Online ASO

[JR Gabbard]

When I was growing up, there was a concrete company in the area whose logo was "Find a hole, and fill it" which it painted onto the revolving barrels on its cement trucks.  I liked the message; it moved me; it felt somehow complete.  And it stuck with me.

A few years later, as a young man, the message had taken on an entirely new meaning  , one that I took to with, well--gusto!!  And that's stuck with me too. 

So, now I'm kicking about for something new to do, and I've turned to my old friend--the hole.  And in kicking around on the web, I think I've found me a hole, and I'm gonna fill it!

The web is vastly underutilized in terms of providing direct social services to people with HIV/AIDS, and I believe these services could be provided very easily and efficiently through a web-based ASO.  The services I have in mind are:  support groups employing trusted support techniques; benefits counseling and support around Social Security claims; workshops on various topics related to HIV/AIDS, such as PNI, mind-body harmony, and other stuff; and training on how to provide benefits counseling and SSA representation.

The fundamental premises are:

• that we are each the teacher of our own experience, and the student of the experiences of each other
• that every contact between two people with HIV has the potential to be transformative for each of them
• that we have the collective knowledge to survive HIV
• that it is possible not just to survive HIV infection, but to thrive with HIV infection
• that together, we are stronger than a virus

Rhetorical question #1:  Why this?  As funding for ASOs has dried up, money has been focused away from these core services, mainly because they are not considered "core services."  At the  same time, as people are living longer, these "survivor" services are what that they need more often. 

Rhetorical question #2:  Why on the web?  The web is becoming ubiquitous.  If surviving HIV is a function of collective wisdom, then wider availability will yield more wisdom; in my theory more is better here!

Rhetorical question #3: OK hot shot, how're you gonna develop this idea?  Yes, it is an audacious proposal, but it is possibly a very good one too.  The most important realization I've made is that this is a community project, and my ability to engage the community in the effort will decide whether it succeeds or fails.  A couple of the ideas I'm pursuing:

Support Groups:  The support groups can be anything, really.  Crochet club, knitting circle, book club, jams and jellies circle.  The point is more intimate interaction with other HIV+ people.  But I will also develop a couple "survive and thrive" programs for people who want to work on HIV survival issues.  These will be small groups, and one of the rules will be that whatever is said in the group stays in the group, and we will use the principles of trusted support. 

I'm in a real world workshop that covers a number of health co-factors that affect HIV disease, and a large part of the program is trusted support.  I'm going to recruit a group of them to help me do a "shakedown cruise" for the online format.  It will present some challenges; nobody else is doing this type of online support group so there is nothing equivalent to model.

Benefits counseling/SSA:  SSA allows you to manage your SSDI application online, so I'm going to put up a tutorial on how to file your own claim, with emphasis on how to get it approved on the first go.  HIV is the easiest claim to prove if you present the claim properly!  So part of the tutorial service will be claim-coaching--someone to help with the paperwork.

There will always be borderline cases that are harder to prove up for some reason, and for those cases I can train folks up to be Appointed Reps, who could earn money if the claim is approved.  In exchange for the training, you would have to volunteer as a benefits counselor for a set period.

Where would the lovely workers come from? you ask.  From colleges and universities, among other places, either for the experience or (if approved) for work-study, I reply.

Where would the lovely clients come from? you ask.  From web advertising, and outreach, and networking, and word-of-mouth recommendations, I reply whistfully.

And what about the lovely money? you ask.  Enough with the lovely questions already, I reply.  Everything I've described so far will be free of charge to clients, except if the ASO becomes the client's SSA rep, in which case SSA fees will apply which are back-end, so nothing is required up front to receive the services.  The lion's share of any fee will go to the one who actually does the work (not me, if things go as planned) and the ASO will keep an admin fee.

For my part, I will have a bookstore on the site (Amazon re-direct to start) and I'm looking for other sundries to peddle, plus I'm planning a small e-publishing house (I mean very small) and a small design shop focusing on law office website design (a niche).

Since I'm envisioning a community project, I'm writing about it here and opening the idea to public comment.  I'm also writing here to create a chronicle of the project.  This is early March 2008.  I hope to have the project fully live by January 2009, but bits and parts will go live sooner.  I'll announce those here as they happen.

Cheers,   JR

[minismom]

Very ambitous under-taking to say the least.  It sounds like you've put a lot of thought into the various aspects.  You mentioned several times that you will "train" people.  What experience (educational / on the job) do you have that qualifies you to train others?  And, always the question: how will this extend to incorporate jr. pozzies and their families?  Are you planning on incorporating ID docs or other HIV medical professionals that will be able to answer specific questions or to do an online webcast?  What about an HIV lending library or grants that are avaliable for pozzies.  I'm sure they're out there somewhere. 

Just some thoughts that came to mind as I read you post.  You are looking at a lot of work - but I encourage you to persue it.  Keep us posted.

Mum

[JR Gabbard]

Very ambitous under-taking to say the least.  It sounds like you've put a lot of thought into the various aspects.  You mentioned several times that you will "train" people.  What experience (educational / on the job) do you have that qualifies you to train others?  And, always the question: how will this extend to incorporate jr. pozzies and their families?  Are you planning on incorporating ID docs or other HIV medical professionals that will be able to answer specific questions or to do an online webcast?  What about an HIV lending library or grants that are avaliable for pozzies.  I'm sure they're out there somewhere. 

Just some thoughts that came to mind as I read you post.  You are looking at a lot of work - but I encourage you to persue it.  Keep us posted.

Mum

Hi Mum,

Since you asked, and knowing how much I hate to bang my own drum (too loudly), I am qualified to "train" people in these things by virtue of education (JD) and experience (5 years experience in representing HIV+ SSA claimants,) plus some post-doctoral training I undertook at NITA, which earned me an Advocate designation (it was a surprisingly good year for me last year).

There are two aspects to treating HIV--your MD gives you medication to control the infection.  You know it is working when your viral load goes down.  Whether your CD4s also rebound is a side question.  Your source for information on treatments that fight the virus is your physician, and sites like poz.com.  My ASO will be aimed at giving competent information on things you can do to strengthen your immune system, the other half of the equation.  It is an area that traditional medicine is only starting to recognize, so by and large I leave them out of the discussion.

I assume that anyone coming to the new ASO already has resolved all of their issues surrounding the medical aspects of treating the disease, and that if it is time for you to be taking meds, that you are taking them, and correctly.   A support group can help you work through issues surrounding how hard it is to keep up with the schedule, or what a pain diarrhea is, but if you are questioning whether meds are useful, you need real world support to get through that.

The idea here is really quite non-technical.  If you put HIV+ people together in small groups with the proviso that you can say anything, and nothing leaves the group, wonderful, magical, healing things will happen, with or without an agenda.

There is science to back up this stuff, though.  So I guess what qualifies me to evaluate and present these studies is the same thing that qualifies me to evaluate and present evidence to juries in a court of law.  **End drum-beating**

Mum, I know you didn't mean anything.  But I've been really down on myself lately, so I snatched this opportunity to remind myself I've got stuff to be proud of (even if I don't always see it.)  Forgive the snippiness.  JR

[minismom]

I was just asking questions.  As a person who lives in a state with no ASO's or support groups or intelligent HIV-savvy people, I had to muddle my way through some pretty horrific ordeals.  We're just now, since coming here, understanding the full scope of Mini's issues that revolve around HIV but were not resolved by her HIV meds.  We had to do the whole SSI thing alone and it took over a year - 15mths. 

I truly didn't mean anything by it, just trying to add my 2-cents about what would be helpful to me and possibly to other people.  I apologize if I sounded condescending, that wasnt' my intent at all. 

mum

[Ann]

JR,

I think you just described THIS website.

Just sayin!

Ann

[Iggy]

Hey JR,

When you described this initiative in the other thread, I had thought it more as a resource for bricks and mortar ASO's which I think may be a good idea and something welcomed by those with little budgets for research or networking purposes.  That is something definitely worth exploring.  My suggestion in this scenario is the first step should begin by your own outreach to the ASO's and see what they need and go from there.

I'm not so certain about items like benefits counseling or anything that is meant for the one-on-one client services arena for two main reasons.  The first is that you become in some ways a competitor to the ASO's themselves, and second there are certain things (in my belief) that are better dealt with and understood in face to face settings.

As I said on the other thread, I hope I am not misunderstanding the initiative that you propose, but I think it is aiming for a level that is too far ahead of what is directly needed by both ASO's and the client base.

I also think Ann makes a point that a lot of things you do mention seem to be related to offerings that already exist here on AIDSmeds (such as info on treatments, online support groups, test info) and that instead of reinventing the wheel that perhaps you explore ways that your idea might supplement what is already out there.  Going that route you might also want to discuss such things with AIDSmeds as perhaps they can utilize your ideas in an existing and successful (and known) platform.

Good luck...and frankly thank you for keeping the wheels turning as far as ideas.

[JR Gabbard]

JR,

I think you just described THIS website.

Just sayin!

Ann

Yes and no.

Haven't seen the kind of support groups I'm thinking of--namely small (no more than 12 members) confidential, and organized on the principle of trusted support.  Essentially, this means you can say anything in the group without fear of being judged, and without fear that it will be repeated.  Not really possible on the open web.

I think there is value in organizing groups this way.  Small insular groups encourage more candor between the members, and that is what (IMHO) a good support group should be.  This kind of interaction has been shown to have a positive impact on the immune system.  There is science behind this, but you'll have to wait for a fuller explication.

And there are studies that show that open web support groups are less effective.  The reasoning is that people are aware when they post on a site like this one that there is no way to know who will read their words, so they self-censor.  Perhaps not often, or well, enough for your ease  , but still, self-censorship is great for order, not so great for the one who needs to express him/herself.

Poz.com is great at getting the best info out on almost every HIV related issue, and the forums are excellent for answering all the pertinent questions regarding HIV.  But the forums have their limitations, and that is the hole I'm looking to fill.  (see how I wove in that theme?)

So, I see my idea as complementary, not competitive.  Groups do not even need to be organized around a "health" topic, only on the principle of trusted support, because that is the important aspect of it all.

Oh, and the Social Security bit.  That's complementary, too.

I'm jus' sayin'   

JR