BOBSPAGE.ORG
(See page being developed)
White paper
(Version 4, May 31, 2011)
Created by Bill Ogilvie, Austin, TX

Contents:

OVERVIEW:

The idea for BOBSPAGE.ORG originated with an actual website my family created to improve the support for my older brother, Bob. Bob was born aphasic and is now in his 50s. While he is largely independent and self sufficient, he has always had and will continue to have some basic support needs. Over the past few years his support needs seemed to increase, with most of the burden falling on those who live in closest proximity to him, specifically my sister and her family, as well as my mother and step-father. The demands for support were reaching a point of being overbearing and unsustainable.

A good example of this occured in early 2009 when Bob received a medical bill that he did not understand. As he presented this bill to family members, people sent emails and made phone calls to try and get some sort of explanation. These activities morphed into accusations about how family members were not living up to their responsibilities. And, after all this, the bill still could not be explained.

There was never any question that everyone had the best intentions about supporting Bob. But it appeared that everyone's efforts were not improving the situation in a meaningful way. Instead, they appeared to generate unnecessary stress. And there did not seem to be any light at the end of the tunnel.

In late 2009, to help reduce the support effort, my sister proposed a "family meeting", which I volunteered to help coordinate. In preparing for the meeting, we realized that the real problem was not Bob's support needs per se, but that there was not a good support structure for Bob. This lack of structure caused even the smallest of issues to turn into crisis.

Compounding the problem was a lack of trust between family members arising from past family dynamics. This lack of trust undermined the ability to have a healthy conversation about Bob's support needs, and brought into question whether family members would be even willing to attend the family meeting. To help overcome this, as part of the meeting prep, my sister and I developed a website that included a problem statement about the support issues, the opportunities created by addressing these issues, and a breakdown of areas of support and proposed roles and responsibilities. The intent of this site was to facilitate a healthy dialog ahead of time by having people review and respond to the content of the site, and ensure it was updated using everyone's input. This both helped build confidence and trust about the intent of the meeting and ensured that everyone was fully briefed ahead of time. Then, about two weeks before the meeting, we posted a clear agenda that everyone could review and approve.

To everyone's delight, the meeting was a success, and greatly improved how the family was able to support Bob. We largely achieved the goal of being able to provide much better support with much less effort, and make our relationships with Bob much more enjoyable.

After the meeting we created a web page which embedded this support structure and helped everyone manage Bob's support needs in a sustainable way. This web page is still in use today.

By no means were the meeting and websites a panacea for Bob's support challenges. However, we were able to greatly reduce the number of crisis and issues that arose by documenting Bob's various support needs and ensuring there were as few unknowns as possible. As such, the time and angst previously spent responding to crisis and issues all but disappeared, which greatly reduced stresses and made the time spent with Bob that much more enjoyable.

Why use web pages? We found that web pages were the most effective tool for maintaining information because they gave everyone equal access to the same information, allowed the information to be effectively organized, reduced the opportunity for hearsay, and eliminated the need for everyone to archive and manage the same information. As designed, the web pages were easy to maintian and update, and could be modified to account for changing circumstances and needs. Finally, by categorizing Bob's support needs, the web pages demonstrated just how complex one person's life can be and all the areas where support may be required. This high level view was not evident when the family was responding to one crisis after another. As such, the web pages allowed us to develop a way to provide a support structure in all areas of Bob's life. While emails, phone calls, and other forms of communication were and remain important, in as much as they were largely tools used to respond to crisis, relying solely on these forms of communication was exacerbating the problem we were trying to solve, and not leading to a solution.

Since 2009 I have shown the web pages to others. I was surprised by the number of times people said that they wish they had access to similar pages when dealing with a particular situation. Just as an example, in mid May, 2011, a friend mentioned that such a page really would have helped her and her siblings improve the the support for her terminally ill mother.

I've been wracking my brains to understand the difference between the pages my family created and the social network pages, blogs, and other pages readily available. I realized the difference is that our efforts were very similar to a project management effort within a business or organization. Our web pages were designed accordingly, and are significantly different than the status updates or profile tools that one would see in a social network page. In addition, the structure of the information does not lend itself to a blog, which is more like a real time newsletter.

As such, it appears there could be a need to take the tool my family developed and turn it into a more universal tool that others can use when faced with a situation similar to ours.
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What is the goal of BOBSPAGE.ORG?

To provide an easy to use, web based tool to help small groups of people improve communication, build consensus, and make decisions when dealing with a stressful or demanding situation.
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Perceived problem addressed by BOBSPAGE.ORG

The efforts of small groups to address a difficult situation can be hampered or undermined by poor communication, inability to build a consensus, and inability to make sound decisions. In many cases, the problem is not lack of intent but lack of means.
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Solutions offered by BOBSPAGE.ORG

Help develop a consensus about

  1. the underlying problem(s) being faced.
  2. the proposed solution.
  3. the opportunities that can be realized.
Help facilitate a discussion about
  1. key areas of support.
  2. actions that need to be taken.
  3. consensus that these actions are realistic.
  4. ownership of actions, and support of that ownership by the rest of the group.
Help improve long term communication:
  1. Ensure everyone has easy access to the same information.
  2. Help develop trust about the information.
Improve engagement:
  1. Create an environment where the focus is on addressing issues at hand (vs hidden agendas).
  2. Provide an easy way for everyone to participate.
  3. Help dissuade people from using back channels for information that should be shared by the entire group.

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Perceived audience

Small groups struggling with a critical support task or difficult decision making effort. Members of this group have an investment in addressing the issue/decisions at hand.
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What BOBSPAGE.ORG should NOT be

BOBSPAGE.ORG should NOT be:

  1. A substitute for professional therapy or services.
  2. A complete replacement of other forms of communication.
  3. A tool available only to one member of a group.
  4. A means for one person to control a discussion or decision making process.

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