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Author Topic: re: paid meeting participation limited to those hiv postive?  (Read 2453 times)

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Offline poet

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re: paid meeting participation limited to those hiv postive?
« on: November 04, 2006, 08:27:31 AM »
I thought I would get your feedback on this.  We have very limited funds as an a.s.o.  One use is to pay clients/consumers who attend montly consumer advisory board meetings or the less often larger forums.  Yesterday the word got passed around to the homeless shelter that 'you could show up and get paid' for these meetings.  We have no legal way of inquiring about the hiv status of attendees.  Most people are faces familiar to case managers.  Given the above, would you say that the presence of anyone in educational meetings is important enough that even if it doesn't apply personally to them (that they are not themselves hiv positive) what they, hopefully, learn and bring back to others is worth the use of limited funds or should we try to come up with a 'gate' which keeps those hiv negative (other than staff, guest speakers, etc.) out?  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline RapidRod

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #1 on: November 04, 2006, 08:57:00 AM »
Maybe they'll have something better to talk about then booze or their next fix and maybe just ONE will learn something from it. That's putting money to good use. It may also help spread the word.

Offline Cliff

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #2 on: November 04, 2006, 09:08:19 AM »
If this is a consumer advisory board, how can someone be a consumer, of the ASO, if they are HIV negative?  I don't know how you would ensure only positive individuals are included in the meetings, but I don't think it does any good for the ASO to pay for negative folks to give advice and suggestions about HIV care and services, if they aren't receiving it.

Offline emeraldize

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #3 on: November 04, 2006, 09:19:33 AM »
Hello Poet,

It struck me that you might have a precious educational opportunity here that goes beyond your ASO's usual service breadth. Along the lines of the book series How Things Work -- with each program you deliver, could you devote a portion of time to a basic (and brief) description about how your aso is funded? If so, this could serve several purposes.

It would help clients to understand a bit about business (even though non-profit, there are similarities -- flow in/flow out); enlighten as to the work it takes to get and spend such funds; and perhaps yield an opportunity to enlist volunteers for jobs such as cleaning, painting, mailings, etc. This could possibly tie in, or bridge, to another agency whose mission is to help people find work. And, this in turn might give rise to a novel opportunity to go for grant monies, individually or jointly, that would strengthen your funding stream.

A visual, such as a placcard that shows how your ASO model works would be helpful for those who are visual rather than aural learners. Further, they could refer to it at other times or it might inspire them at a later date. And, as it usually goes, such visual information is of interest to visitors, funders, etc. It could be photographed and inserted into a document as a .jpg.

Knowing you're a poet, I'm sure your creativity can take this, if feasible, much farther than what I'm proposing.

Em

Offline poet

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #4 on: November 04, 2006, 04:56:03 PM »
Thank you for the concept, Em.  It has gotten my attention and will be on route to the a.s.o. to think about.  To Cliff, the problem is that there is no 'gate.'  From what I could figure out, an unnamed someone mentioned to the trio, two of whom live at the shelter (you need to fill out a form to collect reimbursement for attendance) that they could show up at the ________ and make $65.00.  They were there, first, for the consumer advisory board meeting.  Since we don't know the consumers, we are left to assume that anyone who shows up is one.  It was only when the staff appeared for the rest of the program that we were able to start asking, 'Does anyone know these three?' especially since they would be there, sort of nod off, leave, come back (for lunch) and then leave for good, form already filled out.  The problems include the confidentiality issue, that no one can ask them directly; the presumption of innocence, that they could, in fact, be hiv positive; behavior: what was one of them doing in the site's bathroom (and if it is anything suspect, could we lose our option to meet there?).  Since this came up after a 'consumer' had asked about reimbursement for part of a gym membership (which had been possible prior to budget cutbacks) it brought the whole thing to greater attention.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Grinch

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #5 on: November 04, 2006, 06:39:36 PM »
So you are using ASO funds to pay people to attend your meetings?  You are using ASO funds to pay for a gym membership?
I'm sorry, are your members ALL receiving assistance with their meds?  We all scream about cuts ,yet because we are worried about being PC we pay people that are not HIV positive $65.00 to go to a meeting.  Is it any wonder funds are being cut?

Offline Ann

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #6 on: November 04, 2006, 09:31:32 PM »
I have to admit I'm a bit mystified as well as to why people are being paid $65 to turn up at a meeting. I could understand reimbursing travel expenses upon provision of receipts, but just paying people to turn up? And feeding them too? Are these meeting so useless/boring that you have to bribe people to attend? I could also understand paying speakers, but a paid audience? What am I missing here?

I also don't understand why you cannot ask their hiv status. If GMHC in NYC can insist on PROOF of diagnosis before you can access their services, I don't see how this is any different.

I'm stumped.

Ann
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Offline Eldon

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #7 on: November 04, 2006, 10:50:03 PM »
I have to admit I'm a bit mystified as well as to why people are being paid $65 to turn up at a meeting. I could understand reimbursing travel expenses upon provision of receipts, but just paying people to turn up? And feeding them too? Are these meeting so useless/boring that you have to bribe people to attend? I could also understand paying speakers, but a paid audience? What am I missing here?

I also don't understand why you cannot ask their hiv status. If GMHC in NYC can insist on PROOF of diagnosis before you can access their services, I don't see how this is any different.

I'm stumped.

Ann


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Offline Oceanbeach

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #8 on: November 04, 2006, 10:50:58 PM »
Hi Win,

My day was spent at the annual HIV Planning Retreat.  Five of 19 Commissioners live with HIV/AIDS directly and the others live through it through us and their client patients.

One important issue discussed today is in this economy of diminishing resources, how can we continue to supply a continum of services.  More importantly, how do we as a Commission represent those who can not or will not participate.  Those being the dual diagnosis, the extremely poor, the homeless and people who may not have healthcare access because of legal status in this country.

With the exception of the facilitator, who has been working for us for 13 years, no one was paid.  I serve as a Commissioner, serve on at least 6 subcommittees and task forces.  I paid all costs of www.Commission-on-AIDS.org out of my disability income, which is less than $1000.00 per month.

Today it was suggested we (the Commission) form a new committee.  This new committee will handle the press, public relations, Chambers of Commerce and present for possible donations.  I have been that committee for the past year and I would like to be paid for my efforts.  Is there a window where HIV-positive people can get checks for participation in HIV related committees?  I have calculated my personal loss of income, benefits, incentives and bonuses over the past 10 years to be in excess of $1.5 million.  Someone in Sonoma County is wearing thin on volunteering.  Have the best day
Michael

Offline Queen Tokelove

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #9 on: November 04, 2006, 11:17:17 PM »
I have to admit I'm a bit mystified as well as to why people are being paid $65 to turn up at a meeting. I could understand reimbursing travel expenses upon provision of receipts, but just paying people to turn up? And feeding them too? Are these meeting so useless/boring that you have to bribe people to attend? I could also understand paying speakers, but a paid audience? What am I missing here?
I also don't understand why you cannot ask their hiv status. I'm stumped.




That makes 2 of us. Just for the sake of arguement, maybe there are some poz people there, but I also feel like you guys are paying for an audience. If you are giving out 65 bucks to show at your meetings, you more than likely have people that are there that are not poz. When I got with the place that helps me, I had to show proof that I am poz.
Otherwise to me it sounds as if you are giving out free money and who is gonna say no to that when there are no guidelines saying you have to show proof. :-\
Started Atripla/Ziagen on 9/13/07.
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2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
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Offline Grinch

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #10 on: November 04, 2006, 11:19:06 PM »


Today it was suggested we (the Commission) form a new committee.  This new committee will handle the press, public relations, Chambers of Commerce and present for possible donations.  I have been that committee for the past year and I would like to be paid for my efforts.  Is there a window where HIV-positive people can get checks for participation in HIV related committees?  I have calculated my personal loss of income, benefits, incentives and bonuses over the past 10 years to be in excess of $1.5 million.  Someone in Sonoma County is wearing thin on volunteering.  Have the best day
Michael


You want to be paid 150k a year to bash Bush?  I looked at your web site and really, with the exception of a few phone numbers for medical services that's all your site does.   You're certainly entitled to campaign against anyone you'd like, but doing so under the guise of helping those with HIV and then trying to divert some of the precious few dollars we do have to your cause, that's just wrong in my opinion

Offline Oceanbeach

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #11 on: November 05, 2006, 01:22:40 AM »
I have never actually asked anyone for funding.  I am dependent upon the services paid for by the RWCA and have used an extreme to make a point.  I have spent the last year rallying support for the Ryan White CARE Act reauthorization. 

I also served on the Funding Allocation Working Group this year over a budget of $1.5 million for the care and services of 700 people living with HIV/AIDS in Sonoma County and the estimated 1300 people who are not yet in care.  The loss of the Title I funding will be a huge setback, a public relations nightmare and the cuts in available services are emminent over the next three years.

This afternoon at the Annual HIV PLanning Retreat, two Commissioners reported on a meeting they attended at the State Department of Health, Office of AIDS.  They were hoping for some advice on the further development of Community Reconnect.  We arer the only one of nine California EMA's who have started such a program and they are watching us.

Community Reconnect was a program developed by people living with HIV, for people with HIV to help access services needed for someone disabled and trying to return to work, get training or volunteer to assist our ASO's in our economy, with limited funding.

Today at the Planning Retreat, we also made some decisions on combining committees.  Of the 700 people in care in Sonoma County only a small handful are involved in the Planning Commission or any of the subcommittees.  Staff usually outnumbers consumers of services in most meetings.  The meetings are always open to interested public.  Trying to help public employees save services can be very tiring.  They are paid by government funds and can not directly lobby the government.  Of the 60,000 + or - people who have logged on to my web site since December 1, 2005, only 9 of them had a sonoma-county.org ISP.  It is against the rules.  Letters I have left at the clinic, to get signed and sent to Congress have been destroyed because... It is against the rules.

Our annual Planning Retreat is the event which sets the tone for Planning Counsil activities.  We put in an 8 hour day.  I take Trizivir everyday at noon and get sick.  Today was no exception, I had lunch, got sick and kept that hidden from everyone in the meeting.

Thank you for logging on to the site.  The planning for the site began last year as the Persons Living With HIV Advocacy Committee (PAC) had been discussing a grass-roots, hand written letter campaign to Congress.  I hoped for 1000 letters from the site and have exceeded that goal.  During these months between 5% and 10% unique visitors have been referrals from these forums.  This is also where I come to vent.  Have the best day
Michael

www.Commission-on-AIDS.org 

 


Offline poet

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #12 on: November 05, 2006, 05:46:22 AM »
Glad to hear that the general reaction is the same as mine: what's with this being paid to attend meetings?  Please understand that I am not part of the a.s.o. organisation other than being a client.  I have used its social worker services to translate the differences from NYC, where I was able to figure things out easily, to MA.  Apparently they used to fund things such as gym memberships, massages, etc. but cutbacks ended this.  Someone did bring up the option which I would have, using the a.s.o.'s membership to see if certain gyms could offer reduced memberships, and this is in place.  I have never heard of paying someone to attend meetings.  I have participated in research studies which paid via cash/tests (Cornell, NYU,).  I should also clarify that the normal meeting is $25.00.  This was a five hour session, a general meeting, two presentations, etc. and that by holding such meetings during the day when most people have to work (I work on the weekends) this may have come out of a lack of attendance.  Your comments certainly give me the backup to start asking questions about this.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Cliff

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #13 on: November 05, 2006, 05:56:04 AM »
In your first post, you used the word we, which made me think you were a part of this organization.

I personally don't have an issue with paid gym memberships, as many people with HIV need them to help put on muscle mass and unfortunately are unable to afford gym memberships at local private gyms.  Paying for meetings seems odd, but without much information as to why this was done and what is exactly being accomplished at these meetings, I can't say for certain whether I have an issue with it.  Sometimes it is necessary to pay for people to attend meetings (well focus groups), in order to obtain information from people who otherwise wouldn't do it for free.

Offline emeraldize

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #14 on: November 05, 2006, 08:19:27 AM »
Hello Poet,

I, too, thought you were an E.D. or staffer as indicated by...I thought I would get your feedback on this.  We have very limited funds as an a.s.o. But, now that I understand you are not, I will add that paying someone to attend a program did not cause my eyebrows to rise because I've known of other agencies, not HIV but health-related, to pay a stipend or per-session-attended amount as an inducement to learn. This is not a new concept particularly getting single women with children out to valuable programs. It's been used broadly, but with structure, agreements and successful outcomes.

Anyway, the $65 amount seems quite high, but I don't know anything of your funding sources, the agency's directives, regional differences, etc. I had/have no reason to think that this ASO is not functioning as it should. Rules seem loose, or non-existent, if the constituents served are to be of a positive status and no proof of status is required.

Ironically, I would encourage you to take that concept I outlined and ask the ASO E.D., et al, as a consumer, to be educated about their funding streams, mission, goals, objectives, etc. They'll either ignore the request or be delighted in your interest.

You seem like the type of person who could get a response. Look at how well you've done here!  :)

Em

Offline poet

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #15 on: November 05, 2006, 05:11:18 PM »
Sorry about the earlier confusion, Em and Cliff.  As a consumer/client of the agency, as with GMHC or PWAC in NYC, I am part of the 'we' in that if I don't speak up, it's 'us' versus 'them' and I am not one to sit back and let things happen without inserting myself.  (How about that for a phrase?)  The problem, in part, is that the off limit/consumers/clients only meeting occurs prior to the rest of the meetings and that's the confidentiality problem: we are not supposed to know more than we offer to each other about each other.  The answer, as pointed out, would be to follow GMHC and have a pass supplied by administration which would indicate, discreetly, that someone's hiv status has been vouched for by administration.  Hopefully the word would get out to the shelter that it isn't as simple as showing up.  You would need to have that pass.  And I will investigate without being a pain-in-the-(insert) where the stipend concept came from, whether is became necessary to ensure that anyone showed up (last small meeting, attendance total 5).  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline emeraldize

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Re: re: paid meeting participation limited to those hiv postive?
« Reply #16 on: November 05, 2006, 08:51:14 PM »
Thanks for the clarification, Poet.

 


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