[Missouri-l] Fwd: Voting Period Closes Tomorrow--ICDR Stakeholder Event Reminder

[Chip Hailey]

>Delivered-To: chiphailey at cableone.net
>From: "AFB DirectConnect" <blemoine at afb.net>
>To: "AFB Subscriber" <afbweb at afb.net>
>Subject: Voting Period Closes Tomorrow--ICDR Stakeholder Event Reminder
>Date: Thu, 14 May 2009 09:27:26 -0400
>
>
>
>Voting Period Closes Tomorrow--ICDR Stakeholder Event Reminder
>
>Thank you to all who have already voted. For those who haven't had a 
>chance to vote yet, vote today to prioritize disability research 
>issues of greatest concern. The online voting period closes tomorrow, May 15th.
>
>Register to vote and vote today by simply providing your name and 
>e-mail address along with a username and password at 
><http://www.icdr.us/stakeholders/signup.aspx>www.icdr.us/stakeholders/signup.aspx.
>
>For more information about the federally mandated Interagency 
>Committee on Disability Research (ICDR) Web-based approach to 
>collect online disability research comments to assist in developing 
>a federal disability and rehabilitation 2010 research agenda, please 
>visit <http://www.icdr.us/stakeholders>www.icdr.us/stakeholders. 
>Registered participants are invited to review all research related 
>comments submitted and to vote on their top 10 concerns in each 
>topic area during the one-week timeframe from May 8th through May 15th.
>
>As an additional reminder, the American Foundation for the Blind 
>(AFB) submitted comments in each of the six topic areas. AFB's 
>comments are below in this e-mail message. We urge you to vote for 
>each of these comments during the online voting period and, in doing 
>so, advance a research agenda focused on expanding possibilities for 
>people with vision loss. You can vote up to three times for each 
>comment you support. Comments are organized in the ICDR online 
>voting area by topic. For further direction in finding AFB's 
>comments among the many comments posted in the ICDR online voting 
>area, please note that Dr. Stacy Kelly's name and American 
>Foundation for the Blind appear directly below each of the six 
>comments AFB submitted. Please find this name and organization when 
>casting your votes.
>
>AFB's Comments submitted to the Interagency Committee on Disability Research
>
>Topic One: Collaboration and Coordination Among Federal Agencies
>
>AFB Comment:
>
>Federal agencies should work together to conduct an annual, 
>longitudinal, national, and comprehensive disability survey 
>concerning the health needs, abilities, and characteristics of 
>individuals of all ages with disabilities, specifically including 
>the capacity to disaggregate all data pertaining to people with 
>vision loss and those with vision loss and additional disabilities. 
>There has not been a survey purposefully geared toward providing 
>disability-specific statistics since the 1994 and 1995 National 
>Health Interview Survey on Disability (NHIS-D) was conducted fifteen 
>years ago. This effort will require ongoing collaboration and 
>coordination among federal agencies. Federal agencies concerned with 
>disability and health should outline research priorities to 
>specifically include quality health care services for those living 
>with dual sensory impairment (hearing and vision loss). This 
>population is woefully underserved and infrequently studied. 
>Research priorities should include projects to develop and 
>disseminate information about promising new technologies that allow 
>full participation and independence for individuals with dual 
>sensory impairments. Finally, federal agencies concerned with health 
>care quality for people with disabilities should work together on 
>joint research initiatives that will establish principles of 
>universal design for health care facilities, programs, and 
>technologies that support patients to manage all facets of their health care.
>
>Topic Two: Health Information Technology and/or Electronic Health Records
>
>AFB Comment:
>
>Research is needed to evaluate the effectiveness of currently 
>available assistive technology or alternative methods to improve 
>access to prescription information, and evaluate user acceptance of 
>these available assistive technologies or alternative methods for 
>individuals with low vision, those who are blind, and those with 
>dual sensory impairments. People with vision loss frequently report 
>that they have mistakenly taken expired medications or incorrect 
>doses of medication because they are unable to see the expiration 
>dates or dosage information or visually tell the difference between 
>medicines. The development of regulatory standards can address this 
>problem by ensuring that medication labels and information are 
>accessible to individuals with vision loss. Research must be 
>conducted that assesses solutions for a proposed mandate that 
>medication labeling and related package insert information conform 
>to national accessibility standards to ensure safer and more 
>reliable medication identification and use by individuals with 
>vision loss, including those with dual sensory impairment. Federal 
>research and development resources should be targeted to spur design 
>of health technologies that are accessible to and usable by 
>individuals with vision loss, including those with dual sensory 
>impairment (e.g., adjustable small screen display size coupled with 
>high contrast, audible output, or tactile icons denoting poison or 
>dangerous drugs).
>
>Topic Three: Health Disparities
>
>AFB Comment:
>
>Research is needed to determine best practices and service delivery 
>models for the rapidly growing number of seniors with vision loss 
>and dual sensory impairment. Specifically, research is necessary to 
>better ensure uniform national Medicare reimbursement for vision 
>rehabilitation services offered by a continuum of qualified 
>providers, including vision rehabilitation professionals. Such 
>research can better ensure that eligible beneficiaries have access 
>to quality vision rehabilitation services in order to help them 
>achieve a greater degree of independence, prevent secondary 
>disabilities, as well as minimize barriers to care. Research should 
>assess the impact of the two-year Medicare waiting period for people 
>with disabilities. Resulting information can better ensure that 
>Medicare becomes available at the time of an individual's Social 
>Security Disability Insurance (SSDI) eligibility. Research should 
>examine access to and usage of the Internet by people with 
>disabilities, particularly access and use of broadband services, for 
>the purpose of measuring disparities in access to telehealth and 
>remote monitoring services experienced by people with disabilities.
>
>Topic Four: Health Promotion in the Workplace
>
>AFB Comment:
>
>A longitudinal study is needed to compare the health and well-being 
>of individuals with visual impairments over age 55 who continue to 
>work and those who choose to retire to determine whether the former 
>live longer or report higher levels of emotional or physical health 
>over time. The investigation should include a secondary study that 
>investigates the supports (familial, rehabilitative, and social) 
>that enable those who continue to work to do so. An investigation 
>into what impact workplace health promotion programs can have on 
>maintenance of employment for people with adventitious vision loss 
>is also needed; for example, to determine whether proactive 
>screenings for glaucoma can offer earlier detection and intervention 
>for workers so that they can avoid loss of work. Finally, research 
>is needed to investigate the impact of employment on the health and 
>well-being of young adults; for instance, are they more likely to 
>participate in community-based recreation and leisure activities 
>than their peers who are unemployed and on government-provided 
>health benefits, are they more likely to be involved in active 
>rather than passive leisure activities, and are they more likely to 
>be involved in long-term social relationships (marriage or communal 
>living). In addition, research is needed to determine whether fear 
>of losing government-provided health benefits inhibits youth in 
>transition from secondary or postsecondary training from securing employment.
>
>Topic Five: Employment and Health
>
>AFB Comment:
>
>Research is needed to demonstrate the positive impact that steady 
>employment purportedly has on the physical, social, and emotional 
>lives of people with visual impairments and to compare these 
>positive affects with the alternatives: poor health and well-being 
>as a consequence of long-term, chronic unemployment. Researchers 
>need to assess whether or not there is a correlation between the 
>time an individual spends out-of-work (unemployed) with increases in 
>trips to health care providers with physical or emotional complaints 
>and whether the nature of these visits is more serious or if 
>hospitalizations are of longer duration than for employed 
>individuals. Specific inquiries are needed to determine whether 
>individuals with visual impairments who are employed show evidence 
>of stronger, more robust social networks than individuals who are 
>unemployed. It would also be interesting to ascertain whether the 
>numbers of people in an individual's social support network decrease 
>in a rate commensurate to the number of months or years of 
>unemployment; in other words, do unemployed blind people tend to 
>become more socially isolated the longer they are out of work?
>
>Topic Six: Other Critical Research Issues
>
>AFB Comment:
>
>Research is needed on the prevalence of low-incidence disabilities, 
>such as the specific prevalence of legal blindness, total blindness, 
>and low vision among people of all ages with vision loss. In this 
>effort, it is important to be particularly careful to specifically 
>disaggregate research pertaining to people with vision loss and 
>those with vision loss and additional disabilities. It is necessary 
>to develop a quality appraisal tool of the research undertaken when 
>promoting best practice that includes both qualitative and 
>quantitative research pertaining to people with disabilities, being 
>particularly careful to specifically disaggregate research 
>pertaining to people with vision loss and those with vision loss and 
>additional disabilities. Research is needed to support the testing 
>and development of access standards or best practices for universal 
>design of commonly deployed information and communication technology 
>user interfaces. Research should focus on access standards for 
>visual displays (including small displays), operation controls 
>(including requirements for tactile identification) and 
>user-selectable menus (including strategies to maximize access 
>through audio output and visual characteristics). Research should 
>compare the effectiveness of reading with low vision (or optical) 
>devices and other technologies that involve the use of a lens with 
>the use of large print materials for the rapidly growing number of 
>people experiencing uncorrectable vision loss.
>