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NIDRR Collaboration Meeting Notes

St. Louis, Missouri, Enabling Mobility Center
September 19, 2003


On September 19, 2003, a collaborative meeting was held among several representatives of the NIDRR assistive technology grantees as well as representatives from Iowa and Missouri independent living centers. The meeting was coordinated by the University of Iowa Community-Based Resource Center and the Washington University/Paraquad “Assistive Technology in the Community” grant team. The purpose of the gathering was to explore opportunities for collaboration among the grantees and to attend the Assistive Technology Consumer Fair on September 20, 2003. Below are the notes from key speakers.

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David Gray

PI for NIDRR AT in the Community
Washington University in St. Louis
314-286-1658

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.

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Amy Noakes

Project Coordinator
California ILC CRYAT
916-325-1690

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.

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Bambang Parmanto

PI for IT for Independence
Assistant Professor
University of Pittsburgh
412-383-6649

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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Chris O'Hanlon

Director
Iowa City CIL: The Evertconner CIL
319-338-3870

I just wanted to say that it was a very good meeting to be a part of we need more like it. The truth is that it is very difficult to translate what is said or intended from what is heard. That takes some time for people to get to understand each other. As an artist I have learned that regardless of what I paint the people who view it will only hear and see based on their perspective and what they have brought with them to the process. I raised some question about what people with disabilities say in interviews and point out that we as PWD have learned how to play the research game. We know how to answer the questions as good a little PWD. The PWD who are feed up with being researched just for the sake of a good research project are not going to take part. So we will end up with misleading date if we are not careful. This point was not heard but was converted to questioning weather the consumers are honest. It is not a question of honesty but rather one of learned behavior that is so conditioned by past experiences that we need to be aware of it. Just like people going to church know how to behave. With all the unspoken does and don'ts PWD have learned how to deal with researchers and it is hard to change that. Also if we convert PWD to do their own research we must be careful to not just teach them the same old ways of doing research or this project will just create new subject mater for the same old research processes. So that the experts can tell us poor stupid PWD what is going on in our world. We have to teach the power of research to people who have not seen them selves as the experts in their own disabilities. We have to show them the functionality of it and hopefully have some concrete results from the research. PWD are learning but when we link them up with researchers who are so conditioned in the old process and approaches then they will tend to take over after all they know how it must be done. We will end up with the same old results. This project has to be about shifting the power of being an expert to PWD and not about just finding new subjects for research or new people to do the same old styles of research.

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Kathy Rust, MS OTR

ATOMS Project
Rehabilitation Research Design & Disability Center
University of Wisconsin-Milwaukee
414-229-3310

Kathy’s primary purpose in coming to St. Louis was to meet with Dr. Gray to act as liaison between the St. Louis Group and the UWM ATOMS Project for collaboration on the second AT Outcomes Symposium that St. Louis will host in the Fall of 2004. The date of this meeting was selected so that by invitation, Kathy could also attend the NIDRR Collaboration meeting.

The ATOMS Project (Assistive Technology Outcomes Measurement System) is also NIDRR funded. In its first two years of work, the ATOMS Project has developed ties with representatives from the AT service delivery systems of medical rehabilitation, vocational rehabilitation, and the school system but has not developed strong ties with the ILL AT service sector. This meeting was beneficial for the ATOMS Project to be informed of current ILL research efforts and for introducing the work of ATOMS project to the Collaboration Group. A very brief highlighting of salient findings of the ATOMS needs assessment work was provided. Participants were directed to the ATOMS website (http://www.atoms.uwm.edu/) for more detailed information.

Regarding the Fall 2004 Symposium, Dr. Gray proposed a consumer based pragmatic focus. Potential topics and presenters were identified. The ATOMS Project will “piggy-back” two of its scheduled collaborative meetings with the St. Louis Symposium. The ATOMS annual Partners Meeting will immediately precede the symposium. As part of its five year grant, the ATOMS Project is scheduled to host a Consensus Meeting with prominent AT Outcomes researchers, where their findings on AT Outcomes are presented and topic roundtables provide directions for the future. This meeting will be held immediately after the St. Louis Symposium. It is felt that this scheduling will optimize participation of AT outcomes researchers and reduce travel costs for multiple meeting efforts. The St. Louis Group will collaborate with the ATOMS Project on identifying the attendees for invitation to the Consensus meeting. Additionally, the research track of the 2004 RESNA conference (AT outcomes) was discussed to ensure that the focus of the each of the meetings is unique.

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