Somebody Ought To?
 

Advocate us for this or that...but this kind of forum isn't the place. AND then some folks never learn, nor do their medical 'associations' really advocate on behalf of the real sufferers. - US. Especially in the ways SOME of us truly need help.
Could we have a separate 'forum' or resources, or a 'resources' forum on how to work for advocacy of the multitude of medical issues we all deal with? I know many of my interests are well represented by some solid non-profit organizations, others do not 'care to respond', nor are they open about their financials to a degree that I could feel confident in contributing to them. I've very limited resources, I want open and honest organizations to give to. I do not think I am the only person here that feels FRUSTRATED that so little is being done to help US with our conditions, help us live with our conditions and help us maintain living with our conditions. While I realize Neuro Talk is NOT the place to do this...


Uh...WHERE IS? IF I knew where to go for certain types of 'help' at the key times I need help...well that's a shortcut that could get me on the 'waiting lists' for help that I need to be on?

Maybe a 'Who really Helps?' forum that outlines HOW they help and where they help, and how folks could find certain types of help in their areas would be a useful resource? Sort of a PLUG into key resources by city? I don't know. I am frustrated now trying to help others in a different part of the country for key critical medical issues and help.

I guess we just have to keep doing things piecemeal and go on - I can't say I like it? I am obviously frustrated with all support systems for those of us who have one or more key medical issues. Thanks for letting me plain old VENT!? - j

I was thinking a useful forum would be one that has resources, like you ask about, as well as hints and tips for dealing with all the medical "red tape" and such.
So many patients have learned these things the hard way and their knowledge might help to make the journey a bit easier for someone else.

Like tips on navigating through the various insurance companies and the paperwork {or denials}, dealing with Drs. offices & staff, government services-SSI, Medicaid,etc - and all the red tape and paper work and hoops many medical patients need to learn about and deal with.

Many of these kinds of things are mentioned in separate forums but much of it could apply across the community.

Oh dear, I'm worried that you're upset that I asked about how to ask for relief???

If you are, I'm sorry.

I'm sure that someone on the forum must have an idea.

and now I can't get the court CDs to play and I'm also sure someone probably knows what I need to download.

And quite honestly, I have no idea what "advocating" for US is... I mean, I've never found anyone to advocate for me. Mostly people are delighted that I'm easy to take advantage of. Realtors have made the most money on advantage taking.

:confused:

Oh I personally think this is a fantastic Idea.

I'm a advocate for the state of Indiana. But I usually work
for helping parents get the right in schools for their kids.

But I do other things too. Just today I learned of a young
lady that needs a new walker and is in need of help getting
her Vocational Rehabilation case reopened. Thanks to a caseworker
who wasn't to willing to help by coming to her when she doesn't
have the transportation to get to him, it was closed.

She lives in a small rural community, and the only transportation
that she is guaranteed is a ride to work. She works for walmart.

But to help get to work, she wants to do a driving school. And
needs vocational rehabilation to help set it up. But the person
wasn't willing to work around her schedule at all. So I'm on
the case and going over his head.

And I'm working to find the agencies that help with walkers.

Our state doesn't have a good Celbral Palsy organization so I've
got to do some research.

Donna