This is a very real concern in several states. But, that said, where I live, some of the Medicaid providers (yes they had “managed care” type plans here) will not pay for MH services for anyone over 21. To me that is disgraceful.
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I work with adults with intellectual disabilities in MA. These individuals start off receiving SSI and Medicaid due to their limited assets. When one of their parents retire and enroll in Medicare, the disabled dependent will receive SSDI (on top of SSI) and will be eligible for Medicare after two years (at least in MA). After individuals get Medicare A and B, they will also get Medicare Part D (medications), too.
If you ask me, things are more complicated when my disabled individuals receive Medicaid (Mass Health) and Medicare. I wish they could stay solely on Medicaid (Medicaid in MA is called MassHealth). Here, Mass Health Standard (there are many levels of Mass Health) is excellent. It covers almost everything.
I don’t know any individuals who turned down Medicare. I think it is called Opt out. You want to be sure if your son can opt out and whether or not opting out will have negative effects on him down the road.
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I’d take the Medicare as well because it’s a more stable payor than Medicaid. Medicaid is state-dependent and if you move or even travel to another state you would be in a different program. Medicare is national of course.
Different issue but I just had a bunch of pharmacies refuse to fill a brand-name drug due to its low Medicaid pricing. Now I’m seeking reimbursement and the Medicaid Managed Care is unhelpful to say the least. Medicare would be much easier to work with.
See, my issue is that in Maine, we have NEVER had any issues with Medicaid (MaineCare). My son has had meds that cost $28,000, many ECT sessions that are thousands of dollars each, and hospital stays of months. I don’t have to do a thing. So I’m very hesitant to rock the boat. We will not move him from Maine, because he has an excellent housing situation. Yes, things could change, but I’m not sure it’s worth the chance. If suddenly, his six-month injection were not paid for, that would be a big deal because it would stress him out. Stress = psychotic break. 
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I’d be wanting to stay with the Medicaid plan if it’s been working well. But… it would be good to research to understand if there are any life-long consequences if Medicare is turned down now.
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I’d recommend to speak with somebody in member services at Mainecare and ask about how it would work for an SMI (severely mentally ill) Mainecare member who then becomes dual-eligible on Medicare also. Ask all of the questions you have so you can confirm that there would be no penalties or negative impacts to such a person’s care if he/she/they choose to NOT also enroll in Medicare if they are Medicare eligible.
What you do NOT want to happen is that his Medicaid access to care gets affected or downgraded in some way because the state gets notified by CMS (who handles Medicare) that your son is Medicare-eligible. For example, I could see a situation in which the medical provider’s claim to Mainecare initially gets denied stating to submit claim to Medicare first.
In the situation of your son’s $28k/mo medication, if Medicare doesn’t cover it, the Medicare claim would deny and then the claim would get processed for Medicaid and Medicaid would pay it.
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Thanks, I will call MaineCare now. I’ve tried calling so many places that can’t help, but maybe MaineCare can.
Another thing to consider is that if he does not choose Medicare now, are there restrictions or limitations on choosing Medicare later?
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You might want to call your main providers and ask their opinion on Medicare. I found it very helpful In picking a Medicaid expansion managed care company.
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At least in MA, law requires pharmacists to fill prescriptions with generic drugs when available. Brand name drugs can be dispensed only when needed and with a doctor’s specific order. MassHealth won’t pay for brand names if perceptions do not meet the criteria.
That’s also true with my private insurance.
Medicaid can be weird and is not always helpful, at least in the MCO Medicaid expansion program.(I think @MaineLonghorn is in a different program of Medicaid.)
I did have a weird experience where all area walk-in pharmacies suddenly refused to fill a Medicaid prescription. It had been filled for several months prior. The Medicaid negotiated price was too low and pharmacies now claim to lose $100 every 30 days. So it’s a money loser for them. It was a new brand drug with no generics or anything remotely similar. Pausing the med for a few days is a terrible idea. So I paid out of pocket to fill. Now I’m trying to get reimbursed $2000 from my Medicaid MCO! And unlike private insurance they’re much tougher to navigate. Probably going to be calling state headquarters next week.
Private insurance refuses to cover this medication at all.
My Medicaid experience has been rather bumpy. But we did get this medication started.
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Not sure what state you are in. For Medicaid in MA, if you get approved for the best kind of MassHealth, MassHealth Standard, you are very fortunate. However, MassHealth eligibility renewal is tougher these days. All my individual have permanent developmental disabilities, MassHealth still has us go through hoops to prove it.
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I’m in Maine. My son is severely disabled enough we’ve never had any problems with his qualifying for MaineCare.
I emailed the psychiatrist who’s seen him for 14 years. He replied:
<<<There’s no advantage for him in becoming “dual eligible.” In fact people with both Medicaid and Medicare often get worse service. The two systems are anti-synergistic for providers because billing hassles are doubled while reimbursement actually declines. MaineCare pays for a lot of services that Medicare doesn’t, so I would recommend just sticking with MaineCare.>>>
So I will go with his advice and decline Medicare. Thanks for all the help! Asking a provider was great advice that I never thought of.
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Closing at OP’s request as the decision has been made.