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NIDRR Collaboration Meeting NotesSt. Louis, Missouri, Enabling Mobility Center
David Gray PI for NIDRR AT in the Community The NIDRR funded AT in the Community DRRP project that is a cooperative venture between Paraquad and Washington University was described. The collaborating partners co-fund a community facility that is called the Enabling Mobility Center (EMC). As background, Dr. Gray described the origins of the assessment tools being checked for reliability and validity. For example, the Facilitators and Barriers Survey (FABS) – asks about barriers and frequency, but too general (only asking about restaurants, doctor’s offices, etc as groups). For the new surveys, environmental factors are specific places – specific restaurants or doctors offices that the participant uses and ask the participant to identify. This specificity allows a comparison of the type of mobility device that is better for participation in activities that take place in certain environments. The survey also asks the level of satisfaction and how much choice the participant has in going to sites in their community. Progress on the reliability of the assessment tools was provided that shows high internal consistency for the assessment tools. In summary, the research portion of the project has demonstrated excellent results and is on course for the remaining three years of the project period. A second objective of the AT in the Community project is to provide education experiences for the researchers doing work on AT outcomes and for people with disabilities in our community. The educational conference sponsored by the EMC in October 2002 brought together the leading scientists in the US, Canada and Australia who are developing ad using AT outcome assessment and evaluation tools. A report of the presentations is being prepared for distribution. Immediately after this meeting, we will be sponsoring an Assistive Technology Fair where vendors of AT, therapies, services and community organizations offering services to people with disabilities will come together at the St. Louis main convention center, America’s Center. This AT Fair was a collective effort on many groups in the St. Louis area (note: over 850 people attended and many were people with mobility, visual and hearing impairments. The difference between this and vendor sponsored technology event is that people with disabilities planned, managed and controlled this event. We have had many calls and letters supporting the AT Fair and requests to hold another AT Fair ext year). The third part of the AT in the Community is training people with disabilities on the latest development on mobility AT and in the use of AT. The EMC has employees of Paraquad working on the research project as well as the education and training aspects. The EMC has sponsored many device demonstrations over the past year and will continue to do so. The device demonstrations cover mobility devices as well as many other types of AT (e.g., voice entry, visual display enlarger, seating, in-home medical supplies). The area of community involvement where we have experienced some difficulty is recruiting people with disabilities to attend course work in research and assistive technologies. We are going to put our educational coursework materials on our web site, offer training at community sites (Paraquad and ILCs in Missouri and southern Illinois). One of the social policy questions that could be addressed by the empirical evidence assembled through our study is to advocate for payment by third party payers for mobility devices that enhance participation in many activities rather tan activities of daily living or these deemed to be medically necessary. We want the insurance companies to have evidence to help them determine what AT they buy, but the cash goes to the consumer, not the DME. Further, we would like use our data to support increased control of resources by people with mobility impairments, specifically control over the type of mobility device they purchase. The idea is to have a program that is similar to the cash and counseling method for funding personal assistant services that is being tested in three states. Amy Noakes Project Coordinator Our ILC is more involved in research, but the biggest problem was presented in beginning the research and getting buy-in from the ILCs in California. They were not interested in conducting research because they are traditionally grass-roots activists. However, now we have 20 (plus some– we have several additional centers since the meeting) ILCs participating in the third year project – a large scale consumer survey about AT usage. This includes the core group (8 centers) of ILCs that participated in our second year project, which was 43 focus groups with 333 participants throughout California on the usage of AT. The results from the focus group going to publish the results in a book (hopefully in March 2004). We are currently training 20 ILCs to conduct survey administration (AT consumer survey). The training includes:
Because this is an action-oriented project; everything we learn is disseminated to the consumer and other stakeholders. Our number one stakeholder is the consumers – which we reach through the ILCs. Our goal in Year 4 is to provide legislators with data so that the AT Network can stay funded and to present both qualitative/quantitative data to enact systems changes regarding AT in California. One of the issues we are looking at includes changing the definition of AT to encompass a more holistic approach to funding. The focus groups purpose was to get qualitative data and to hear stories from the people who are directly impacted by the AT system in California People/consumers were excited to know that people wanted to hear their opinions, and that someone was asking for their solutions to the barriers they faced – and most of the time we found that AT was not the first barrier/ issue – it was basic necessities consumers needed instead. There was a question about the honesty of the focus group participants. I am not sure what this means. I don’t recall honesty coming into the conversation. I do recall someone asking about the integrity of the stories, and my response being, why would they lie to us? The participants are believed to be honest because it is enabling them to have a system change in California. In order for us to fully capture the comments made in the focus groups, we sent the focus group transcripts to the group participants and asked them to review it to ensure that no comments were left out. Kathy Rust gave input to Chris O’Hanlon’s question about the purpose of focus groups and why were we conducting this research and why should people with disabilities participate in this research since they have already been “researched to death”: qualitative research is recognized as valid data. Research outcomes are both qualitative and quantitative – stories with the numbers provide better results. David Gray: There have to be answers to the participants’ specific problems which are based on empirical evidence of effectiveness of the AT. Such evidence provides consumer with better AT and policy advocates evidence for modifying social polices. Amy Noakes: people want to know why they should participate. The answer CR4AT provides to them is that “Information is power”. The goal of the project is to help the consumer by providing them with the research results affecting the consumer directly in their affairs in obtaining AT. The ILCs are primary information resources to these consumers. Our goal is to get people with disabilities to be the researchers as well as the advocates– there will be more buy-in into conducting research if the people who are directly being affected are the ones conducting the research. It will provide more empathy and sensitivity for the participants. Chris O’Hanlon: he understands that people with disabilities are becoming the researchers, but the problem arises when the participants are being hindered by researchers – who also have a disability and should understand the process (assuming they had been through it prior to becoming the researcher). People with disabilities become enemies. Amy Noakes: consumers are their own experts. Research has changed - those conducting the research are the ones directly impacted by the research. CR4AT is promoting to through the ILCs that research is no longer being done on consumers with disabilities, but with consumers with disabilities. Because of the research being introduced to the ILCS, they are making never before made connections and outreach to communities they have never connected with before. Bambang Parmanto PI for IT for Independence Pittsburgh conducted a focus group to survey barriers to the use of computers and the Internet. They also surveyed 1520 websites. 400/1500 claimed to be fully accessible, but the data conflicts when different tools are used to measure the accessibility of the same sites. It was determined that the problem is caused by the definition of accessibility and the measurement tool. Pittsburgh’s measurement accounts for and scores every page of the web site. The European sites tend to be more accessible (i.e. BBC = 1.0). The ideal score of the Web Accessibility Barrier (WAB) score is 0; the higher the score, the worse the accessibility. Our national government seems to listen to efficacy as demonstrated by their web sites, which are generally more accessible. As a result of their attempt at accessibility, the government sites tend to be bland and unattractive. Non-government based web sites are less accessible. How long is it going to take for the ADA to apply to the Internet? The top priority for web page accessibility is for those who have visual impairments. Thus far, no studies exist to measure the accessibility by comparing a large number of websites. Instead the current studies count the number of violations per website and do not consider either the complexity or the size. Pittsburgh wants to develop a fair measurement tool that is capable of comparing similar entities of websites, and they want to conduct the study on a large scale. Pittsburgh hypothesizes that as the technology becomes more complicated the accessibility of the website decreases. The Pittsburgh study starts with evaluating consumer health and health websites (i.e. doctoronnet.com), then will follow with an expansion of samples, going from scientific journal websites to general websites. When analyzing these websites, Pittsburgh will look at the distribution of the different barriers and the corrections that have the highest impact. When expanding to the general websites, one thing to consider is the correlation between accessibility and popularity. Popularity is measured by the Alexa Rank and is based on the daily visiting volume. Importance is measured by the Google™ PageRank and is based on the inbound and outbound hyperlinks. Looking at the average WAB scores, education and government have the best scores, while portal and community sites have the worst. There were two clusters detected by ANOVA – lower WAB score and higher WAB score. The lower category included governmental and educational sites, while the other websites composed the higher WAB score group. Pittsburgh determined correlations between accessibility and popularity. There is a correlation between the WAB score and Alexa ranking (p < 0.01). However, there is no correlation between the WAB score and Google ™ PageRank, and there is more research needed in this area.
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