Vozpozitiva de La Liga Contra el SIDA
The condition of HIV/AIDS in Miami-Dade County
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03/11/08
Unity in the Community
Filed under: General, Charlie Talks
Posted by: Manuel Laureano @ 12:03 pm

by Mr. Charles Leclair, HIV/AIDS Activist

There is really no unity in the HIV & AIDS community; that has been the case for many, many years. This is one of the situations in this county that disturbs me the most.  There are currently (2007) approximately 33,000 people with AIDS in Miami Dade County and we are #1 in the whole United States and #1 in the state of Florida. I don’t know what’s wrong with this community but they are not getting the whole total picture.  When I was the Chairman of the Miami Dade HIV/AIDS Partnership, I  always had a major agenda item for this community and that was to unify this community, and getting everybody on the same page, the Gays, the Straights, the Blacks, The Hispanics, the Whites, the Haitians, the Service Providers, etcetera…united across the board.  One of the biggest problems I have seen with the partnership process is nested in the Providers of Service group.

Lets take a look at the Planning Council (the Miami-Dade AIDS Partnership), it’s a great planning tool but it is supposed to be consumer driven, used by the community of consumers making sure that services are implemented in such a way that it is to the benefit of people with AIDS and HIV in Miami Dade county.  In my opinion, the bottom line reality of the Planning Council of Miami Dade county is that it is provider driven and is controlled by providers.  Out of a 40 member board, there are 13 consumer seats (not all of which are filled), and if something comes up to the benefit of the consumers the consumers always get outvoted.  Most of the items passed at planning meetings are passed to the benefit of the provider groups.

 

If we get more consumers aware of what is happening in this county regarding the planning for their care, get them all on one page, I strongly believe that we will be able to make a difference in the quality of our HIV/AIDS care model, implementing a holistic comprehensive continuum of care that addresses both Medical, as well as, Social Supportive services that cover all the needs of the community with AIDS.  All it takes is one consumer, one educated consumer to spread the word, because people in this community don’t understand how bad the situation can get for people with HIV/AIDS.  Unless people start coming around the table and start advocating for themselves as part of a larger group, the situation for people with AIDS in Miami Dade can get very bad.  Community Activist like myself and other AIDS Activist are not going to be around for long.  I for example, have been living with this disease for 15 years, and I may not live much longer.

 

Over the last two years comprehensive support services for people with AIDS have been going down hill, and since there really is not much consumer input to the planning process, the service system becomes Medicalized. The thing that consumers of AIDS services don’t know is how strong their voices are during the planning process, and how their opinions voiced as a group can create change. These partnership meetings are planning meetings designed to plan for the delivery of medical and support services for people with AIDS.  While I was active on the planning body there was always active recruitment of people with AIDS so they could get to the table and advocate for our population rather than being the representatives or the tokens for the provider groups like the primary health care centers, Jackson memorial hospital, and other institutions that get their money from the Ryan white care act titles I, II, III, IV sections a and b. (Do I smell conflict of interest?) The participation of people with HIV and AIDS on the partnership has decreased over the last years making the process skewed and driven in the interest of the providers.

 

I think and expressed while I was chair of the partnership that the time slots where the meetings take place are not benefiting consumer participation.  The time slots benefit provider participation.  I have addressed this issue many times and nothing has been done to change the meeting times.  In other planning areas of the State, where there is large consumer participation in their meeting, the meeting times are from 5-7 PM.  The way the meetings are structured now, between 10 am and 12 pm, the clients can’t get to the meetings.  We have to remember that during these times people with AIDS and HIV infection are working, or going to doctor appointments or diagnostic visits.  So the meeting times have to change to evenings so their can be an increase in consumer participation for the good of the HIV community.  Without this community participation many are going to perish.  The silence is going to kill them.

 

The bottom line is that everyone needs to join the advocacy groups and self advocate at these planning meetings.  Gain the knowledge of how to impact the system of care and execute actions in common.  I cant do it alone, I want to get a challenge out there, get yourself educated, get yourself tested, get yourself involved, because if your sitting home all day watching television, expecting people like myself to speak for you, those days are over, you have to be in one of the advocacy groups and self advocate.  The care situation is going to get real rough in this community if the consumers don’t get involved.  I see it; the hand writing is on the wall.  Every year, the federal government cuts our budget forces the system to get a more medical orientation, and this virus continues to spread, more people are infected and therefore the size of the population of people with AIDS is increasing.

 

10 Responses to “Unity in the Community”

  1. Manuel L. Says:
    This is the truth spoken out loud…
  2. Dave Says:
    So true!
  3. Allison L. Camacho Says:
    It’s a chame to acepted but, day by day still the same actitued. People and professional need to grow.
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