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Author Topic: (Long) Expressing my disapointment in HIV/AIDS service organization.  (Read 6103 times)

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Offline RobinL1962

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  • Posts: 22
Oh God help me, I can only imagine the variety of responses this post might bring :D I posted one another time. This time I am posting, because it makes me fell better to express my hurt and disappointment to people that are in a similar boat as I. Fell free to put me in check  ;)

I went yesterday to meet my case manager. I had to apply for indigence to get health care and medication help. Just part of the ball game. I asked to start receiving groceries and meals from our HIV/AIDS service organization again, I was told I would be put on a waiting list. Some reason that just hit me in the wrong way.

I had to do what I felt was right. Is it emotional, yes. Is it angry? yes? It is allot of things, most important it is healing for me. I never learned the idea of write a letter and burn it, I send it.  ::)

It provoked me to write the following letter to Lifelong AIDS Alliance executives. (Seattle, WA. USA)

Dear Lifelong AIDS Alliance Executives,
My name is Robin Langdale,  I am a 46 year young man, I was diagnosed (G.R.I.D. gay related immune deficiency) HIV positive in 1986 (23 years).
 The economy is hitting everyone hard. I stopped using the grocery and meal service over a year ago because, I had been given generous amounts of food by your food bank and no longer needed the service, so I did not want to be taking from someone who really needed it. Well, I need it now and I am told by my case manager there is a waiting list, which we proceeded to put me on.. I am emotionally devastated and hurt. I have never felt so rejected and turned away by my own community.
Here is some of my history:
1.In 1987 and 1988 I volunteered and cut hair on men that were days away from dying at CCAP (Concerned Citizens for AIDS patience) San Diego
2. Being Alive San Diego, I was a volunteer receptionist for 2 years and was honored as "Receptionist of the year" I also cut hair there for a year and a half on clients.
3. In San Diego I was 2 different titles holder and spent 2 years entertaining  and making appearances at every HIV/AIDS fund raising event there was.
4. An original member ACT UP San Diego and Pozzabilities
5. In Wichita KS at Positive Direction, I was the only volunteer that worked their food Pantry for a year.
6. In Seattle, I have been a mentor (HIV Buddy) through The Dunshee House, I cut hair at The Bread of Life Mission for a year and a half. I was a member and active volunteer outreach person for over 2 years the Recovery Cafe. Last year I was the volunteer site coordinator of the Belltown P-Patch
Please know I am very grateful for meals and groceries you supplied me and I wrote more then 1 thank you note to express my gratitude. My experiences within the food bank by other clients was so disappointing. Clients grabbing free stuff, not by what they needed but who they could give it to, friends, family etc...One experience was a case of Roma tomatoes and 6 pineapples were just set out and a little old Asian lady took 1/2, yes 1/2 the case of tomatoes and 4 of the 6 pineapples (staff and volunteers did not want to get involved so myself an another client finally put a stop to it. I wondered then what the guys that have passed would have thought. In the beginning it was JUST the gay community (I KNOW) and we were on our own to fight for our rights as human beings, and fight against attitudes of "we deserved it", " God's will", we had a president that would not even say "AIDS". When it was discovered it was NOT a Gay disease, we were there with open arms to assist and invite everyone into our different grassroots organizations.
Now here I sit on a waiting list. I given a hell of allot more then I have ever taken.
I understand the face of the disease has changed and its treatment ( I have been here the whole time) and life expectancy. I am not looking to be put in the front of a line because I wrote a letter. I can not help but think, it is time to take a good look at your food program. How it can best serve the most people. Is greed not allowing you to serve the most people? Is not being on top of the activities in the food pantry preventing you from serving the most clients? Have you grown TOO big (staff) and not serving the basic needs of the community in which  you are suppose to serve? Do your donors know you are putting people on a waiting list? Has LLAL expanded past the HIV/AIDS community and is the community AND donors aware of it? Are you supporting, non -productive, non-serving programs?These are all valid questions.
I can not help but think of the men that have passed in the beginning, did they die in vain? Some of the staff is not even old enough to know the devastation of AIDS on my community. Maybe a history lesson is in order.
All I can say is I am hurt, disappointed, and feel abandoned.

Robin Langdale

Offline Dwayn20

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Re: (Long) Expressing my disappointment in HIV/AIDS service organization.
« Reply #1 on: April 30, 2009, 04:47:09 PM »
Dear Robin I understand what you just wrote about.Just this morning I wrote something similar to what you have expected.I have done my share of volunteering and got burn out from the things I had seen.If you get a chance to read my last post in When It Rains It Pours you will understand what I have been talking about.What you have posted is nothing to be ashamed about as far as I know we still have the freedom of Speech.I am much like you it helps me to write the post to get them out there.Yes I am shore there will be people that don,t like it.What I say is Tuff we have dealt with enough crap an see a lot more than any of the Case Worker I have seen in the last twenty one years.My heart is with you on this subject.I used to worry about who may read what I have wrote then it hit me they are not giving the help I need.So what can they take nothng !!!

P.S. Robin My Offer Still Stand You Can Contact Me Emails is in my profile
« Last Edit: April 30, 2009, 04:49:38 PM by Dwayn20 »

Offline RobinL1962

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I am on a approx a 12 week waiting list. It is working out. I have been in touch with Lifelong, asking what can I do to be part of the solution. So, as told I wrote to the King County web site HIV feed back, and expressed my disappointment. I also have an interview today to be on the board of the Seattle HIV/AIDS planning council. next week Seattle Gay News wants to talk to me, one about what as a community can we do or should do to resolve the wait list, one idea was to make the AIDS walk money go to food pantry. Another thing the editor wants to discuss a story on me and long term surviving for the Pride 25th anniversary of Stonewall edition. I guess it is not my path to rest. It is all good I feel driven by something bigger then I. I am too emotional right now and wish that part would pass.
very much appreciated....Robin

Offline AlanBama

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Hi Robin,

I thought you wrote a great letter, and I feel your pain honey.

I am lucky and blessed to receive a pretty good SSDI payment each month, plus I am still able to work part-time and I earn up to the maximum allowable each month.   I am not doing without food, or the basic necessities of life.   To know that people can't get the food they need  just makes me ill.  I hope your letter has a positive effect in helping you out.

I have been facing some hard decisions regarding my medications.  My state (AL) has me in a program that pays my Part D premium (which I am thankful for) but after they run January meds through the insurance carrier, I am left in the donut hole for the rest of the year.   I am tired of having to beg some type of caseworker for help with a couple of expensive meds that I am on.   For those who have never had to ask for help, consider yourself most fortunate.  It is not a pleasant thing, and it is quite demeaning (to me, anyway).

I have seen a couple of these Republican commercials about health care, and "how we certainly don't want GOV'T run health care to cause us to lose our ability to make choices about our healthcare".  DUH, what planet are these clowns living on?  Make choices?   Who can even AFFORD to get any kind of health care, let alone worry about who is going to provide it?  One of their ads actually made me laugh out loud.

I do feel your pain, and hope you can get the help you need, and REAL SOON.


Alan  :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Lis

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My ASO sounds much like yours... 15 folks on staff and no help to give.. I am trying at this point to choose between 5000.00 in meds, or bankrupting my family.. You would think that a person whom has never ask for a GD thing after living with this shit  since 1986 could maybe be supported a tad..  and I don't mean with stuff, maybe alittle emotion would be nice..

Best of luck to you, and thank you for all that you have done for our brothers and sisters  :-*

poz 1986....

Offline Dwayn20

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  • dbscooter0@gmail.com
Hey Robin 1962
Glad you started this I thought it was just were I live.Were I live if you are from New Orleans they will pay your rent and all the stuff you need to live.I said this before they spend 80% of the moneys on administrative.That leaves nothing for anything else.We have a Food Bank half the stuff is out dated or things you can not use.I have seen the change for the worst I was tested in 1988 so I have seen and done a lot.
Scooter >: >:(
My challenge still stands I would like to see someone than works at any AIDS organization or any Politician try to survive on SSI or any of the checks.Don,t get me wrong I am fortunate to have it. But when you pay everything on the first of the month your broke.I can,t get food stamps because they use his income against me.But try to have a partnership they say no.Unless it works to there advantage so now we are just roommates.
« Last Edit: May 04, 2009, 07:06:54 PM by Dwayn20 »

Offline lipoenvy

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I don't think your letter was at all out of line.  I also live in Seattle and have had both positive and negative experiences with Lifelong.  The food program was an important stopgap solution for me when money was very tight.  What you are doing by bringing this problem to the attention of management and donors, and trying to be part of a solution, is the most constructive reaction I can imagine.

But supportive responses don't fill your refrigerator.  While you're waiting, have you checked out Northwest Harvest?  I bet the Cherry Street Food Bank (between 7th and 8th) doesn't put you on a waiting list.


Offline RobinL1962

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  • Posts: 22
Hi Everyone,
I attended the Seattle HIV/AIDS Planning Council meeting last night as part of the requirement to become a member of the council. I interview as a client/consumer Representative June 2nd.
It was brought to the councils attention of the letter written by myself and others that I asked to write and Lifelong AIDS Alliance (Seattle) was contacted regarding the 3 month wait list for grocery and meal service. In King County there are 163 people on the wait list. A wait list was not acceptable to a member who is a client representative, and the following action was taken.
At the meeting last night an additional $38,500.00 was added to the grocery service. At $14.00 a unit, that is 2,750 bags of groceries. That will add 53 people getting groceries for a year.
It does not take care of the wait list but it is an improvement.
Thanks for your support,

I would like to encourage everyone  that can, to volunteer at whatever capacity you can at your local HIV/AIDS service org.'s. It is really helpful if you are dealing with isolation. Also, if warranted a "Thank You" you note goes a long way. Even if not to the organization send a Thank  note to the volunteers of that organization.


Offline Pozinmaine

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Way to go Robin!

Fight back!  These agencies were founded primarily for and by people with AIDS and have become prevention entities and surveillance agencies for the feds who are interested only in who you're having sex with.  Earmark your contributions VERY SPECIFICALLY for programs that help people living with HIV or even better for the food pantry only.  Prevention is not our problem...surviving is.  I have watched as my 20 some years of contribution despite living with AIDS become social clubs for negative men who are saturated by the prevention message and just don't care....It's time for us to take care of ourselves!

Here in Maine, you can get no help if you don't want case management...another useless endeavor.  This is largely due to the fact that Ryan White funds come with strings.  They call case managers the "gatekeepers of services"....I call them barriers to care.  For every wasted hour I spend trying to navigate the system, I spend two trying to pursuade legislators that they are wasting the peoples money on such a system.  I have yet to receive any help from case management service despite piles of paperwork and several different agencies.  All I wanted was the name of a dentist who had no issues treating me and some other poz folks to interact with....not much to ask, I didn't think, anyway.  LOL 

Offline Dwayn20

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This is going to be mean. Going to see a Case Manager outside should read [ Abandon All Hope All Yea How Enter Here] If you have a case manager you have to jump throw hoops . Have this filled out and come back I,m sorry you must wait till you get a disconnect notice for your electric are we can not help you till you get a eviction notice before we can help you. I don,t know how anyone else feels but I will do anything with in my power to avoid any notices.

Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #10 on: May 13, 2009, 03:41:15 PM »
My "caseworker" does anything besides work on anyone's case.   Here is a typical example of the help you get at Birmingham AIDS Outreach:

I spent last Thurs night at UAB having a sleep study conducted; after being dismissed on Friday morning, I stopped by BAO for gas vouchers (they give us who live over 65 miles away $20 in gas vouchers).  I was told that "it's 9 o'clock; we don't give any vouchers out until 10 o'clock".   I said "well, I understand your policy, but I'm here, I've been in the city away from home since 5 o'clock last evening, and I'm kinda tired".  Tough luck, too bad, so sad...   I left without the gas vouchers.

I am to the point where I am poor, and I don't mind asking for help; but I will not stand idly by and be demeaned and disrespected.   I don't need their help that damn bad.   I will beg on the street corner or beg my family for help before I will beg them to help me.  I'm like Lis here, I'm past the point of begging any ASO for help.  It's a shame how one person can put a bad taste in your mouth for an entire agency.  But when it happens to be the ONE person you are forced to deal with.....
My previous case worker there was very kind and helpful to me, and sometimes went out of her way to do things for me, and inform me about things that I could benefit from.   This one looks down her nose at me, as if I'm some ignorant street trash that she can't be bothered to deal with.   My theory about her (and everyone else I have ever dealt with in ASO's) is this:  I will out last you.    I'll still be here when you are long gone.   So have your day in the sun, and if it makes you feel powerful to disrespect people with AIDS, then more power to you.   I will, in the end, survive -- with or without you.
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline aztecan

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  • Posts: 5,508
  • 30 years positive, 58 years a pain in the butt
Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #11 on: May 15, 2009, 02:28:40 AM »
First, I would like to preface this by saying I am a case manager for an ASO.

I am also a long-term survivor, who tested positive with HIV in 1985 and, prior to being a case manager with this ASO, I was, off and on, a client.

So, I've been on both sides of the issue.

I would like to congratulate Robin on his affirmative action. Trust me when I say there are many services that would be difficult to provide without help from volunteers.

I also understand people get upset with their ASOs or their case managers. But please remember there are times when the case manager is just as frustrated or upset because he or she cannot offer the services the client needs.

As the economy has worsened, I have watched programs being cut.

Many food banks have closed altogether. We have been lucky to have a staff that went the extra mile to find alternative funding sources to keep the doors of our food bank open.

Case managers also are being required to do things that are far and removed from direct services to clients.

I also hear those who say their case managers are often cold or unfeeling toward them. For some, that is their way of dealing with the fact that many of those they are serving won't survive.

For being such a chronic, manageable disease, a lot of people are still dying.

Few weeks pass when someone in our agency doesn't report the death of a client.

I know these people care about those they serve.

Now, I'm not saying there isn't room for improvement. There is always room for improvement. In my office and regarding myself, I am sure there is room for improvement.

I also cannot speak for every ASO across the land.

But I can say, in my experience here in the Land of Enchantment, the people serving the clients often go above and beyond to do whatever they can.

Just my 2¢ worth.



(Edited because I got really long winded.)
« Last Edit: May 15, 2009, 02:39:10 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline RobinL1962

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Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #12 on: May 16, 2009, 12:06:44 PM »
This article is in this week's Seattle Gay News. I am grateful the need is being presented to the public.:

Chicken Soup Brigade still working and caring
by Shaun Knittel SGN Staff Writer
One year ago, Robin Langdale told Life­long AIDS Alliance (LLAA) executives he no longer required the Chicken Soup Bri­gade's (CSB) service. The organization feeds hundreds each week with bags of gro­ceries, fresh meals and soup. These meals are an important part of maintaining the health of people living with HIV/AIDS and other life-challenging illnesses. Langdale, HIV positive for 23 years, utilized the ser­vice when he felt he needed it, and termi­nated it when he felt he did not.
"The economy is hitting everyone hard," Langdale wrote in an e-mail to LLAA ex­ecutives last month. "I stopped using the grocery and meal service because I had been given generous amounts of food and since I no longer needed it I did not want to be taking from someone who really needed it. Well, I need it now and I am told by my case manager there is a waiting list, which we proceeded to put me on."
Langdale said he was emotionally devas­tated and hurt. "I have never felt so rejected and turned away by my own community," he said.
Langdale is not alone. He shares a list with 228 clients currently not receiving CSB as­sistance. The average wait time is 12 weeks.
Unfortunately, said Director of Chicken Soup Brigade Nutrition Services Patrick Schultz, there is little they can do because the need for assistance has outgrown dona­tions.
People are living longer with HIV/AIDS, Schultz told SGN. "That is a great thing, but it's changed the role of CSB from a short-term need to a long-term program." People need us indefinitely, he said.
"We contacted Mr. Langdale and spoke with him at length," Schultz told SGN. "His decision to stop using our service a year ago so that others may benefit is admirable. We're sorry for his present difficult situation and we hear that he feels hurt and disap­pointed."
Additionally, the pool of clients CSB feed continues to grow. According to LLAA Di­rector of Marketing and Events Asia Rau, CSB is currently serving more people than at any time in its 25-year history. Thousands benefit from the food program every month.
"To cut costs and maintain quality ser­vices - and feed more people - during these tough economic times, LLAA eliminated
positions, limited our hours of operation, and conducted program specific cost-cut­ting measures such as eliminating expen­sive menu items from our prepared meal program," Rau told SGN. "At some point we would love to bring back the pot roast and mashed potatoes, but for now were are concerned with feeding as many people as possible."
"Our hope is that we can move clients through the waitlist and onto food services as quickly as possible," Schultz said. "As space on the program becomes available, please know that we quickly make resources available to those in greatest need on the list."
Even though federal funding for food services to people with HIV/AIDS in King County shrank by 20% in the past year, CSB is bracing for an anticipated 50% reduction in stating funding next month. That puts CSB in a bind, say officials, as the organi­zation relies heavily on donations from the community in their effort to sustain the pro­gram.
"We continuously reach out to donors, event attendees and the public to explain what CSB does for clients," said Rau. "We just completed Dining Out for Life April 30, which will greatly benefit CSB as well as LLAA as a whole."
Still, its not enough, said Schultz. "I don't want to say we need more from the commu­nity [Capitol Hill] because they are already so supportive - be we can always use a little more."
The public can help by donating directly
to CSB, officials said. "You can help by par­ticipating in Care to Shop through our gro­cery store partners as a volunteer or shopper, set up a food drive at your work, school, or church," said Rau.
The Chicken Soup Brigade's range of re­sponsibility is all-encompassing. The orga­nization not only feeds; they inform. CSB provides nutrition support for people in need throughout a four-county area that includes King, Pierce, Snohomish, and Kitsap. De­pending on clients' eligibility, CSB officials told SGN, clients receive a bag of frozen, prepared meals once per week, and/or a bag of groceries. Schultz said the clients who are mobile can pick up their food at one of several pickup centers. Housebound clients receive delivery.
If you get down to everything that CSB does, it quickly becomes clear just how much the organization is in need of volun­teers and donations. On a weekly basis, CSB provides over 1,000 bags of groceries, dis­tribute 4,500 meals through a pick-up cen­ter and the home delivery program - plus, it takes 80 volunteers to deliver groceries and meals to CSB homebound clients.
"We don't want to have a waiting list," said Rau. "But this is to make sure our lim­ited resources go to those who are most in need, therefore we have a list, which we pri­oritize according to the sickest and poorest people first."
CSB and LLAA have many opportunities to volunteer or donate. For more information you can visit their website at www.LLAA. org.

Offline rogerc

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Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #13 on: September 30, 2009, 10:42:00 PM »
Worked for an ASO for 10 years. Unfortunately Ryan White reallocated grants usually specifically require that a grantee have a waiting list to receive additional funding. Often ASO's are forced to create waiting lists to qualify for the funding. Red Tape that ASO's must navigate at the cost of clients -- unfortunately.

Offline MarcoPoz

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Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #14 on: October 01, 2009, 02:32:38 PM »

You are a class act!  Great way to deal with the situation.  Your words were very moving and so is your attitude.  Hang in there and thank you for showing us an example of how to keep fighting with grace.

Offline AlanBama

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Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #15 on: October 06, 2009, 11:10:24 AM »
I'm very pleased with your efforts Robin.   Great work!

I've been trying to get pharmaceutical assistance from Boeringer (makers of Flomax) for over 6 months now.   They are playing one of the wildest games of 'hoop jumping' I have ever been exposed to.   I mail them something -- they wait two weeks, mail it back, and say "now we need such and such".    So I fax them the needed item....they wait two weeks, mail it back, and say "we needed it sent with the entire package that we originally sent back to you'.

It will be interesting to see how this eventually plays out.   I would have given up long ago, but I really do need this drug, and I just can't afford it.  I am tired of begging for assistance to pay for it.   I can be a persistent SOB when I have to be.   Send me a piece of paper requesting copies of something, and I will send it right back to you with that PLUS 5 or 6 items that were not requested.  Now, I have started FAXING them the entire package each time, then putting it in the mail.  I really do get their game -  it's all about making it so difficult to get help, that you will give up and stop trying.  I haven't given up yet.   I'll let you know how this one plays out.


"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline aztecan

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  • 30 years positive, 58 years a pain in the butt
Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #16 on: October 09, 2009, 10:12:34 AM »
I  I really do get their game -  it's all about making it so difficult to get help, that you will give up and stop trying.  I haven't given up yet.   I'll let you know how this one plays out.



Alan, you've hit the nail on the head. I often see commercials for drugs that, at the end include a statement saying something like "if you can't afford this medication, this company might help."

My experience has been that applying for help is such a convoluted mess that few will actually see it through.

Hang in there hon. I hope you get the help you need.

I know how you feel about being unable to afford your meds. I just picked up my monthly refills. My copays were $248, of which $197 are copays for my two HIV meds.

What can I say, I gotta have them.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AlanBama

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Re: (Long) Expressing my disapointment in HIV/AIDS service organization.
« Reply #17 on: October 16, 2009, 12:04:18 PM »
sorry for this hijack , but good news:  I received notice from Bohringer that I am approved!  They will be mailing my Flomax to my doctor's office.   WOO HOO.

Slow and steady wins the race.

of course, that only takes me through the end of this calendar year.  After that, it begins again.....


hugs, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz


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