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Unread 03-14-2017, 12:18 AM   #11
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Default Re: Who are the advocates

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Originally Posted by BeyondtheRainbow View Post
My local office is inexperienced period. They are overworked and it is just chaos dealing with them. My caseworker didn't even mention this when I finally got her to tell me spenddown was gone (6 months of calls).

I don't have community services; I have a private therapist and pdoc.

I'll try the hotline. It can't be worse than my community services. (I'm always a little bitter because my previous county was on top of everything and this one I can't get an answer to a basic question).

Thanks for the info!
I agree dealing with local office is just mind numbing. They have no clue of the changes going on and how to enroll people into stuff. What county are you in ? I am in Cuyahoga. Caseworkers never tell ya stuff either. I like you had private services outside the community so my referral came through the Dept of Aging (???) they approved me last month and who know when it starts
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Unread 03-14-2017, 12:25 AM   #12
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Default Re: Who are the advocates

I'm in Guernsey. I was in Cuyahoga today though. Cleveland clinic pdoc.

I've never had my spenddown work. I only qualified twice and both times it didn't get billed and I called over and over (need to call again) and nothing changes; medicare pays its' parent and I pay what Medicaid should pick up. I think anything I send in is just thrown away or something. Last year it took 6 months to get a renewal done because my caseworker had changed and the 1st one didn't change my address as requested so the papers didn't get to me. Then they got ridiculously picky about paperwork I'd never had to submit before. They topped it off with thinking I still owned a hone I'd sold by the time I lived here.

They just frustrate me no end. I dread dealing with anyone again. Maybe soon.
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Unread 03-14-2017, 01:50 AM   #13
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Default Re: Who are the advocates

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For those on SSDI with JUST medicare and are under 60 yrs old?

I have an issue with my state attaching Medicaid as a secondary insurance - it has been locking me out of services for 4 yrs. I do not qualify for medicaid. I lost many providers over this issue and most recently in Oct 2016 and still can't find a "medicare" therapist for trauma. I am in a midst of a Social security review and I am scared with no provides to say I am still disabled is concerning to say the least. That medicaid error put me in a really bad spot. Not to mention it could be fraud. From my understanding the states get money for every person who is enrolled into medicaid. That would be f#$^ed up if that was the case they made $ off me and blocked my services. Which leads me to next part....

I reached out to Disability Rights in my state and they could not help me reason given "I am not what they consider a priority" That sure hurt smh....

I called the Ship (state insurance ofc who deals with medicare/medicaid) I explained what was going on however because of my age 46 I am not a part of a population they serve. They deal with the elderly.

NAMI - Wasn't helpful either. They are more concerned with another population and that is Medicaid.

Who the hell helps the younger folks who have SSDI/Medicare???
NAMI doesn't give out medicaid.
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Unread 03-14-2017, 12:39 PM   #14
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Default Re: Who are the advocates

[quote=shortandcute;5534955]NAMI doesn't give out medicaid.[/QUOTE

I know NAMI doesn't give out Medicaid. From my dealings with them they advocate and help those who HAVE Medicaid more than people with Medicare only. Those on Medicare have the least amount of mental health services available to them with not enough providers on panel + high co pay's etc. NAMI doesn't fight for that inequality. They need to be the voice for those with Medicare too - to help get better services available. They helped many years ago with part D coverage for meds. That's great. However in my case sprinkling pills on social anxiety, agoraphobia and complex trauma does make those issues go away without having access to therapists.

Last edited by anxiety247; 03-14-2017 at 12:55 PM.
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Unread 03-18-2017, 07:00 AM   #15
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The State has a lot to say about dual benefit eligibility so I'd keep hammering away at your State people for help:

https://www.cms.gov/Outreach-and-Edu...t_a_Glance.pdf
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