Episode 128: Medicare and Parkinson’s Disease

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller, at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

In this episode, we delve into some of the intricacies of the Medicare system, the US government's health insurance system for people 65 and older, as well as for younger people with certain medical conditions or disabilities. To say the system has a lot of moving parts is an understatement, and people who are covered by it should learn at least the basics of what Medicare provides and what it doesn't.

One of the most important periods is around the time of one's 65th birthday, when there are decisions to be made about what kind of Medicare plan to enroll in, whether to also get a supplemental or Medigap policy to cover what Medicare doesn't, and how to select a prescription drug plan. Fortunately, when facing all these decisions and trying to understand the ramifications, people can get a good handle on them using easily available resources, including the Medicare Resource Center of the AARP.

To help make sense of the various parts of Medicare, and talk about initially enrolling in the program, we have Jane Sung, senior strategic policy advisor at the AARP Public Policy Institute. What should someone with Parkinson's disease know about Medicare?

Jane Sung 2:10 Medicare is our nation's health insurance program for people ages 65 and older, as well as for millions of younger adults with a disability, and in total it's about 60 million people across the country. Younger adults under age 65 who receive Social Security Disability Income, or SSDI, generally become eligible for Medicare after a two-year or 24-month waiting period. It's important to know that people are eligible for Medicare regardless of income, so it's not a means-tested program. And Medicare is comprehensive health insurance coverage, so it covers a wide range of medical services that anybody would need, but including people with chronic conditions, like doctors' visits and specialty care, hospitalization, and skilled nursing, preventive services, and medications.

Dan Keller 3:01 What are the parts of Medicare, and what does each cover in general?

Jane Sung 3:07 This is where we get into the alphabet soup of Medicare. There are Medicare Part A, Part B, Part C, and Part D.

Medicare Part A is known as hospital insurance, and it covers hospital stays, skilled nursing facility stays, some home health care, and hospice care. Think of it as covering more acute care.

Medicare Part B is known as medical insurance, and it covers routine medical care, such as doctors' visits and specialist care, outpatient services, preventive services. It's also going to be the part of Medicare that covers durable medical equipment, DME, outpatient therapies, and outpatient mental health services.

Now, together, Part A and Part B make up what's known as original Medicare, or traditional Medicare is another way that people talk about it. Choosing Part A and B this way means that there's no private insurance company involved in original Medicare, so you can see any doctor or a healthcare provider that accepts Medicare across the country, and then your share of the costs are calculated generally the same way for everyone. For example, a doctor's visit, you're going to be responsible for 20%. The overall charge might be slightly different, but your responsibility is always going to be calculated the same way.

However, you know, people should know that original Medicare has relatively higher cost-sharing, as many people often have some form of supplemental coverage, and this could be, you know, oftentimes through a retiree health plan through their former employer, it might be through the Medicaid program if you're eligible on the basis of income, or many people often purchase a separate Medigap plan.

Now, going back to that alphabet soup, there's also an alternative way to get your Medicare coverage, and that's through Medicare Part C, otherwise known as Medicare Advantage. Now, Medicare Advantage is a choice to get those same Part A and Part B services, but through a Medicare-sponsored private insurance plan. So, with Medicare Advantage, insurance companies typically use networks of healthcare providers. Many people might be kind of familiar with how in-network and out-of-network providers work through private insurance, so you're going to need to make sure that doctors and hospitals that you're looking for are in the plan's network. People may also face insurance company rules like referrals before seeing a specialist or prior authorization rules, and there's no one standard plan, so every plan, if it's a Medicare Advantage plan, may have different cost responsibilities, like different copays and coinsurance. However, the one thing that is the same is that all Medicare Advantage plans have to cover the same services as original Medicare, so there's not a concern that something's not going to be covered at all. Your costs may be different.

The last part of that alphabet soup is going to be Part D, and that's the Medicare prescription drug coverage benefit that's known as the Medicare Part D prescription drug program.

Dan Keller 6:07 Even with original or traditional Medicare, do all physicians accept it, or do you still have to ask them whether they accept Medicare?

Jane Sung 6:18 You should always ask and make sure that they accept Medicare. I think that what we've been told, especially if you're talking about a primary care provider, is that the vast majority, something like 95-something percent of providers across the country—especially when you're talking about general doctors, less so if you get to specialists—accept Medicare generally.

Now, when you move to a Medicare Advantage plan, that's when you really have to look at those private insurance rules, whether or not somebody's in-network or out-of-network, and who those providers are in your area. Usually, those networks are typically based within a service area, too. So, you know, you want to look at the ones that are offered in where you live and think about whether or not you travel a lot during the year. So those are a few considerations that you might want to look at.

Dan Keller 7:04 There are certain concerns for people with Parkinson's disease, such as mental health care. Anxiety and depression are not uncommon. There's also typical rehabilitation services like mobility, balance, other movements, speech. Are those things all covered by Medicare?

Jane Sung 7:25 Medicare does offer mental health services, especially as part of its preventive services. It covers depression screenings, both in the initial Welcome to Medicare visit screening that they do when you first enroll in Medicare. There's an annual yearly wellness visit; it's included as part of that. And even outside of those, there's a yearly depression screening covered by a primary care provider, and those would be without cost to the beneficiary.

And then routinely, Medicare Part B covers outpatient mental health services that diagnose and treat conditions through primary providers, psychiatrists, a list of different healthcare providers. It covers psychiatric evaluation, counseling, psychotherapy, and then, importantly, as we know, prescription medications are pretty important to this, and Medicare Part D will cover prescription medicines that are pretty critical to mental health treatment as well.

But it's not to say that there are not shortcomings in Medicare's mental health coverage. Especially during the pandemic, there's been sort of increased attention to some of the shortcomings in Medicare around mental health services. There was a recent report by the Commonwealth Fund, and they highlighted a few shortcomings that they found, including there are limits in inpatient psychiatric stays for mental health, and then oftentimes Medicare Advantage plans, their networks tend to have less than robust access to providers. And we know that access to mental health providers has been a challenge generally overall, but specifically looking at Medicare Advantage plans, and then there are limits on coverage for telemental health services as well. So those are a few things that that report highlighted. So, there is still a way to go on improving the mental health coverage for Medicare, but it does have routine coverage as part of their coverage care.

You mentioned the rehab therapies, and both Medicare Advantage plans and original Medicare both do cover outpatient therapies. I know that these are really critical services for people with Parkinson's, as well as many other chronic health conditions, and they're just so critical to helping people maintain or improve their function. So they are covered. People may be sometimes familiar with therapy caps that existed for many years on Medicare services, such as physical therapy and speech-language pathology and occupational therapy. For many years, there was an annual cap, and you couldn't get services once you hit that cap. A few years ago, in 2018, happily, Congress finally took action and removed those therapy caps. So now there's still certification required that they're medically necessary, but the caps that existed for a long time are luckily no longer in place.

Dan Keller 10:05 Is there any cap on approved Medicare benefits for the things they cover? Are there any caps?

Jane Sung 10:12 There's not like an overall cap to Medicare's coverage. There's not an overall limit to its coverage, so long as the care is considered medically necessary.

There are a few types of specific services, mostly under Medicare Part A, where there are some specific limits, and then these are some of the bigger things. So, hospitalization, for example, there's a 90-day limit on its coverage for a single episode of care, so it might not be within the same calendar year, but in a single hospitalization event, there's typically a coverage up to 90 days, and then beyond that, Medicare actually offers an additional 60 days of lifetime reserve coverage beyond that, but there is effectively a limit on that type of coverage.

I mentioned earlier that there is this inpatient psychiatric hospital care limit up to a lifetime of 190 days, so there's not going to be coverage beyond that 190 days. And then similar to the hospitalization, skilled nursing facility care also has a 100-day limit per episode of care as well.

Dan Keller 11:18 Now you mentioned that Part C, the Advantage plans, are through private insurers, but so is Part D, the pharmacy plan, if I remember right. And not all of them cover everything, and people with Parkinson's are on various drugs. So, what do they have to be careful of when they select a Part D plan?

Jane Sung 11:39 You're exactly right. The Medicare Part D prescription drug plan is offered only through private insurers, and so the decision about your medical care under Medicare, whether or not you choose original Medicare or Medicare Advantage, your Part D, your drug coverage is going to be offered through private insurers.

If you choose that original Medicare route, what you would do is sign up for a separate standalone Medicare prescription drug plan, and even if your medical coverage isn't offered through private insurers, your drug coverage is going to be if you choose, because it's still voluntary, but they'll be offered through private insurers. If you choose Medicare Advantage, almost all MA plans tend to include drug coverage as part of their coverage as well.

Since it's offered through private insurance companies, just like Medicare Advantage, there are going to be differences from plan to plan, so when you pull up all your choices, you want to pay attention to all the differences. Importantly, for drug coverage, you want to make sure that the medications you need are on the plan's formulary, and that you're comfortable with the cost-sharing required by that plan. It seems like more and more plans have these features, like separate drug deductibles, or they have more complex tiers on how they cover specific drugs. So, you really want to dig into the details and make sure you're familiar with exactly how your plan is going to work.

Some people are also familiar with the concept of the Medicare prescription donut hole, which used to be when consumers hit a certain point of drug spending in the year, they would have a period where the insurance company didn't pay for anything until they came out of the other side of the hole. Luckily for people, that donut hole has now been closed for both brand-name and generic drugs, so that's a problem that luckily has been fixed.

Dan Keller 13:28 I suppose another thing people need in general if they're looking at a Part D plan is a crystal ball, because you don't know what drugs you might need in the future and whether they're going to be covered.

Jane Sung 13:41 Yeah, that's exactly right, and that the plans can change from year to year as well. A lot to keep track of.

Dan Keller 13:48 Are there any things that you can think of that people with Parkinson's might need that they should be aware of and need to budget for that Medicare doesn't cover?

Jane Sung 13:58 A really important thing to know is coverage is limited to medical care, and it doesn't cover things that are considered long-term care. This is actually a common, important source of confusion by a lot of people. So, aside from skilled nursing facility stays, it actually doesn't cover nursing home care, it doesn't cover personal care, custodial care, 24-hour at-home care, and I know that those are services that are really important to people, but they're not going to be generally covered by the Medicare program.

Medicare does offer some home health benefits, but it's pretty strictly limited for people who are homebound. It has to be recertified as medically necessary every 60 days, so there are some pretty tight restrictions around that coverage. But you should know that for people who might be eligible for both Medicare and Medicaid on the basis of income, there might be more of these sort of long-term care services that are covered by the Medicaid portion of their coverage, so that's something important to know.

I think another type of coverage that people with Parkinson's might be interested in is durable medical equipment. Again, Medicare Part B does offer that coverage, but there's going to be some limitations to what Medicare will pay for. It's going to be restricted to what's considered medically necessary, which, frankly, might not cover everything that people with functional limitations may need to be comfortable or truly functional. And so those are other costs that people may need to plan for and think about.

Dan Keller 15:26 One thing I think should be noted about Part D is there is a penalty if you don't sign up when you're first eligible, which is tacked on when you do sign up for it. I guess they want to discourage people from just signing up for Part D coverage when they need it—it's an insurance plan, everybody should be paying in and spreading the risk. So I think people need to know that they could be penalized for not signing up when they're first eligible. What is the open enrollment period, and what does it entail or provide?

Jane Sung 16:00 Open enrollment happens every fall, October 15 to December 7, and it's the time of year when people who have Medicare, especially those with a Medicare Advantage plan or a Medicare prescription drug plan, can reevaluate their coverage, shop around amongst the plans offered this year in their area, and then switch plans if they choose to do so.

A good way to do this is to go on to medicare.gov and look for the Medicare Plan Finder tool there that the Centers for Medicare & Medicaid Services makes available. If you plug in your zip code, you'll see all the Medicare Advantage and drug plans offered in your area, so you can compare their costs and coverage, and then sign up right there.

It's important to know—you talked about when people become eligible for Medicare the first time, and delaying—the open enrollment period is not the period where you first sign up for Medicare, although there's some chance that it could be if you happen to turn 65 during that window, or your 65th birthday is around that window. The enrollment period when you first sign up for Medicare typically happens around your 65th birthday, or when you first become eligible on the basis of disability, and you're exactly right. Even though it's voluntary, if you don't sign up for Medicare Part D for drug coverage when you're first eligible, you could potentially face this lifetime penalty where you pay more every year. And the same with Medicare Part B, in fact, if you don't sign up when you're first eligible, you could face penalties throughout your life, unless you fall into certain special exceptions, and the most common exception is if you're still working and you still have coverage through employment.

Dan Keller 17:30 Besides medicare.gov, are there other resources, such as senior resources in communities, or even the AARP and its website, where people can find out what the system is and be able to look at plans?

Jane Sung 17:45 We have some resources available on the AARP website, some helpful information that may be really useful for people. If you check the AARP website at aarp.org/medicare, we have information available there.

In every state across the country, there is actually a wonderful resource that's federally funded, and they offer unbiased, sort of individual assistance for people, and they're called the State Health Insurance Assistance Program—they're known as SHIPs. There's one in every state, and sometimes they're called the State Health Insurance Assistance Program, in some states they might have a different name if that state has chosen to call it something different, but you can find all of the offices through a central website, it's shiphelp.org. So, if you go to shiphelp.org and look for that SHIP office in your area, they're able to offer this sort of independent, unbiased assistance.

And then in addition to the medicare.gov Medicare Plan Finder, where you can pull up all the plans and compare all of their different features, Medicare also has a toll-free number that you can call and get your questions answered, and that's 1-800-MEDICARE.

Dan Keller 18:56 Now I assume if people go to the AARP website and look at information about supplemental plans, the things that cover the other 20%, they're going to see a lot about UnitedHealthcare. It seems AARP has some relationship with them for the supplements, but there are lots of other choices in supplements. Is that right?

Jane Sung 19:16 The information that's available on that aarp.org Medicare website that I mentioned is part of our non-profit, separate, independent entity, where we are just there to provide neutral information about Medicare's coverage, and so it doesn't have anything to do with the private side of AARP's work with other organizations in doing offerings. So that's a totally different side. I don't work on that at all, and the information that you should find on that website is all sort of neutrally based.

Dan Keller 19:44 Good. What have we missed, or what do you think is important to add, if anything?

Jane Sung 19:49 I'll highlight a couple of things. Medicare does offer comprehensive coverage, so there are costs involved, but it's obviously very complicated and complex, so we really encourage people to take the time to make sure you know how the program works, which option is best for you, and what path you'll take for the coverage you can afford.

Medicare also does not offer long-term care coverage or personal or custodial care, so that's another important type of care that people need that they'll have to look elsewhere for. Unfortunately, the Medicare program doesn't offer that.

Lastly, I would say that one thing that we didn't touch upon is for people who might be worried about affording the cost of Medicare, there are other sources of financial assistance to help with some of the costs available. Every state has a Medicare Savings Program in partnership with the state Medicaid program available to help people with the costs of Medicare based on their income level, and then the Medicare Part D prescription drug program also offers Extra Help for people who might qualify as well, and you can find information and eligibility about that type of Extra Help through the medicare.gov website as well.

Dan Keller 20:59 I guess it's worth noting also that Medicare is not necessarily free. There are premiums every month, so people should be aware that they're going to be charged for that. It'll be coming out of their Social Security, or however it's paid. I guess the last thing is, how do people sign up? Is it easy? And I think Medicare encourages people to sign up about three months before their 65th birthday, is that right?

Jane Sung 21:24 We would suggest, and I think Medicare would suggest, starting the process before your Initial Enrollment Period window opens. That Initial Enrollment Period window starts three months before your 65th birthday, the month of your birthday, and then the three months after, so that's your initial enrollment window.

Enrollment happens through the Social Security Administration. You can find access to it on that medicare.gov website, but we would definitely encourage people to start early. There's a lot to learn and a lot to consider, and big decisions to make.

Dan Keller 22:00 Am I right in thinking that in that Initial Enrollment Period, if you're going to sign up for a supplement, which is through private insurers, they cannot deny you based on medical condition, but forever after there is underwriting—they look at your medical condition?

Jane Sung 22:18 Those are the rules around Medigap, which is a separate product from Medicare, for people who choose the original Medicare route, and there's still substantial cost-sharing for people. And so one of the options that people choose is to purchase a separate Medigap plan to help them with that additional cost—that could be that 20% or those deductibles, the sort of large out-of-pocket costs that exist under original Medicare—so Medigap can add confusion to all this. It has its own set of enrollment rules.

That initial open enrollment time period for Medigap does happen when you first sign up for Medicare Part B, so typically again around when you turn 65, and you have that window of time to sign up for Medigap without any medical underwriting, and without any regard to your health status—they can't ask you any health questions. After that period of time closes, if you later decide that you want to purchase a Medigap policy, some people may have trouble getting a Medigap plan at that point. It's up to the insurance company on whether or not they are going to require a medical underwriting, whether or not they're going to offer you a plan, unless your state might have some type of extra consumer protections in place. But federally, there are not any protections outside of that initial time to buy Medigap, and that does limit people's ability.

You know, there's a lot of talk around in the promotion of Medicare about the ability to switch between original Medicare and Medicare Advantage, and technically that is true—that you can switch between the two options during the fall annual enrollment period—but that Medigap restriction serves as a limitation on your ability to switch back to original Medicare. So it's another careful thing to think about, is whether or not you want to give up your right to buy Medigap after that initial time period.

Dan Keller 24:11 It seems like people have to really delve into this when they first are going to sign up, but the only decisions from year to year would be do they want to change their plan to an Advantage or from an Advantage, or change their Medigap policy, so the paperwork seems to diminish quite a bit after that initial learning period. Well, I really thank you. You seem to be the source of all knowledge about Medicare, you Jane.

There are several resources for you to become familiar with Medicare. As Jane mentioned, you can get up to speed about signing up for Medicare, as well as keeping up on news and developments, by going to the AARP Medicare Resource Center at aarp.org/medicare. It covers many of the issues and topics that Jane discussed, and there's an 800 number where you can get answers to questions about Medicare.

Of course, the Parkinson's Foundation has plenty of information on Medicare, especially as it relates to PD. Just go to parkinson.org and search Medicare. Topics you'll find on our website include understanding the program, eligibility, coverage options, supplemental insurance, and frequently asked questions. There's also a webinar in conjunction with AARP. Just visit parkinson.org/aarp to find it.

The official government Medicare site is at medicare.gov, providing information on getting started with Medicare, finding health and drug plans, finding healthcare providers, and comparing hospitals and nursing homes. You can also do a live online chat 24 hours a day, seven days a week, or speak with a representative at 1-800-MEDICARE. There's also a tool to find phone numbers and websites for helpful organizations in each state.

Finally, Medicare puts out a handbook each year called Medicare & You. You can find it by searching medicare.gov for Medicare & You. It's fairly comprehensive with information on plans, benefits, rights, protections, providers, and a glossary of Medicare terms. It's available online or in print, with versions in large print, braille, several languages, and formats for Kindle or other electronic devices.

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts.

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening

Medicare, the U.S. government health insurance program, covers more than 63 million people, with more than 49 million people also receiving prescription drug coverage. It provides health insurance for adults over 65 as well as people with some medical conditions or disabilities. The system has many moving parts, and beneficiaries need to understand it to derive the most benefit, know what it covers and does not cover, and what costs they will be responsible for. An important time is the initial enrollment period, when people need to decide what kind of plan they want to select, either “original” Medicare through the government or a Medicare Advantage plan with a private insurer. Receiving prescription drug coverage is another decision, one that is particularly important to someone with Parkinson’s disease.

Fortunately, there are several resources to help people sort out all the options, and once enrolled, the year-to-year coverage decisions are much less burdensome. In this episode, Jane Sung, JD, a senior strategic policy advisor at the AARP Public Policy Institute, explains some of the intricacies of the Medicare system and helps to sort out the kinds of decisions people need to make about Medicare coverage.