Re: My Experience With ASO'S (AIDS Service Organization)

[Guest guest]

Let me say up front that although I have volunteered for nearly every agency in my region that has anything to do with HIV/AIDS, I am not, nor have I ever been on any of their payrolls. I have never worked for an ASO.

I'm very sorry to hear the news when someone has such negative experiences. It is true that they vary from person to person. Mine have been the polar opposite of those reported in this post.

Tennessee has a range of small and large AIDS Service Organizations (ASOs). They provide case management (which includes many things but importantly help for folks in accessing their insurance, Medicare, or Medicaid effectively), emergency financial assistance, nutritional support via meals or food bags and/or vouchers depending on the agency and need, practical support (help at home with things like house cleaning, or just checking in on those who have not family or supportive friends, etc.) transportation support, alcohol and drug treatment, counseling, housing assistance, referrals for help provided by non-HIV-specific agencies, and education to help PLWHA understand the disease and adhere to treatment. In addition they administer the insurance assistance and dental programs. Importantly, they also do much of the HIV prevention education and a significant amount of testing in the state.

It is useful to understand both the history of the HIV system of care in the U.S. and how the funding streams work if one truly wants to have insight regarding the system.

In the beginning, ASO's were all we had. There was no designated federal funding, and although we sought out doctors, all they could do was treat the numerous opportunistic infections and help us to die. They helped many of us get through those tough years. When White funding and other funding streams came along, they were the ones who made sure folks could navigate systems to access those funds.

Any White funded agency is required to have a documented grievance policy that is a stepwise procedure that provides for having your complaint heard at the agency and if necessary eventually in appeals all the way up to the state health department or local government grantee (in large cities).

Running an ASO is extremely difficult. Doing it well is even harder. There are never enough funds. Administering limited resources fairly is challenging (do we give a few folks a lot or a lot of folks a little?) With some programs the agency must try to foresee the future while need fluctuates wildly due to unforeseeable outside factors. (If they are too conservative with funding, they may have to return unspent funds having negative consequences for future grants; if they are too liberal, they may run out before the next funding cycle comes along.)

The largest chunk of White funds go for core services - medical care, medications, and insurance assistance. These programs are most often housed in health departments, sometimes using contractors.

The balance, which goes for support services and to help get people into care and insure their success - the kinds of "wrap-around" services I listed above - are typically delivered by ASOs or non-profit quasi-governmental agencies functioning as ASOs. It should be noted that one of the regulations connected to White funding is that consumer input must occur with regard to how these funds are allocated. You can get involved with the state advisory board, local consortia, or planning council and you can make a difference.

All federal and private grant funding comes with restrictions as well as regulatory and reporting requirements. Agencies cannot spend most dollars in whatever way they wish. They must follow the guidelines that come with each grant. White grants are governed by standards of care for each function, strict limits on overhead expenditures, and quality review processes including financial audits. The grants are obtained through a periodic application process that can be very stringent and that is usually competitive.

White is intended to be the payer of last resort and it is intended for low income PLWHA. Some agencies are better at raising their own funds and obtaining grants with fewer restrictions; that allows them to be more flexible with the assistance they offer. They still, however, have to be sure to deliver services in a way that is fair to all patients, that demonstrates good governance and due diligence, and that avoids favoritism or discrimination of any kind. They must also provide extensive reporting on service provision and this data along with other audit reports can affect their funding.

Also, states must conduct periodic studies including needs assessments that gather data by survey, focus groups, and other means to identify gaps in services and help set priorities. Consumer involvement can help make sure the questions asked are relevant and that they probe areas of concern.

Please don't think I'm naive. I know that despite all of these protections that some bad things happen and that some agencies perform poorly. On the other hand, the vast majority of agencies with which I'm familiar deliver a huge amount of helpful services in the face of many barriers and hardships. I hear a lot of complaints and resentments, some of which are justified but many of which are based on unrealistic expectations, a misunderstanding of the systems, and in a few cases an inflated sense of entitlement. I know a lot more success stories, where PLWHA wellness and sometimes their very survival have depended on ASO services.

There is a difference between what we'd all agree would be the theoretical ideal package of services and what can be responsibly done within regulatory and funding restrictions. It makes no sense to blame ASOs for the difference. That energy is better used by becoming involved in the processes that set priorities and control funding regionally and advocating for maintaining / increasing funding at the regional, state, and national levels.

Knowledge is power. The most effective advocates I know have thoroughly learned the systems involved. This isn't easy. I've been involved for years and I'm still learning - moreover it took several years of intense involvement before I had a clue. But consumers can have a voice and can make a difference. It is hard work, and we sometimes get burnt out, but it's rewarding too.

Further, if we don't fight for continued funding these critical support services they could very well go away forcing ASOs to slash services or close their doors.

Sincerely,

mark

Mark HubbardNashville Tennessee

>> I realize that each person may have his own experience with an AIDS Service Organization. From my personal experiences, I have found that most of them, if not all, that I have ever had to deal with are almost useless. It seems to me that each caseworker spent so much time explaining to me over and over again what they could not do. I even told my partner that if they spent a fraction of the time doing something instead of taking so much time telling us what they can't do, they might actually get something done. Second of all, they take every day, hour, sometimes down to the minute off that they can. They will take every day off and close any chance they get. Alianza of New Mexico in Roswell was the absolute worse for this!!!! Project Response in Fort Pierce, Florida simply could have cared less about their clients. I feel that allowing an ASO to facilitate a White Grant or any HOPWA funds is ludicrous. Alianza even had their HOPWA grant taken away and managed by Southwest Cares out of Santa Fe. > > The State of Wyoming is a whole different creation with HIV care in itself. They don't even have an ASO in the entire state. Wyoming uses the health department of each county. Let me clarify to be fair first. There is one very small ASO in Laramie, WY run through the Univeristy of Wyoming branch and a woman by the name of Charlotte is there. She is very nice and will do what she can with what she has to work with in Wyoming. We lived in Cody, WY. Let me tell you back their HIV care in three letters-LOL!!!!!! That's it. I saw a physician at the Billings Clinic in Cody who was an internal medicine doctor and his nurse said to me that YES, he can treat HIV. The doctor proudly told me, "he was treating me for hypertension, not the other." I never even discussed anything else with this person. In Wyoming, you might find an ID doctor through the yellow pages or calling one of the local hospitals. > > New York State seems to do their ADAP management a little different. There really isn't an ASO around that I know of, at least. The signing up for the program can be initiated through any one of the care clinics, and the necessary paperwork is sent through Albany. NO ASO involved, and it is so much easier. The state then sends each client a list covering the entire state of where they can receive medical, dental, and vision care. > > So many of these ASO's operate in such a negative way and take their client down with them. I strongly believe that each one of them should have their grant pulled and the care should all be facilitated through the state.> > http://timehasshownme.com>

[Guest guest]

Well said Mark! There is so much involved with having to distribute these funds that seem

to keep disappearing by the minute. Try being in California!!! Fortunately I am not in need

of services here but when I first moved back 5 years ago from Arizona they were very

helpful in in navigating my search for a HIV Dr. I live in a very rural area so there is not a

lot in the way of services other than assistance with rental assistance (which would generally

fall under HOPWA), food and gas cards. All of these people I work with are under a lot of

stress because funds keep drying up here as well as any other state. Now I am on SSDI

and Medicare so I feel really blessed in that area but for the vast majority of my life with

HIV I worked full-time and lived in major metropolitan areas. For me personally, if I would

not have had to move back to my hometown area I would have stayed in Phoenix or another

large city who had services. I have nothing but the highest regard for those who are on

the forefront battling the budget issues daily yet trying desperately to serve the needs

of their clients.

Mark is right, it's time to work with these oranizations...volunteer your time and see what

the real issues are and what they are dealing with. Be a part of the solution :-)

Thank you Mark for all your hard work. I have several poz gal pals in Nashville who really

appreciate all the assistance and care they get!

All the best to all of us!

Nena

[Guest guest]

You have no idea of the amount of work involved with funded programs...

 

Take ADAP Florida as an example, people are on then off, then on Paps, then off, then on ADAP waiting lists, then off...plus rules and funding constantly change. 

 

Or take White Florida: they never finalized exact funding dollars until about 8 months into the grant year.  So, Agencies were in the position of  maybe not being re-imbursed for programs that might have been cut 8 months into the grant year, after Agency money was spent.  As it turned out,   this did not happen, but some Agencies put the brakes on some categories, awaiting clarification of exact grant dollars.

 

I often wonder why people do not Volunteer and help resolve issues.  Most Agencies are trying to help you but are overwhelmed, understaffed and under funded.  IT is only going to get worse with budget cuts in our future.  IF programs are not well attended, they have and will be cut to save operating funds, case workers/ helpers are layed off.  So, please be part of the solution: Volunteer to help.

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W. JAMES PERIGNYCHIEF EXECUTIVE OFFICERRED HISPANA FLORIDA

HTTP://REDHISPANAFL.ORGDIRECT: 954-817-1787

 

 

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