Status quo vs. considering the possibilities

You see who your friends are when you get involved in advocating for change and challenging the status quo. “Friends” suddenly turn and walk the other way when they see you, fail to return emails with a simple invitation to go to lunch or coffee and feel it appropriate to attack you on social networking sites (facebook, myspace, etc.) While this is disappointing, it does not diminish our resolve to continue fighting for needed change in southern Wisconsin

During the past two months this website has brought to light issues that have not been discussed openly in the southern Wisconsin AIDS/HIV community for years. We have had over 7500 unique visitors to the site and have received many emails and phone calls encouraging us to continue on our quest to bring these issues to light.

We have seen a thoughtful article written by Bill Leuders appear in Isthmus, witnessed the formation of ACT UP Wisconsin and for the first time since we began raising these issues witnessed the number two person in the Department of Health Services (Dr. Seth Foldy) publicly admit that AIDS Network’s continued funding is in jeopardy.

We have called attention to the disparity of services provided to those living with HIV/AIDS in the southern region of Wisconsin when compared to many other areas in the state. We have highlighted the differences in service received in Madison versus Green Bay; an area almost identical to the southern region in population and client base. We have questioned why there has been no public disclosure of income and expenses on the organizations annual IRS form 990 for the ACT Rides; a question still unanswered. And we have asked, repeatedly, for the leadership of AIDS Network to tell us where we are wrong in the facts we have presented.

For our efforts we have been called “embittered dissidents” and “warriors in a turf battle” between AIDS Network and ARCW. Karen Dotson has repeatedly blamed the issues on “computer problems”. Early in our efforts staffers and former board said our efforts were “toxic” and “blather”.

We have pointed out that AIDS Network spends 38 percent of Ryan White dollars on core medical services versus ARCW’s 76 percent.

We have called out the Department of Health Service’s for their ineffective job of monitoring AIDS Network over the past several years and for turning a blind eye to innaccurate reports, undocumented doctor visits and reassessment rates that were in a free fall.

We have initiated a dialog regarding “models of service” delivery. We have shared information about other ASO’s around the country that have failed to heed the warning signs. We are now highlighting success stories; agencies that have adapted to the changing nature of the epidemic and the needs of the HIV/AIDS communities they serve. We have attracted the attention of highly respected observers of Madison and Wisconsin politics and received national media attention.

We have been heartened by the communications we have received from those living with HIV/AIDS and many others who support us and we have been stunned by the current and former staffers of AIDS Network and those that have an emotional attachment to the AIDS Network of the past who feel it appropriate to personally attack members of the HIV/AIDS community and those who support our efforts.

For example:

A founding member of ACT UP Wisconsin received a letter from an ACT Ride volunteer and partner of an AIDS Network staffer urging her to drop her affiliation with ACT UP. He stated that “the approach Greg Milward is taking with his website and this campaign is appalling to an outsider looking in. There have been specific attacks on individual members of the AIDS Network board and staff. I find that a disturbing way to approach a problem.”

An AIDS Network Case Manager wrote: “Who am I to “force” a person to go to the doctor? Am I case manager or a drill instructor?”

A current prevention staff person at AIDS Network says: “SHAME on those whose only action in this fight is holding a sign, getting media attention and profiting on that attention. …I’m all about protesting what you think is right. But you wouldn’t protest a homeless shelter because they can’t do everything for the homeless. You wouldn’t protest a free health clinic because they weren’t doing expensive procedures. Why protest case managers who helped your ass when you needed”

Another AIDS Network prevention staffer “thinks it’s ironic when people protest because they want something to be more like Walmart.”

A case manager and current part time employee “finds it ironic when activism is sparked by blatant lies and mistruths. How unfortunate.“

From the Vice President of AIDS Network we hear:

“I like how some folks take factual infomation an (sic) contort it to their own cause. I have volunteered for the agency many years and I have seen first hand all the hard work and dedcation the employees and volunteers put in to help not only clients, but the families of clients. I say this as a volunteer…Nothing is perfect, but NOT having an agency that cares deeply for the medical, legal and basic care of its clients is something I don’t want to imagine. It saddens me to see folks that use to rally at the side of the agency now, without hesitation attack. Sad.”

From an AIDS Network case manager: “In speaking with a client today, she wanted to know and I quote ” who are these people talking on my behalf ?” ” I have everything that I need, and I Love having the choice of being able to pick the service provider that best meets my needs”.

From a former AIDS Network case manager: “it is being assumed that this small group speaks for the majority of AN clients. my experience working in the case management dept. says otherwise as well”

Lastly, Karen Dotson, executive director of AIDS Network who “pegs the ACT UP chapter as a handful of embittered dissidents.” and marginalizes our concerns as being the result of computer problems.

Almost without exception, the negative statements that have been flung our way have come from current and former staffers of AIDS Network and a smattering of others who have come to see AIDS Network as a social outlet rather than an AIDS service organization. This does not bode well for the future of this agency.

As for us, we will continue to take the high road.

In upcoming posts we will address several issues that were raised in this post:

What is the role of the case manager?
Is it appropriate for the staff from a federally and state funded agency to be publicly bashing the constituency they are meant to serve?
The “silence” of the officers of AIDS Network: Who are they and why are they missing in action?
The direct service model and the AIDS Network espoused “Walmart” myth.
Has AIDS Network become a social organization and lost sight of the “service” component?
The myth of client feedback: The ineffectiveness of focus groups and self-conducted satisfaction surveys as vehicles for determining programs and service levels.
Is the Kansas City model something the ACT Ride should consider?

Finally, to all who would bash us and question our motives, we ask a simple question:

Where were you on June 5, 1981? Have you been through the battles of the AIDS epidemic? Can you understand that our passion for these issues is driven in part by having witnessed, early in the epidemic, the failures of organizations and institutions whose stated intent was to serve the AIDS community?
Doesn’t your social work training teach you to have empathy for all opinions? With your vitriolic statements on a public social networking site, how can clients who may share our opinion continue to work with you in an environment of mutual respect?
Are you living with HIV/AIDS? Do you wake up each day wondering if your drug regimen is going to continue to work? Or wonder what new side effects you will experience?
Have you been to the offices of another ASO (aka ARCW); taken a tour and seen how ARCW operates?
Are your statements based in fact or emotion?

We will continue our mission of bringing issues to light and holding those in positions of power to task. As we traverse this path, we will remind ourselves of what we said early in this endeavor: We will continue to take the high road. We can only hope that those who have chosen the path of attacking us will reconsider their approach and stick to the issues.

Ray Durr & Greg Milward