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Re: Interesting article about long term survivors over 50:

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aztecan:

--- Quote from: flashdance on June 03, 2013, 04:15:21 PM ---Another slant to this....

It is one thing to be able to live for 20+ years with HIV....but then those great service provider individuals that have always been there for me....are retiring.

I continue to live and wonder who will be my advocate in public health or at the doctor's office. It is disheartening to hear that your primary HIV doctor is retiring. It has been disheartening that two case managers that have provided the connection to services have stopped working.

I (and I assume most of us) advocate for ourselves...but who will take the place of those service providers that assisted us and loved us and respected us?

--- End quote ---

This is a nagging question that vexes many of us. We nearly lost the only HIV doc within a 200-mile radius recently. Gratefully, there was a reprieve, but that spectre is always lurking in the shadows here.

I fully understand what you said. I think this problem will be augmented when ACA kicks in and there is a systemwide adjustment for all of us.

We must remember to continue to advocate for ourselves, even when faced with so many fresh or unfamiliar faces.

HUGS,

Mark

BT65:

--- Quote from: aztecan on June 04, 2013, 07:33:46 PM ---I fully understand what you said. I think this problem will be augmented when ACA kicks in and there is a systemwide adjustment for all of us.

We must remember to continue to advocate for ourselves, even when faced with so many fresh or unfamiliar faces.

HUGS,

Mark

--- End quote ---

When ACA does happen, it's going to be a nightmare for case managers, as you well know, Mark.  I've already had clients calling, asking what's going to happen to their insurance.  At the agency I work at, we have been able to get people on this insurance that's going to be going away (ICHIA).  We have nothing to tell these clients yet, since we have no idea what's going to happen.  That doesn't stop clients from freaking out.  I'm not looking forward to it, from a case management standpoint.

As for advocacy, Mark, I don't know if you face this, but I have so many clients who won't even come into the agency for fear of someone finding out their status.  I have very few clients who take care of their own benefits, will fight to keep what they have, etc.  And the co-workers at the office I'm at seem to keep a good number of clients dependent on case management to do it all.  I tend to go from a standpoint of having clients be more self reliant, coming from a view of "what will happen to them if we close?"  I'm the case manager who has the least amount of voicemails after a weekend or holiday, and tell my co-workers it's because I make people more reliant on their own skills.  We are supposed to move clients toward self sufficiency, after all. 

Habersham:


I think from a case manager's standpoint you are doing the right thing. When I had a case manager at an ASO I used to tease her that she was my Administrative Assistant. I had a computer at home but since money was tight it was often less expensive for me to take the bus to the ASO to have things photocopied etc. We communicated mainly by email. She would send me a hard copy of something if it needed to be fulfilled in that way or email me a link or a telephone # when appropriate. Although I wasn't able to work I could certainly make phone calls and fill out forms. I realized her time was more valuable than mine.

But what of the client that doesn't have a home computer? It's easy to say you can go to the library but computers aren't always available there and it might be two bus routes away. Many clients are intimidated by dealing with government and other agencies.  From working at nonprofits myself I came to realize that many people actually can't read or understand forms.

Client Advocacy has become so important because of this. I'm sure you attempt to make everyone as self reliant as they can be.

I was never embarrassed to appear at the ASO. But on the other hand I was usually mistaken for a case worker or volunteer.

wolfter:
Not sure why they wouldn't include those in their mid 40's with this virus.  Those of us lucky enough to survive are facing consequences earlier than actipcated.

Those of who were the youngsters of this plague never got the ability to mature after being given.....the results.

But I guess we'll continue on with the geriatric generation to age with this.  My goal is to be the oldest living person with HIV and be interviewed by Matt Lauer's son.

BT65:

--- Quote from: Habersham on June 05, 2013, 09:19:40 AM ---But what of the client that doesn't have a home computer? It's easy to say you can go to the library but computers aren't always available there and it might be two bus routes away. Many clients are intimidated by dealing with government and other agencies.  From working at nonprofits myself I came to realize that many people actually can't read or understand forms.

--- End quote ---

Well, there is a computer at our agency that clients can use.  And trust me, I understand clients' situations when they can't understand forms, benefit procedures etc.   I do help those people with anything they need.  One of my clients has dementia, though not progressed enough yet to be in an extended care facility, and I help him a lot with forms etc.    Plus I have a large amount of African clients who have no clue about the American system, which I help as much as I can.  Like for the first time, the insurance we help people get on, required all recipients to file taxes, even if they're on disability, even if they have no other income. Well, one of the clients who did this is African, whose mainstay is baby-sitting.  She found out she owes the feds over $1000, state over $200.  So we went to the IRS to set up payments. And there was no way I would let her go to the IRS by herself.  No way.  I felt bad for her and did not want her first experience with the US's government process to be a horrible one; even though it already is with the money she owes. 

The people who won't come to the agency are mostly Africans who want to keep their status hidden, even from other African friends, even from their pastors.  I don't make a big deal out of it, I just meet them where they're at.  I totally get people not wanting their status exposed, even when I don't care about mine (getting exposed).  It's still very stigmatized in the African culture unfortunately. 

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