The Consumer Advocacy Committee had a Town Hall meeting on 07/30/2009 @ II Monestro to discuss Ryan White Transportation and Housing in St. Louis Metro Area. And it was a doozy.
Disclaimer: These are my notes and thoughts that I came up with on my own for whom no others will be blamed or credited. I am writing as both a consumer and an advocate of Ryan White funding here in the great state of Missouri.
It started of quite pleasant enough with the quite nice food line with a carver at the end. To myself I think, hey that is a great sign. Folks are not going top of the line nor or they being spendthrifts. They are catering the event as I would — high end of the middle of the road. They are treating everyone as actual attendee at a true Town Hall. I see some of the folks that I know as caregivers in this community ravaged by HIV/ AID’s. I see those surviving the disease through a vigorous and quite rigid regime of taking medicines at certain times and specific intervals. I see “The Panel” that will be speaking at the Town Hall to discuss the state of Ryan White Transportation and Housing in the Greater Metropolitan St. Louis Area.
The meet and greet goes ok. Yet I am surprised that no one is working the room. Folks are eating but no one is with soda in hand sweeping the room and not only making introductions to start the beginnings of dialogue but to get the feel for the pulse of the room and the general if not specific questions that will be raised. The call to the chairs and the commencement of the Town Hall proper commences and I am surprised by the lack of political be it local, Mayoral, or state representation. Do they not care or have they just become jaded? There is one individual to speak about Transportation and 6 ( I think) individuals speaking about Housing. Plus, one very nice women from the Bi-State Metropolitan Transportation Authority who also spoke.
It quickly become obvious that Transportation was where the rancor and divisiveness was this evening not to say that there seem to be some glaring problems in the area of Housing as well. The panel speak and then the floor is opened and the timekeeper fell down on her duties just a little due to huge number of folks that wanted top share their thoughts. It quickly became apparent that they consumer while quicklt being turned into a disenfranchised invisible social caste are quite intelligent in their questions and statements. The common thread was why were so many roadblocks put in the way to consumer driving themselves to their doctor’s appointments etc. Why does the thrust be towards the usage of taxi fare service? If I can and want to be as independent as possible and live as much as any other citizen in this country, why make it so difficult for me to drive myself to the doctor and be reimbursed. Now, whether this is an un-official policy or just one that over-worked and understaffed teams MSW’s don’t think to speak about I don’t know.
The line of thought is a good one I think especially with my background in finance. If we use our limited amount of resource pool in this way we will achieve X benefits but if we instead use it differently we can achieve X+10 benefits. Now we have an “extra” amount that can go to another much needed program still within the Ryan White guidelines. This is thinking like you and I do when we are deciding on the cost benefit analysis of making a specific purchase. Yet as my fear was, the thinking is the moribound way of thought of government spending for years. Use it or lose it or better yet use it all, have a shortfall, and write your proposal for next year higher explaining why you need XYZ in funding so that you can complete your mission. The idea that this is negative for a lot of reasons seems to escape folks. Folks that are sick that are safely independent are known to be much longer positive and value added citizens of this nation. This attitude should be supported. Luckily, my case worker does go the extra mile and helps me out with understanding about mileage reimbursement reports. It helps put the new face on this disease — that of the reasonably intelligent and well educated person. You can better use your grant dollar if you spend it more wisely and efficiently.
The words of the consumer and advocates all seem to go the same place. TRANSPARENCY. The same stuff is said each year and nothing is written or done about it. Why was their no Mayoral repsenetative? This is still sticking in my craw. If the the man is too busy to come yourself, then send one of your subordinates.
It seems that I am only going to be affecting much change by trying to join theses groups. Praying that they will have me as feel that there needs to be actual consumer advocates on these boards as these are are the only folks that are truly living with this disease day in and day out and can truly understand.
Stay tuned for Part III Ryan White Housing…..and it is not pretty. 
Much love,
mak
Mathew A. Koeneker
“Be Kinder Than Necessary,
Because Everyone is Fighting
Some Kind of Battle.”
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