Who are the advocates

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???

Have you thought about joining a Medicare Advantage Program. Those are designed for low income folks. I think they have to be pretty comprehensive and offer every kind of care you could need, including mental health services.

An advantage plan won't help. Would be paying more for less.

So do you have just straight Medicare? Were you covered by Medicaid in the past? Is thst what you mean by losing care providers you had previously?

I tried to get Medicaid while I was waiting for Medicare. My state had expanded Medicaid, so I still think I should have qualified during the two years I was waiting for Medicare. Having both does give you very comprehensive coverage, even covering dental and vision.

I kind of thought that, once you get Medicaid, you keep Medicaid. But I'm fuzzy on who gets it and why.

I understand things are different these days those who qualify for SSDI have to wait 2 yrs to get Medicare. Makes zero sense to grant a disability with no medical (medicare) coverage so you can get the treatment needed. I was granted way back in 2001 there was no waiting and the Medicare kicked in immediately. However the copays during that time was 50% for mental health. I think for folks these days who get the Medicaid while waiting for Medicare is dependent of the states eligibility/expansion might be dual eligible and could keep the medicaid.

I have had just straight Medicare. The state I moved to in 2010 Ohio has something called a spend down system to get Medicaid but you have to get over $400 in medical bills each month in order to unlock it for that particular month. I never met these spend downs. The state does help with my part B premiums that's it. Medicaid is far more superior than medicare could ever been in terms of comprehensive services. Mostly mental health related and the vision and dental is certainly a plus.

However the point in my post isnt about me getting Medicaid. It is how the state has screwed me by putting it as a secondary insurance that I never had and locked my services. That error is gross negligence and they need to be held accountable not to mention I do believe there is fraud involved. As I said the states get paid per person enrolled into Medicaid. I was not eligible during the times they had me on it due to my SSDI and resources being over the limits.

There has to be some type of advocacy group that fights for people who are disabled SSDI with a mental illness under the age of 60 with Medicare only. What frustrates me to no end is there are many groups fighting for Medicaid beneficiaries with this new administrations repeal of the ACA/Medicaid. Not that I am for the repeal or anything like that and trust me I made many calls to tell congress/reps to vote against it. I am frustrated by the lack of inclusion for folks with SSDI and Medicare we are at risk too of losing services not right this second but would be nice if groups like NAMI were easing our minds. Those with SSDI (mental health) + medicare are forgotten and that is sad. Points back to the fraud I was mentioning and why they don't fight hard for the forgotten is because the states are making $ off those with the Medicaid they don't make anything from Medicare folks.

Not that this is your point, and I'm sorry I can't help with your situation (I'm fighting a year long battle to get what I should have had covered my Medicaid covered) but Ohio no longer has spenddown for disability. It stopped last summer. I was in the program and wasn't notified so I think they kept it as low key as possible to avoid protests etc.

I hope you get this worked out soon.

I am also in Ohio. You are right there is no longer a spend-down. That ended in July. There is a new program in it's place called SRS (specialized recovery services) If you were seeing a community mental health provider you would have to a referral into this program if not then try Jobs and Family services for the referral. From my understanding medicaid reached out to those who consistently met this spend-down each month to get them enrolled in this SRS program. SRS is 3 services in addition to full medicaid. The income eligibility isnt bad either $2200 I think a month. Some other requirements. Give them a call.
The 3 services in SRS:
Case Management
Peer Support
Employment Services

http://medicaid.ohio.gov/Portals/0/I...DR/FAQ-SRS.pdf

I tried applying for the SRS program and somehow they thought I was applying for long-term care. I definitely did not check that box. My office is VERY difficult to deal with and VERY unhelpful. I'll try again though.

The local offices are very inexperienced at getting folks enrolled in SRS. If you go through a community mental health agency that might be a easier route for you to get signed up especially if you have a case worker. If you don't call the Medicaid consumer hotline #(800) 324-8680 explain you are disabled and had the spend-down and want to get enrolled into the SRS program. Or call NAMI Ohio they can help too 614-224-2700

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

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.

NAMI doesn't give out medicaid.

[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.

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