth More Accessible for Centers for Independent Living (CILs); GoodMaps at the project Precise Customized Navigation for All, Indoors and Outdoors awarded first prize at the Consumer Technology Foundation Pitch Competition for their Explorer app assisting people with visual disabilities in navigating indoor spaces; the Southeast ADA Regional Center hosts webinar, Americans with Disabilities Act (ADA) Title I: Employment, Disclosure, and Reasonable Accommodation; the National Research Center for Parents with Disabilities hosts webinar, Disabled Parenting Within Multigenerational Families; the Research and Education to Support the Science of Independent Living for Inclusion and Engagement National Center of Excellence RRTC hosts webinar, Built to Scale: Scaling Up Ariadne Labs' TeamBirth, discussing an innovative approach to improve communication and teamwork in childbirth; Increasing Adaptive Babycare Resources and Intervention Supports with Parents and Caregivers with Physical or Vision Disabilities seeks participants for surveys of individuals with disabilities who are parents of children aged 5 or younger and occupational therapists and assistive technologists/rehabilitation engineers providing services for parents; the Administration for Community Living (ACL) hosts Traumatic Brain Injury (TBI) Partners Day; the US Food and Drug Administration (FDA) conducts Patient Listening Sessions, during which people with and without disabilities may share their experiences to help FDA staff better understand what is most important to patients.

Date sent: 
2023-01-25
NARIC news: 

Today is #LibraryShelfie Day! First launched by the New York Public Library, this day celebrates the diversity of library collections and encourages people to post pictures of themselves sharing their favorite spot in the stacks. Today, your social media may be filled with Shelfies of all kinds: fiction collections, scientific discoveries, biographies and histories, journals, comics, and more. We think our special collection is Shelfie-worthy, too! We caught our Media and Information Services Manager snapping a few while filling document requests.

This Just In: 

Racial and ethnic inequities in use of preventive services among privately insured adults with a pediatric-onset disability. Annals of Family Medicine, Volume 20(5), Pgs. 430-437. NARIC Accession Number: J90160.New to the NARIC collection, this NIDILRR-funded study assessed racial/ethnic disparities in use of preventive services among adults living with cerebral palsy (CP) or spina bifida (SB), pediatric-onset conditions that cause permanent movement disorders. Outcomes of interest were: (1) any office visit, (2) any physical/occupational therapy, (3) wellness visit, (4) bone density screening, (5) cholesterol screening, and (6) diabetes screening. Researchers analyzed data from private insurance claims between 2007 and 2017 and found that the rate of preventive service use for all subpopulations of adults with CP or SB was low. Compared with White adults, Hispanic adults had lower odds of wellness visits but higher odds of diabetes screening. Compared with White adults, Black adults had lower odds of wellness visits and bone density screening. Interventions to address physical accessibility, adoption of telehealth, and increased clinician education may mitigate these disparities, particularly if initiatives target minority populations. Access the full abstract and ordering information in REHABDATA

Research in Focus: 
A Virtual, Group-Based Exercise Platform May Help People with Spinal Cord Injury Increase Their Physical Activity
In this week's Research In Focus, researchers tested whether a group-based virtual exercise intervention could help people with spinal cord injury exercise more often and improve their fitness.
 
Resource Highlight: 
Research Briefs: Making Data on Minority Youth More Accessible for Centers for Independent Living
The NIDILRR-funded project Minority Youth and Centers for Independent Living (90DPGE0013) released a series of research briefs, Making Data on Minority Youth More Accessible for Centers for Independent Living (CILs). The briefs summarize information about the education, employment, race, and ethnicity of transition-age youth with disabilities who live in a specific CIL's service delivery area. The briefs also compare this information to characteristics of CIL customers of all ages.
 
News items: 
NIDILRR Grantee Wins CES Pitch Competition
GoodMaps, a NIDILRR grantee on the project Precise Customized Navigation for All, Indoors and Outdoors (90IFDV0025), was awarded first place at the Consumer Technology Association Foundation Pitch Competition at the 2023 Consumer Electronics Show (CES). GoodMaps representatives won for the pitch of their Explorer app, which provides digital maps to assist people with visual disabilities in navigating indoor spaces. GoodMaps continues development of the Explorer app under their current NIDILRR grant.
 
Grantee event: 
Webinar: ADA Title I – Employment, Disclosure, and Reasonable Accommodation TOMORROW
The NIDILRR-funded Southeast ADA Regional Center (90DPAD0005) will host a webinar, Americans with Disabilities Act (ADA) Title I: Employment, Disclosure, and Reasonable Accommodation, January 26th, 10 – 11 am ET. Presenters will discuss disclosure and reasonable accommodations in the workplace. Presenters will address whether or not a person with a disability is required to disclose their disability, when to disclose, how to request reasonable accommodations, and when an accommodation is not reasonable, among other topics. Registration is free and required.
 
Webinar: Disabled Parenting Within Multigenerational Families
The NIDILRR-funded National Research Center for Parents with Disabilities (90DPCP0012) will host a webinar, Disabled Parenting Within Multigenerational Families, January 31st, 12 – 1 pm ET. Presenters will discuss the service gaps in home and community-based services and other factors that may contribute to adults with disabilities, including those who are parents, continuing to live with their families of origin. Panelists will share their experiences and discuss the policy implications. Registration is free and required.
 
Webinar: Built to Scale – Scaling Up Ariadne Labs' TeamBirth
The NIDILRR-funded Research and Education to Support the Science of Independent Living for Inclusion and Engagement: National Center of Excellence RRTC (90RTGE0003) will host a webinar, Built to Scale: Scaling Up Ariadne Labs' TeamBirth, February 7th, 1 – 2 pm ET. Presenters will discuss Ariadne Labs' TeamBirth, an innovative approach to improve communication and teamwork in childbirth and to ensure women with and without disabilities have shared input in decision-making. Presenters will share how TeamBirth operationalizes best practices that reduce inequities in childbirth outcomes. Registration is free and required.
 
Participate: 
Adaptive Babycare Surveys
The NIDILRR-funded project Increasing Adaptive Babycare Resources and Intervention Supports with Parents and Caregivers with Physical or Vision Disabilities (90IFDV0021) is conducting surveys about assessments and interventions for parents and caregivers with physical or visual disabilities. Separate surveys are available for individuals with disabilities who are parents of children aged 5 and younger, and for occupational therapists and assistive technologists/rehabilitation engineers who have provided assessment or intervention services for parents. Knowledge gained from these surveys will be used to enhance an existing web-based resource on services and equipment to support parenting and improve online resources and other educational materials for professionals. Additional information and eligibility criteria are available from the survey websites.
 
Elsewhere in the Community: 
ACL Announces TBI Partners Day 2023
The Administration for Community Living (ACL) will host Traumatic Brain Injury (TBI) Partners Day, February 28th, 12 – 4 pm ET. The virtual event will bring interested parties together to discuss important issues around TBI services, supports, and systems, and to learn from partners, brain injury survivors, family members, support networks, and state and federal representatives. The event will include sessions on aging, employment, the intersectionality of TBI and other medical and social issues, and peer support. ASL interpretation, live English captions, and live Spanish interpretation will be available. Registration is free and required.
 
FDA Patient Listening Session Program
The US Food and Drug Administration (FDA) conducts Patient Listening Sessions during which people with and without disabilities have opportunities to  share their experiences to help FDA staff better understand what is most important to patients. These sessions focus on patient experiences, perspectives, and needs related to their health. Summaries from previous sessions are available to review and include sessions focused on cystic fibrosis, lupus, and spinal muscular atrophy, among other disabilities and conditions. Sessions for Spring 2023 are currently being scheduled. Topics for upcoming sessions include spinal cord injury, sickle cell disease, and amyotrophic lateral sclerosis (ALS), among others, and sessions on specific topics may be requested.