I was diagnosed with HIV in 1992 in a rural city in Louisiana. At that time there were only a few drugs to treat HIV. Back then when asked how long someone with HIV had to live they were often told, as I was, that maybe 2 or 3 years. I was diagnosed with AIDS in 1995 while living in New Orleans Louisiana. Luckily then there was an organization called NO/AIDS Task Force which helped me with getting applying for and getting my Social Security Disability. I was one of the lucky ones that only had a wait of about 6 months before I got my approval for Social Security Disability.
At that time I really did not know what was going to happen to me or how long I would live. I had always wanted to go back to college and get a degree and possibly go to work part time since with disability you are limited to what you can and are allowed to do. I just did not want to just not do anything with my life but wait to die. With disability checks being at such a low amount it would be hard to make ends meet after paying rent and bills. I thought about going back to school. Now that I was on Social Security Disability and received a very small income from it I would qualify for grants to cover most if not all of my education. At the time I had a very close friend who I watched die from AIDS and that prompted me to think about going into a medical field such as nursing.
Then another change in my life happened when a close friend of mine decided to move to Key West, Florida. I decided to move there as well because of my fondness and ties to Key West and what I had heard about HIV/AIDS care in Key West. I was born in Key West in 1966 but grew up in Southeast Louisiana. My mom is from Key West and my father from Louisiana. My father was stationed there in the marine’s and he met my mother there and married and they had me and then they moved to Louisiana just after I was 1 year old. My family and I traveled to Key West many times while growing up so it felt like home to me and it felt right to make this big move.
I got settled in Key West in February of 1997. And the following fall I decided to go to school at Florida Keys Community College to fulfill my dream to be the first person in my family to go to college and get a degree. I also decided to try and work part time as well. I accomplished those things while living in Key West.
At the time the AIDS Service Organization in Key West was very helpful and they had employees who seemed to have the clients best interest at heart. I ended up getting into a housing program that helped a great deal and eventually got on Section 8 which helped a great deal.
Around 1999 I became involved with the group that was called the Monroe County AIDS Consortia (which oversaw how funds were distributed and gave direction to the AIDS Service Organization) because of a friend who was a strong advocate for clients and was the Client Liason for the ASO. I got really involved with committees and saw the other side of the aspect of care for people living with HIV/AIDS. The ASO had some changes in its personel and often heads butted between members of the consortia and the ASO over funding issues and how money was being used. At one point there was the use of fear and intimidation to keep clients from being involved in the decision making process. That is when I became an advocate for change for clients.
The ASO at one time dominated the Consortia meetings and the decision went in their favor almost always with no questions asked. When clients started to get involved and asked questions some in the ASO did not like it and began to in my view mistreat the clients they were employed to help. The ASO was on its third Executive Director since I became a client in 1997 and the 3rd Executive Director was a smooth talker and when something did not go his way he huffed and puffed until others gave in. When a client raised issues about services or went to others about the issue, the client would be labeled as problem client. The client’s Case Managers were not able help as much as they would have liked to or they hired Case Managers who did not know what they were doing.
At one point there was a group of us that wanted to form a Client Committee. That idea was shot down by the ASO’s Board of Directors because there was that fear in them of client’s getting to much power and say in how things were being done. When we finally got our Client Committee the Executive Director basically wanted to have control over the Committee and proceeded to tell clients what they could and could not talk about or bring up at the meetings, which reminds me of how the Communist regimes work. The Executive Director of the ASO would talk nice to someone’s face but he acted just as a crooked politician and said what someone wanted to hear and if a client raised a question about an action taken the client was labeled a disgruntled client trying to make trouble for the ASO.
The ASO has a Director of Client Services who also rules the way the Executive Director does. She has her pet clients that get most everything they ask for and those that dare to speak out get shunned or intimidated.
I lived on a property that is managed by this ASO and not long after Hurricane Wilma flooded the island of Key West there was a decision to raise the units on the property that were at the flood plain level. Clients were told to expect this to happen within a year or so back in 2006. It was in 2008 that clients that lived in those units were told that it would be happening soon and that the ASO would help secure housing for them until the work was complete and would cover the cost of deposits and moving expenses for the client.
Clients attended meetings about what was going to happen and there were delays with it happening until one day right in the middle of tourist season when rental housing units are scarce. Clients were told that the ASO and the Case Managers would help find suitable housing for the displaced clients. Some clients were given choices of housing units available that were deemed needing to be torn down and replaced by the local Housing Authority in a drug ridden neighborhood of Key West. The problems grew for you if you did not want to relocate to such a bad area and basically become a shut in unless you felt ok putting your life at risk by trying to go about your normal daily activities in that section of town. The clients that were moved were told that they would honor the 30 day notice to vacate to the landlords that they
secured temporary housing with. The construction took longer than expected and there were many delays and we were told that it could be October of 2008 before we would be moved back in, so we went ahead with our plans to take a trip to relieve some of the stress created by all the aggravation of the move and what we were having to deal with at the hands of this ASO. We were suddenly called in on July 7, 2008 and told that we could move back into our unit August 1, 2008. Not only was the unit not complete as the windows were not sealed properly and had gaps that were not closed, the door had also been cut at the bottom and there was an inch to and inch and a half opening at the bottom of the door. With my and my partner’s situation we were not given the opportunity to give that 30 day notice and when we explained that we had already made plans to be out of town and could move back to the ASO’s housing property the following month, we were then threatened that our housing unit would be taken away from us if we did not move back by August 1, 2008.
During this ordeal other clients were treated unfairly as well. One client was even threatened with retaliation by the Director of Client Services. The client was accused of possessing stolen property when the property in question was given to her by a member of the Board of Director of the ASO who was friends of a client that had died and left the property for him to give to whomever he thought could use it. The Director of Client Services of this ASO also told the client that if she did not stop causing trouble she would make sure that she did not get to move back to the property after the renovations were done. That client decided to not move back because she did not want to have to deal with the stress of living on the ASO’s housing property and having to endure the abuse from the Director of Client Services.
Because we did not feel we were being treated fairly and expressed that to no avail we decided that our next step should be the established Client Grievance/Complaint procedure set up for the clients of the ASO. We decided to file a Grievance with the ASO and followed the instructions on how to proceed. We followed the steps and filed our Grievance with them on September 8, 2008. The ASO’s Director of Client Services thought she did not need to follow the steps and never replied to our Grievance.
It was not until December 19, 2008 that we got a response through our Case Manager that the Director of Client Services thought we did not want a reply since we did not ask for one and labeled our Grievance as a complaint and told us we had no Grievance even though the Client Grievance procedure identifies it as a Grievance/Complaint. We replied to the Director of Client Services that we wanted to go to the next step of the Grievance Procedure since we did not agree with her decision. We followed all of the steps of the Client Grievance procedure and clearly stated our concerns and points to which was twisted with double talk and condemnation. It took until July 3, 2009 to ever get a proper response to our Grievance. We had been asked by a Board Member that sat on the Housing Committee to resubmit a prioritized Grievance and express a desired resolution to our Grievance. We did that and that is when the run around and then the insults and lies towards us began.
The Executive Director after seeing we were not going to let the issue with our Grievance/Complaint go decided to resort to insults and libelelous statements against us. But we persisted anyways as we knew what he (the Executive Director) and his cohert the Director of Client Services were trying to do, break us down.
We had our Grievance hearing with the Executive Committee of the ASO finally in September of 2008. Those in attendance were hand picked by the Executive Director so the hearing was never going to go in our favor no matter what evidence we presented, so we dropped our pursuit of the Grievance with them. Regardless of the outcome of the Grievance/Complaint Hearing we had already decided we would be leaving the ASO‘s property and Key West altogether.
At the end of August my partner and I gave our 30 day notice to the
Landlord that we would be vacating the unit and followed the proper procedures with the Key West Housing Authority to have our Section 8 Housing Choice voucher transferred to another county.
We decided we did not want to reside in Key West any longer for a number of reasons besides our issues with AIDS Help Inc., but the issue of what we dealt with and how we were treated prompted us to move to St. Petersburg, Florida where we have so far found a totally different environment with one of the ASO’s there. Our new ASO treats us like an ASO should, with respect and courtesy, which is the way that AIDS Help Inc. used to treat their clients before the current Executive Director reign. Key West ASO would rather focus on making things look good on paper to get more money instead of treating clients with respect and fairness.
By focusing on making things look good on paper an AIDS Service Organization is doing a disservice to its clients and to the communities they serve. Improper moving of funds from on line time to another is common place with the only ASO in Key West, Florida and because things are done so well on paper there is usually no question on what they have done and continue to do by the agencies and entities issuing the monies .
I plan to get involved with the process in my new area and try to lend my voice to help keep the voice of someone living with HIV/AIDS heard. I am taking my time with jumping in to something because my level of trust in those in charge of providing care and service has been tainted by being burned by the ASO in Key West, Florida.
St. Petersburg, Florida