Medicare & Parkinson’s: What You Need to Know

Adolfo Diaz 00:00:00
Welcome to the Parkinson’s Foundation and AARP joint webinar series. Today’s topic is Medicare and Parkinson’s: What You Need to Know. Hello, everyone.

My name is Adolfo Diaz, your moderator today. I’m the Associate Vice President for Information and Resources at the Parkinson’s Foundation. In that capacity, I have the pleasure of overseeing our 1-800 toll-free Helpline. For those of you who are tuning in for the very first time, we’re so glad to have you here today. This AARP and Parkinson’s Foundation partnership will help reach even more people with Parkinson’s and their care partners to provide the tools, information, resources and community they need to live better with Parkinson’s disease.

Before we get started, there are just a few little tips and tricks, webinar tools we want to share with you to make sure everybody is comfortable. The first feature we’d like to point out is the question-and-answer icon located at the bottom of your screen. This is where you can type in your questions or message us if you’re having any technical difficulties. We’ll be answering as many questions as we can toward the end of the program. If you open your chat box right now, you’ll be able to find the link to download the slides for today’s webinar. This webinar is being recorded, and it’s going to be available on demand within 48 hours.

All of those who are registered will be receiving an email link, so you don’t have to do anything. It will also be available on the Parkinson’s Foundation website at Parkinson.org/AARP2021.

Before we begin, we’d like to take a moment to get to know our participants just a little bit better. We’re going to ask you to take a moment and answer the questions below that you’ll see on your screen in the poll: What best describes your connection to Parkinson’s disease?

All right. It seems like about 60%, 62% of our audience are individuals with Parkinson’s, about 23% are care partners, and we have quite a few health professionals and some friends, as well as some other family members. Thank you for doing that.

Adolfo Diaz 00:02:16
It’s my pleasure to welcome our very first guest speaker, Tricia Sandiego. Tricia is a senior advisor for AARP’s Caregiving and Health team. Her current work focuses on strategies for educating those age 50-plus and their families on caregiving and healthcare through programs, online tools and resources. Today, Tricia is going to be speaking to us about understanding your Medicare benefits. Welcome, Tricia.

Tricia Sandiego 00:03:08
Thank you so much, Adolfo.

I’m just going to switch over to my screen and share my slides. I have to thank everyone for being here today with us. It’s my pleasure to provide information on Medicare. Medicare can be kind of tricky. It’s a bit of an alphabet soup, and understanding the basics is definitely something that can be helpful. Even if you feel like you already have a firm understanding of it, it’s always good to have a refresher. This is going to be sort of Medicare 101. We’re going to talk about understanding your benefits as a Medicare beneficiary.

The agenda today from my portion is going to talk about those basics, those sort of firm, foundational elements of Medicare that it’s important to know. Then I’m going to talk about your Medicare choices. What are your pathways to get your Medicare coverage? What are the main options that you have? Then we’ll quickly go over some resources and tools.

Going back to the basics, as I mentioned, everyone might be at different levels, but as you may or may not know, Medicare can get confusing pretty quickly, pretty easily. If this is a refresher for some of you, welcome. For some who are new to this Medicare world, take the time to really understand each of the different parts and components. If you get overwhelmed, don’t get frustrated, because know that it is easy to get overwhelmed with this topic. There is a lot of information to digest, and everyone’s situation is unique.

It’s kind of hard to tell you a one-size-fits-all rule when there is none. You really have to look at your own options and decisions that you have, what your lifestyle is like, and see how that fits in with your Medicare options.

First and foremost, what is Medicare? Medicare is a federal health insurance program for people who are mainly age 65 and older. People under age 65 with certain disabilities are also eligible, and then people who have end-stage renal disease are also covered through our Medicare federal program.

Let’s take a quick quiz. I’m just curious to see, just to kind of get a sense, and no problem if you’re purely guessing, but do you think that Medicare enrollment, enrolling into Medicare for the first time, is something that’s automatic? Is that something that you actually have to do? Or is it something where it depends? As I mentioned, everyone’s situation is unique, and so maybe that’s the option. Do you think it’s automatic, or do you think that it’s something you have to do?

Tricia Sandiego 00:05:21
Great. We have 83% of people saying no, it’s not automatic; 6% saying yes; and 11% saying it depends. The correct answer is actually it depends. Both yes and no are correct, and you’ll hear a little bit more about that later. But I’ll quickly tell you, it depends mainly on whether or not you’re collecting Social Security benefits yet. Let’s say you did early Social Security benefits, you collected those early at age 62, and when you turn 65, Medicare enrollment actually does tend to be automatic for you.

It’s good to always confirm and call, but if you already receive Social Security benefits, it’s automatic. If you have not yet received Social Security benefits and you’re approaching age 65, or if you’re continuing to work past the age of 65, you do have to manually opt in and enroll in Medicare yourself. For that, the answer would be no, it’s not automatic if that’s your situation. As you can see, it depends.

Going on to the next slide, I’m just going to give you some foundational glossary terms, which you may know already through previous health insurance coverage. You really have to get to know these terms, and these same terms apply in the Medicare world.

A monthly premium is the amount you pay to Medicare or a private insurance plan for your healthcare and your prescription drug coverage. It’s something that comes out every month that you have to pay.

A deductible is a certain threshold amount. It’s an amount that you owe for healthcare services that you have to pay before your health plan or your Medicare begins to pay, and the deductible may not apply to all services.

Coinsurance is usually a percentage. It’s the amount that you may be required to pay as your share of cost for services after you pay your deductible. This is sometimes an 80%, 20% rule, where an insurance coverage or Medicare will pay 80%, and you pay 20%. That’s the coinsurance.

A copayment is usually a set fee for certain services, for a covered health service, usually when you receive the service is when you pay. The amount can vary depending on the type of insurance that you have.

What does Medicare not cover? In general, Original Medicare, and we’ll talk about what Original Medicare means, does not cover vision, dental, hearing, things like hearing aids, nor long-term care. The fact that Medicare does not cover long-term care can actually be surprising to a lot of people.

Medicare only covers certain services if they are medically necessary, and it does not cover custodial care, which is help with ADLs, your activities of daily living, such as bathing, eating, dressing and using the toilet. That’s just something to clarify because I know it’s a point of confusion. Medicare does not cover long-term care.

The other components I have here, vision, dental, hearing, sometimes can be covered through Medicare if you have a Medicare Advantage plan, and we’ll talk about that later. But in general, if you have traditional or Original Medicare, that does not normally include vision, dental or hearing.

Tricia Sandiego 00:09:20
Now, let’s go to the different parts of Medicare. I said it’s a little bit of an alphabet soup, and you’ll see why. It’s because there are all these different parts. The main parts are A, B, C and D, and I’ll go through those. I may skip around a little bit, but it’ll just give you some basic information about each of the parts.

Part A is hospital insurance. This will cover things like inpatient hospital care, some hospice and home healthcare, and some skilled nursing care.

Part A costs are generally, there is generally no premium for Part A. Most people who qualify don’t pay a premium for Part A because you already paid that through payroll taxes while you were working if you were previously employed. If you do not have premium-free Part A, you may be able to buy it under certain conditions. Part A does have coinsurance in addition to a deductible. We talked about those terms earlier.

The deductible for this year, in 2021, and it does change year to year, is $1,484 for days 1 through 60, the first 60 days of inpatient care in a hospital. The deductible can be applied again for additional hospitalizations after 60 days.

Part B is your medical coverage. This is going to be things like your doctor visits, laboratory tests, rehabilitation services, X-rays, some mental health services, outpatient hospital services and durable medical equipment, such as wheelchairs, walkers and hospital beds, for example. Part B is going to be things like your appointments with your doctor. That’s separate from Part A, which is your hospital.

Part B costs, again, these change year to year, but the general standard monthly premium is $148.50 in 2021. These are for those enrolling in 2021. Premiums do go up for those with higher incomes. If you have income, and you’re an individual, that’s more than $88,000 this year, then your premium will go up depending on how much you earn.

Couples, those who file married joint tax returns, who earn $176,000 or more will also pay a higher premium above the standard premium, which is $148.50. There’s also an annual deductible for Part B coverage. In 2021, the cost is $203. Generally, coinsurance, that percentage of cost sharing that you pay, is roughly 20%.

I’m skipping Part C, and you’ll know why. We’ll go to that later. Part D is drug coverage. I remember D for drug coverage.

Tricia Sandiego 00:12:24
This is prescription coverage. It helps cover the cost of prescription drugs that you pick up at the pharmacy, and it’s run by Medicare-approved insurance companies. You must join a plan in order to get Part D coverage if you have Original Medicare. Medicare Part D is provided by standalone Medicare prescription plans, and sometimes they’re also covered through Medicare Advantage plans, which we’ll talk about later.

In general, if you go through Original Medicare and have Parts A and B, then you do need to select and actively enroll in a Medicare Part D plan. You have to choose which one works for you, look at the medications that you take, and before you pick a plan, I encourage you to really see if that plan covers the drugs that you’re taking.

The list of drugs that are covered is called a formulary, and when you’re looking through the different plan options for Part D, you’ll be able to look at that. Medicare.gov has a wonderful resource called the Plan Finder, and that’s where you’ll be able to do these kinds of comparisons and find out if the plan that you’re looking at can cover the drugs that you take.

I mention that because I want to caution, don’t just go by monthly premium alone when you’re selecting plans like Part D plans. Really look at your own coverage, what your own coverage needs are, look at your list of drugs that you take and make sure that they’re covered. Otherwise, in the end, if you go through the cheapest Medicare monthly premium Part D coverage and it doesn’t cover the prescription drugs that you actually take, then you may be paying more in the end. These are things to consider when you’re choosing.

Part D costs. People enrolled in Part D may pay monthly premiums, copayments and coinsurance, just like with Medicare Part B. The annual deductible can go up to $445. Similar to Part B, people with higher incomes do pay a higher Part D monthly premium.

Now we’re going to go through Medicare choices. I talked about the basics in terms of Parts A, B and D. You notice that I did skip C. That’s because when you choose your Medicare coverage for the first time, you have to choose between Original Medicare, which is Medicare Parts A, B and D separately — hospital, medical coverage and drugs — or you can go with Medicare Part C, which is its own separate path, and that’s called Medicare Advantage.

Medicare Advantage plans will also include Medicare Parts A and B coverage, and they usually also cover Part D as well. Sometimes Medicare Advantage plans even cover more things like vision, hearing and dental. There are some trade-offs between the two pathways to get your Medicare coverage.

I think of it this way. A mentor once taught me, think of an analogy of going to a restaurant.

Tricia Sandiego 00:15:17
If you go to a restaurant and let’s say it’s Restaurant Week, do you want to order from their usual regular menu and pick and choose from the wide selection? You can have your appetizer first and choose what it is, have your entree, choose your dessert, whether or not you’re going to have one, and choose your other things. You’re just ordering à la carte from your regular menu. That’s Original Medicare. You’re getting these components separately.

Let’s say it’s Restaurant Week and they have this special set menu where you can combine, and you can get your appetizer, your entree and dessert all at once under this one menu for one fixed price. You may be saving more money because of the fact that it’s the set menu and it’s a special for that week, and you may get things that you normally wouldn’t get. However, your options are limited. Sometimes there are only two choices for your entree, or there’s only one dessert available through that set menu.

That’s just one analogy that I think of when I think of my two options for choosing my Medicare coverage. Do you want to go Original Medicare, where you’re going to get Part A, B and D sort of à la carte, and you’re picking on your own? Or do you want Medicare Part C, which is Medicare Advantage? It includes all those parts and then some in some cases, and it’s usually at a lower cost sometimes, and you have this plan, but then there are some trade-offs to consider.

Original Medicare, going this à la carte route, is fee-for-service. It includes Parts A and B. A is for hospital, B is for medical coverage. You can generally go to any provider that accepts Original Medicare. If you have a doctor that you like, that you go to, and you want to stick with them, and they accept Original Medicare, you can continue to see that doctor. You also have your choice in choosing your prescription drug plan coverage.

As I mentioned, you go on a place like the Medicare.gov Plan Finder, and you can choose and select your own drugs. If you have Original Medicare and you want to get this prescription drug coverage, you choose and join this plan. As I mentioned, people with Original Medicare can go to any doctor, hospital or health provider who accepts Medicare. Generally, about 95% of physicians and healthcare providers do accept Original Medicare.

Tricia Sandiego 00:18:38
In addition to the A, B and D Original Medicare options, you can also buy what I consider a wraparound coverage called Medigap coverage. It’s also called Medicare supplemental coverage. It’s a supplemental insurance policy to help pay for the costs of healthcare that Original Medicare does not cover. It’s sold by private insurance companies. It covers those gaps for Original Medicare.

There are going to be deductibles, coinsurance and copayments. If you have Original Medicare and a Medigap plan, you cannot also have a Medicare Advantage plan. As I mentioned, it’s sort of two different pathways. If you have Medicare Advantage, you are not able to purchase a Medicare supplemental plan or Medigap plan. There are up to 10 standardized plans, so you can compare them very easily.

That was one pathway: Original Medicare with a Medigap optional supplemental insurance policy if you want to purchase that in order to help pay for the costs of Original Medicare. That’s Parts A, B and D. That will cover hospital insurance, medical insurance and drug coverage. That’s Original Medicare, and then your Medigap will cover any kind of gaps that you don’t get covered through Original Medicare.

Part C is Medicare Advantage. This is an alternative to Original Medicare. These are plans that are offered by private insurance companies. All plans include Parts A and B and, in almost all cases, Part D as well.

This may limit your ability to purchase Medigap in the future. If, in the future, you decide you don’t want to stick to Medicare Advantage and you want to go Original Medicare, sometimes having not purchased a Medigap plan the first time you enrolled can impact the cost that you pay or your ability to get a Medigap plan based on things like pre-existing conditions.

One trade-off with Medicare Advantage is that you have to live in the plan’s service area, so it’s a little bit more limiting. You may have to use providers only in the plan’s network. You may have an in-network list of providers, and those are the only ones that you can go to that are covered.

If you have a doctor that you like and they’re not a participating provider in-network for that Medicare Advantage plan that you purchased, you will have to switch your physicians and go to different doctors, which for some of you might be fine, and for others, it might not be your preference.

You may pay an additional premium on top of the standard monthly premium. That’s because Medicare Advantage offers that convenience of an all-in-one, one-stop-shop type of place.

Tricia Sandiego 00:21:38
It’s kind of like an HMO in the sense that everything is in the network, and you can get managed care all in one place. Sometimes there’s an additional premium for that convenience of everything being at one, and then they usually sometimes have those additional benefits like vision, dental, hearing and that kind of thing.

You do usually have to follow the insurance company rules. They may require you to get a referral before seeing a specialist, whereas with Original Medicare, you don’t need to do that. It’s very network-based with Medicare Advantage, and there are limitations.

Things to consider: Do you travel a lot domestically? You may not have that portability with your healthcare plan with a Medicare Advantage plan because you have to stay in your plan’s service area. That’s one thing to consider with Medicare Advantage. In addition to things like, do you want to continue to see your doctor that you already see who is not in the network? Then you may want to go the Original Medicare route.

As I mentioned, Medicare Part C includes Parts A and B. It may include Part D. It usually does. Then there are some extra benefits depending on the plan selected. In addition to things like vision, hearing and dental, there are other wellness and preventive benefits that could be part of Medicare Advantage. Some of them have things like a nutrition plan or a fitness membership plan, which are just added perks to get through Medicare Advantage Part C.

When do I enroll in Medicare? The quick quiz that we took earlier, where we talked about whether it’s automatic or not, just to reiterate, if you are receiving Social Security, you are automatically enrolled in Medicare. It’s always good to make sure that you do receive a letter from the Social Security Administration that confirms your enrollment, that says that you are going to be automatically enrolled in Medicare. It’s always good to call and follow up. But in general, no further action is really needed once you get that confirmation.

If you are not collecting Social Security benefits yet, you can enroll during what we call your initial enrollment period. The initial enrollment period is a seven-month window. It can get kind of confusing. You can actually enroll in Medicare the three months before you turn age 65, which is very beneficial because by enrolling in this earlier portion of your initial enrollment period, you avoid future gaps in coverage.

Your seven-month window includes the three months before the month of your 65th birthday, the month of your 65th birthday, and then the three months after your 65th birthday. If you were born in June, you have, let’s say, March, April and May to enroll, and then you have the month of June as well. Then you’ll have July, August and September. That’s your seven-month window to enroll in Medicare for the very first time.

Tricia Sandiego 00:24:15
Late enrollment: if you miss that window when you could have done it, and you don’t have creditable coverage, let’s say that’s through an employer, if you don’t have coverage and you don’t enroll in Medicare during the time that you have your initial enrollment period, you can incur penalties for Part B and Part D. Sometimes those penalties will stay with you throughout the whole course of your Medicare coverage. Initial enrollment timing is really critical.

There are special enrollment periods, and this is what I referenced. Let’s say if you do continue to work and you have employer-based coverage, you will not incur a penalty for not enrolling in Medicare. You’re able to delay your Medicare enrollment if you choose.

We encourage you to work with your human resources and benefits department to determine the timing of that and when you need to enroll. But there are special enrollment periods for when you do decide to retire, end the employer coverage or switch over. There is a time that’s not necessarily the seven-month window; that’s another time period for when you can transition from that employer-sponsored coverage to Medicare.

Quickly, some resources. I referenced Medicare.gov. Their website is Medicare.gov. They also have a phone number, which is 1-800-MEDICARE. Here are the digits: 800-633-4227, if you need help. Medicare.gov has tools like the Plan Finder that I mentioned, and those are really good tools to help you make comparisons between plans. You can filter and choose what kind of plans you’re looking for. Medicare.gov is a really great resource. You also want to look at your State Health Insurance Assistance Program. That’s available at SHIPTAcenter.org, and the number is 1-877-839-2675. Sometimes you may just want to talk to someone to ask your questions about Medicare as you’re either actively enrolling or, if you already are a beneficiary, how to use it and what it covers. The SHIP TA Center, the State Health Insurance Assistance Programs, does provide that credible, trustworthy, unbiased counseling.

It’s sort of this individualized, one-on-one counseling that they offer for free, and it’s a benefit that you get through the states, through your own state. You’ll have your own website and phone number to call, or they’ll direct you to one in your state. It’s a great way to get questions about your own specific individual situation. As I mentioned, everyone’s situations are unique, and what works for some people might not work for you. It’s a lot of decisions to consider, a lot of factors, and if you just want some additional assistance, you can get that through Medicare.gov, the State Health Insurance Assistance Program, and of course, AARP is here to help as well.

Tricia Sandiego 00:27:22
In conclusion, we covered some basics, which, as I mentioned, does cover a lot of the different parts of Medicare and general enrollment information, which is really critical to know. We talked about your Medicare choices, your two different pathways for how you can obtain your Medicare coverage. I will note that you are able to change your mind later. Let’s say after one year of Medicare Advantage, you decide you want to go back. You’re able to do those kinds of changes during what they call an open enrollment period.

I know later this year we’ll have another webinar to talk about that, but I did want to distinguish that the open enrollment period is for people who are already enrolled in Medicare. That’s when you make changes if you want to switch plans, if you want to switch your Part D plan, if you want to go from Original Medicare to Medicare Advantage, or vice versa. The open enrollment period, which happens in the fall, October 15 through December 7 every year, is different from those who are enrolling in Medicare for the very first time.

When you’re enrolling in Medicare for the first time, that’s your initial enrollment period, and you have that seven-month window, or you have this special window because you switch from employer coverage. That’s, in general, some information about choices. We’ve talked about some resources and tools that are helpful to you, and I know our next speaker, Lance, will provide a lot more information that will be helpful to you all. Lance?

Adolfo Diaz 00:28:57
Thank you, Tricia. That was excellent. I really, especially appreciated your analogy with Restaurant Week and explaining the difference between Medicare, standard Medicare, and Medicare Advantage plans. It’s a question we get all the time on the helpline, so thank you.

It’s my pleasure now to welcome our second guest speaker, Lance Wilson. Lance is a neuroscience medical social worker who works with individuals diagnosed with movement disorders such as Parkinson’s disease. He works at the Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorders Center in Philadelphia, a Parkinson’s Foundation Center of Excellence. Lance has worked in the medical and mental health field for over five years, providing education to people with Parkinson’s disease and their families and helping them navigate these complex healthcare systems. Welcome, Lance.

Lance Wilson 00:29:47
Thank you, Adolfo. Hi, everybody.

Thank you for joining us today. Again, my name is Lance Wilson, and I am with Jefferson Health. I am tasked with taking some of the information that Tricia provided you all a little bit earlier and nailing it down specifically with how this impacts people who are affected by Parkinson’s disease.

The one thing I do want to touch base on that Tricia went over in regard to Medicare coverage is that she was talking primarily about the people who are hitting that age of 65. I do want to differentiate that, for our individuals who have early onset or who might not be at that 65-year part of their life, there are exceptions to getting on Medicare prior to that, falling under special eligibility requirements.

As Tricia mentioned, people who are on Social Security Disability, if you are on Social Security Disability for two years, or Medicare will say 24 months, you then become eligible for applying for Medicare coverage. I just wanted to touch base on that because that is something that affects a lot of our early-onset individuals who might not be at the 65-year part of their life.

One thing I want to touch on before we dive into everything is the healthcare continuum, because at any point, every single one of us are in one of these places throughout our life. Starting with the acute hospital, of course, which is when you go to the emergency room and you have to be admitted and treated, that’s the acute hospital. We have LTACs, or long-term acute care hospitals, which are for people who still need an acute level of care, but it’s not necessary in the emergent hospital.

Of course, there are acute inpatient rehab hospitals, such as rehabs for people with amputations, strokes, traumatic brain injuries, or some type of traumatic incident that put them in the hospital and they need an intense level of rehab to recover. A lot of the one that people are typically most familiar with are subacute or skilled nursing facilities, which are facilities that are less than acute rehab.

Acute rehab is three to five hours of rehab a day, while subacute is one to three. Typically, after a complicated hospital course, or if you’re evaluated by physical therapy in the hospital, sometimes you will be asked if you want to have a short stay in a skilled nursing facility or a subacute nursing facility. Then we have the nursing home, which most people understand as long-term care, assisted living, home health, outpatient care, and independent living.

The one thing I do want to point out before I poll you is that Medicare does not cover assisted living or long-term care, as Tricia mentioned. There is something called the Medicaid waiver that is state dependent that you can apply for that can cover in-home assistance, as well as long-term care in a facility, but Medicare itself does not do that. It will pay for short-term rehab and the other things that it considers medically necessary.

Just so I have an idea of what you are most interested in, because I’ll spend a little more time with that, what do you want to hear about? I’m going to be hitting all of these topics, but I want to make sure that I spend a little more time on the things that are most important to you. We’re going to be looking at specialist care, medications, medical equipment, home health services, and mental health care. I’m curious to see what you have to say about those and which ones you would like me to go over.

Okay, so it looks like the majority of you said all of the above, so good. It makes me feel like I know what I’m talking about sometimes. It looks like 30% said all of the above, 29% are interested in home health services, 14% in specialist care, 13% in medication, 7% in medical equipment, and 6% in mental health care. It’s spread along the continuum, so that’s great. We’ll dive right in.

Lance Wilson 00:34:51
I’m going to be trying to do a lot of linkage back to Tricia’s presentation, hopefully to make everything succinct and make sense. For most people who have Parkinson’s disease, not all, they typically are seeing a movement disorder specialist, which is a subset of neurology. Medicare Part B would be the thing that would be taking care of those outpatient neurology appointments. Of course, we also mentioned Part C, which is that you are under the umbrella of that local insurance company. As long as your providers are in network with that Part C plan, that should not be an issue. From Part B, that would be what is primarily covering your specialist visits.

I do want to talk about medications because this comes up a lot in my daily life as a social worker who specializes in Parkinson’s. I want to differentiate Part C and Part B, which Tricia also already did, but of course, take a look at that bundle that Part C is because it incorporates all your care, as opposed to the fee for service. Some of the terms that we typically hear in regard to someone getting their medication covered typically lean back toward what is on the formulary.

I’m glad that Tricia mentioned those who are enrolled in Medicare. If you are interested in updating or finding a new plan, then you should absolutely go to the Medicare.gov website. It is really great, and I use it as a resource for my patients who are looking to figure out what is the best plan for them. Also take into account that formularies, which are that approved list of drugs that your insurance will cover for your Part D plan, as well as those Part C plans, can change. They are subject to change.

They can change every year. One medication that might have been covered can easily not be covered the next year. I see a lot of confusion and people who are upset about, “I’ve been on this drug for five years, and now all of a sudden I can’t get it covered.” That’s likely because the insurance company changed the formulary or the tier the medication falls on. Some terms you might hear would likely be something called a formulary exclusion. A formulary exclusion is when your plan is just not covering it at all. There is nothing that your physician can say. There is nothing that can be done. That drug is just not covered.

Then you have a formulary exception, which typically means that it’s a high-tier drug on the plan, or it’s a drug that the insurance company would not typically cover without medical rationale to cover it. Typically, that looks similar to the last thing on that list, which is a prior authorization. That is pretty much the physician’s office making a case to your insurance company as to why you need to be on said drug. Sometimes there are stipulations as to what drugs you might need to try and fail. Fail means it didn’t have any effect or it had terrible side effects. Sometimes you kind of have to go through the motions in order to get things covered as well.

There is also something called a tier reduction. For every drug, especially the specialty drugs, your drug plan will tier it. The generic things that have been out for a while, like carbidopa-levodopa, will be a lower tier. That’s something that insurance plans have no problem covering.

Once you start getting into name-brand drugs that are not generic, that is typically where they’re at a higher tier. By lowering the tier, you lower the cost and increase how much the insurance is going to pay for it. I’m sure I’ll have some more questions about that, but we’ll keep moving right along. Another thing that Tricia talked about was durable medical equipment, and this comes up a lot because I order a lot of it. We have the rolling walker, commodes, and rollators, which is a walker with a seat.

Lance Wilson 00:39:36
I’m starting to come and find out that a lot of people don’t differentiate a rolling walker and a rollator, but they are different. Of course, a manual chair and transport chair, the difference between those is one has big wheels that someone can self-propel, as opposed to a transport chair, which is all small wheels and is meant to be pushed.

Motorized wheelchairs and scooters, hospital beds, Hoyer lifts, tube feedings, and suction machines are all things that I have ordered throughout my journey as a PD-specific social worker. Not saying that all people need these things, but they are available. The things that I do want to mention and point out are shower chairs. Shower chairs are not typically covered by insurance. One of the tricks that I tell my patients is that if we can qualify you for a commode, if it is medically necessary for a commode, and for those who don’t know what a commode is, that is the bedside toilet. That’s the official name for it.

There’s something called a three-in-one commode. What a three-in-one commode is, is that it can act as a bedside toilet for you, especially for those individuals who can’t always make it to the bathroom. It’s really helpful at night because sometimes it’s riskier for one of our people with Parkinson’s to try and make it to the bathroom in the middle of the night, as opposed to just using a commode. You also have the shower chair, which of course can be used in the shower.

There is also the other use of it as a toilet seat raiser. For the individuals who might have that really low toilet that is a fall risk and could possibly injure you, we want to make sure that you have something that can help you up after you are finished using the bathroom.

There is a caveat to get a shower chair covered, but typically by itself, as an individual item, it’s not covered, and it’s something you have to pay out of pocket for. If you can’t find one, you can easily find one on the internet or you can go to your local pharmacy because they do have them in stock.

A piece of equipment that I became more familiar with as I started specializing in Parkinson’s is a lift chair. A lift chair is that mechanism that you usually have under a reclining chair that can spring you up and help you catch yourself. More and more recently, people have been requesting that I order those. The thing that I have to tell people about those is that the only thing Medicare covers in regard to a lift chair is the actual mechanism. Some people will try and get the mechanism and install it, or have it installed, in a piece of equipment they already own, or they will go ahead and just purchase a seat outright. Then what happens is you submit a claim to Medicare, or if it’s from a medical equipment store, they can help you submit the claim to Medicare to get some of that reimbursed.

The other thing I want to touch base on is the five-year rule. Medicare has this policy that if you have a piece of equipment that they’ve paid for and, let’s say, you just want another one, so let’s say you have a rolling walker and now you want a rollator. The rolling walker is not damaged beyond repair, and you got it recently, then what is going to take place is that you will likely be paying out of pocket for that equipment. The five-year rule is kind of a rule of thumb to know when you are able to purchase, or when Medicare is willing to purchase, a new thing. You can always work with a representative at a medical equipment store to help walk you through this if that is something that you’re trying to navigate as well, or you can call your friendly local neighborhood social worker. We talked about reimbursement, so we’ll move right along.

Lance Wilson 00:43:48
This is the part that usually takes up a lot of my time explaining because it is very confusing: home health services. It is something that people, especially who want to remain in their homes, will want to discuss because the facility is likely not something that most people want to follow up with. I just want to differentiate the different types of home health services. You have skilled care, which is nursing, physical therapy, occupational therapy, and speech therapy. All of those services can be billed under Medicare.

The things that are not typically covered, and there are caveats to this, but the things that are not considered skilled needs within the home care realm, are home health aides and medical social workers. I do want to differentiate the language because I do get asked oftentimes, “I need a nurse to come and help me out.” I ask, “Okay, well, what do you need the nurse for? Do you have wounds? Are you on IV antibiotics? Do you need help dealing with medication? What is this skilled need that the nurse needs to come out for?” Likely it’s not, “I need help with things like cooking, cleaning, and bathing.” Those activities of daily living, or ADLs, as you might hear them referred to, are not something that a nurse would come out to help you with. That would fall under the range of a home health aide.

The home health aides and the medical social workers, if it’s a home care agency, can come out while one of the other skilled services is actually in the home, but they typically do not stand alone for a home care referral.

The other thing I want to touch base on is that in-home services does not necessarily mean home health. To take it back to what we discussed previously in regard to fee-for-service Medicare, some people call it red, white, and blue, Original Medicare, whatever your name is for it, the one that’s broken up into A, B, and D.

Typically, in-home services can be categorized or billed under Medicare under either Part A or Part B. I know that there’s been a lot of confusion in regard to the Medicare cap on therapy because, of course, we know that our people with Parkinson’s need to maintain movement. They need to continue to exercise. They need to do their rehab and all of those things to keep them moving, to keep them healthy, because we know that exercise is important for individuals with Parkinson’s disease.

The reason that I want to touch base on the Medicare cap is, the first thing is that the therapy cap applies primarily to Original Medicare. A lot of times people will say, “The therapy cap is gone, but I can’t get any therapy.” There are still guidelines that you need to meet in order to continue therapy. It’s almost similar to providing medical necessity to Medicare as to why you need to continue therapy.

You might hear the term plateau or new baseline, and once an individual meets their baseline or they start to plateau in regard to their rehab care, their case is usually closed out. The reason that the cap is important is because the individuals who are using a home health agency, and the way to differentiate an in-home service versus a home health agency — the reason I want to make that distinction is that there are programs that will bill Part B for your Medicare and that can come into your home, but they’re not a nursing agency. They’re a rehab agency.

That is not the same thing as a home health agency, which has all of these disciplines that I had mentioned previously. The reason that’s important is because, under the way that home health is billed for skilled therapy under a home health agency, that’s billed under Part A. It’s similar to, or the same one that would pay for your hospitalizations.

The reason that the therapy cap is important is because those home health agencies can transition over to Part B while still in your home to continue your therapy. I hope that alleviates some of those questions that come up primarily around why can’t I continue therapy, or what does it mean when I’m being told that my services are being terminated? At the end of the day, you still do have to show gains.

There’s always something you can reimburse or file a claim to Medicare to see if they’re willing to cover it, but typically the issue is going to be: do you have gains realistic to obtaining your baseline?

Lance Wilson 00:49:00
I would not be a very good social worker if I did not touch base on this difficult topic. A lot of people do not like to talk about this, but I think it’s important to talk about advance care planning and what that means and what that looks like for, of course, end-of-life care. One of the worst things that can happen is when you’re put in a situation — and this is for really everybody, but primarily we’re talking about individuals with Parkinson’s who have Medicare — so I want to make a distinction between palliative and hospice. Sometimes these words are used interchangeably, but not always correctly. One of the things to understand about palliative care is that hospice is a type of palliative care, but palliative care does not necessarily mean hospice.

Palliative care is looking at making sure that you’re comfortable and maintaining quality of life, as well as things like cleaning up the med list and having someone, usually a gerontologist, who is a little more skilled with navigating care for those who are elderly. If you take a look at hospice, then we’re typically talking about end-of-life care. With that comes a few different examples of how that is covered and what that could possibly look like. If you’re talking about an inpatient unit, you’re typically talking about someone who is imminent.

They are actively dying, and it’s a facility that is typically used for making sure that their loved ones have a place for them, as well as offering a safe place for them to transition.

The one thing that comes up a lot as a medical social worker is that if someone is unable to be taken care of at home, and hospice or palliative is the option that we’re looking at, sometimes people will say, “Okay, we’ll find a long-term care facility and we’ll transition our loved one into there.” The misconception with that is that if the individual is not already a member or a long-term care individual at that facility, then Medicare will only cover the actual hospice services. They will not cover the room and board for that nursing facility, which goes back to something I think Tricia and I both pointed out: Medicare does not pay for long-term care. If you’re looking at a nursing facility or a long-term care facility, that is not a benefit that Medicare covers.

Lastly, and this is the one that most people end up dealing with, is the home with services. The one thing I do want to point out about an inpatient unit is that you have to qualify medically for it. It is not something that, unless you’re paying for it, if you don’t qualify, you likely will not be able to get into an IPU. Back to the home with services, this is what most people are doing. This is where the palliative home care or the hospice agency is coming in. They will make sure any equipment that is necessary or that is needed, they will handle that.

Lance Wilson 00:52:22
Those hospice agencies typically also will discuss or reiterate your do not resuscitate or do not intubate wishes, goals of care, do not hospitalize orders, advance directives, and powers of attorney, helping get all of that guesswork out of the way. It is really hard to be present with your loved one if something imminent is happening when you also have to navigate all of these legal and logistical issues.

And the reason that I wanted to touch base on mental health primarily is because COVID has done a number on everyone, but especially our individuals with Parkinson’s disease. I’ve been doing a lot of psychoeducation and providing information about mental health resources because it is not something I feel a lot of people widely bought into until they started seeing the effects that COVID had from isolation.

For those who know this already, great. For those who don’t, I hope this is a new lesson for you. I want to differentiate psychotherapy, or talk therapy, versus psychiatry. Psychiatry is of course a physician and is looking more at the medication side of things. Psychotherapy usually means talking to a clinical social worker or counselor. It is more of a safe space for you to discuss some of the things that might be bothering you.

Many psychotherapists can refer you to a psychiatrist if you are unsure of where to go. A question I get a lot is how to identify a provider who specializes in Parkinson’s. While some of those individuals do exist, I usually tell people to look for someone who is good with anxiety, depression, grief, and chronic illness if they cannot find someone who specializes in Parkinson’s disease.

Also, protect yourself in this realm, because I often hear, “I had to teach my therapist about the disease state and what it does.” While a therapist may not be familiar with every avenue Parkinson’s can take, it can sometimes be counterproductive if you have to explain your disease to someone who is supposed to be helping address your mental health.

And that’s all I’ve got. Thank you, guys. I hope you got something from our presentation.

Adolfo Diaz 00:55:46
Thank you, Lance. Excellent presentation.

We have lots and lots of questions, so we’ve decided to go over an extra five minutes so we can try to get through as many as possible. If we do not get to all of them, you can always contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO for help with your questions, as well as the AARP Caregiving Helpline. Right off the bat, I’d like to direct one of our first questions to Tricia.

Tricia, if you could explain once again: we’ve got several questions regarding the deductible period of the 60 days for Medicare. Does that mean that if I am hospitalized, then out of the hospital, and then 90 days later have a second hospitalization, does the clock start ticking again? Am I liable for a new deductible?

Tricia Sandiego 00:56:52
I believe so. Lance, you might know more than me, but I think it’s individual hospital stays. It’s 60 consecutive days in the hospital, and then an additional one would start again.

Lance Wilson 00:57:05
My understanding is actually the opposite issue, about staying out of the hospital for 60 days, because I typically am talking about the renewal or restart of the Medicare days. So, Tricia, I’ll be learning from you.

Adolfo Diaz 00:57:30
So that sounds like one we may need to get back to our viewers on and that requires a little more investigation. This other one might be a little easier. If someone purchased durable medical equipment, such as a transport wheelchair, privately and they kept the receipts and have a prescription, can they submit after the fact for reimbursement?

Tricia Sandiego 00:57:56
I believe so.

Lance Wilson 00:57:58
Yes. For individuals who get equipment and did not include their insurance, as long as it is something Medicare approves, they can submit a formal claim to Medicare for reimbursement.

Tricia Sandiego 00:58:13
And as long as that specific type of equipment is on the approved list and covered.

Adolfo Diaz 00:58:21
Next question. If someone is not 65 yet and they’re receiving SSDI, can they move to Medicare 24 months after they’ve become eligible for SSDI payments? Is that the trigger, and is this something they need to initiate on their own once 24 months has passed?

Lance Wilson 00:58:42
Yes. After 24 months of being on Social Security Disability, you are eligible for Medicare. As Tricia mentioned, for those already receiving benefits, you will be enrolled or kind of bumped over to Medicare after that period.

Adolfo Diaz 00:59:06
One of our other participants is asking about TriCare, which seems to be a wraparound type of coverage for our military. How does that affect your ability with Medicare? Is that considered one of the Medicare Advantage Part C plans, or does it impede accessing other benefits?

Tricia Sandiego 00:59:34
In general, I think Medicare and TriCare coordinate similar to how a primary and secondary insurance work together. Once you’re eligible for Medicare and if you have TriCare, Medicare becomes the primary payer and TriCare becomes secondary, helping pay for things the primary payer does not cover.

Adolfo Diaz 01:00:01
Lance or Tricia, getting back to mental health and your last slide there, Lance, is there a distinction in coverage between a psychiatrist, who would be a medical doctor, versus a psychotherapist who might not fall under the medical category?

Lance Wilson 01:00:27
Absolutely. Both of those services typically fall under Medicare Part B, or if you have a Part C Advantage plan, as long as that person is in your network, you likely will just have a copay. If they do not take Medicare at all, then you would likely be paying out of pocket for their services.

Adolfo Diaz 01:00:55
Once again, home care. We have several questions regarding home care. Where, if at all, does respite fall under this? Many families do not need full-time care, but sometimes they need a few hours or a bank of time. Are any respite services available under Medicare-related programs?

Lance Wilson 01:01:31
Typically respite care is something paid for out of pocket unless the individual qualifies for that state waiver through Medicaid to get someone to come to the house or cover some time in a facility. Typically, that is paid out of pocket.

Tricia Sandiego 01:02:00
I believe that’s true, and if there is coverage, it would likely come through the hospice care benefit.

Adolfo Diaz 01:02:19
Here’s another interesting one regarding therapies. If someone has hit their maximum or eligibility for therapy services and then they have an accident, break a leg, or something else occurs that warrants additional therapy, will Medicare cover that, or is it counted against the fact that they already fulfilled their maximum for the year?

Lance Wilson 01:02:53
It depends on whether they’re talking about inpatient or outpatient. If inpatient, Medicare typically gives 100 days and then once you hit that, you need to remain out of a facility for 60 days. If they’re talking about home care or outpatient, then we’re looking at a change in medical status. You can reapply for services, and they will understand your baseline is no longer where it was when they discharged you previously. A change in status is an actual rationale to get additional therapy.

Adolfo Diaz 01:03:43
It was also mentioned about waiver programs. How are those accessed, and is it correct that some states have their own waiver programs?

Lance Wilson 01:04:09
Correct. Every state has its own waiver program because it is based under the state Medicaid waiver. The first place I typically refer people is their county office on aging or aging and disability resource center. They can initiate the assessment needed to get in-home covered care, looking at assets and then doing an assessment of the individual and living environment to determine what type of services would help.

Adolfo Diaz 01:04:58
We have time for two more quick questions. Is there any coverage under any of these programs for fitness-type programs? As we know there are therapy limits, but Parkinson’s has many exercise programs such as boxing, therapeutic classes, SilverSneakers, and things of that nature. Is any of that covered?

Lance Wilson 01:05:33
My understanding is they’re not typically covered because they are seen as additional exercise programs. The therapist may teach you techniques to do outside of treatment, but boxing and cycling programs are not typically covered. I always tell people you never know—you can always submit it to Medicare and see.

Tricia Sandiego 01:06:04
If it’s for therapeutic purposes, that is different from a wellness preventive benefit, which can sometimes be covered through a Medicare Advantage or Part C plan. Some plans may cover gym memberships or certain sessions. That might be covered through Medicare Advantage, but not all plans do.

Adolfo Diaz 01:06:40
Our final question would be a good recap. Several people have asked: if I have Parkinson’s, what’s the best plan to get? We know it depends on your situation, but maybe give a quick checklist of questions people should ask themselves when evaluating which path to take.

Tricia Sandiego 01:07:17
It absolutely depends. It depends on how you like to obtain your health coverage. If you’ve always wanted more freedom in terms of networks and not requiring referrals, I would go through a PPO-type way of getting things, which is more like Original Medicare where it’s more à la carte and a large percentage of providers accept it. Sometimes that comes at a higher cost out of pocket or through your monthly premium.

If you want more convenience of a one-stop shop and you’re in an area that has Medicare Advantage, that is another factor to consider. Sometimes rural areas may not have service providers in network or may not even offer a plan in your area. Consider where you live, how you want to obtain your coverage, whether convenience matters more, or whether flexibility in choosing providers matters more.

Also think about traveling. If you are someone who wants to travel, that portability aspect is limited with Medicare Advantage. You have to stay within your plan’s service network and may not get coverage elsewhere. Don't just look at costs. You really have to do your research, and it is a lot of work. But know that you're not locked in, and it's not the end of the world if you go with a plan and decide that you don't like it. There are enrollment periods — open enrollment times — where you can make switches and changes to your coverage.

Adolfo Diaz 01:09:07
Thank you so much, Lance and Tricia, for all the information you’ve shared with us today and for your time. I want to thank everyone for viewing and participating in today’s webinar. Before we wrap up, please do not go away. There is a lot to cover in Medicare, so we have a part two to this series taking place in the fall. If you registered for this webinar, there is nothing else you need to do. You will be receiving a reminder email for the next one, which will be taking place October 21.

We also want to remind you about the additional resources available to you through the Parkinson’s Foundation. You can see everything from our national helpline to our hospitalization kit and publications. Reach out and we will try to answer your questions and supply the information to make the best choices possible. Also, our partner in this webinar series, AARP—do not forget about their AARP.org/Medicare website, which has a ton of information and many of these questions answered for you.

Last but not least, we ask you to stay one more minute as we deploy our survey as soon as we close the webinar. An online survey is going to pop up on your screen. Your feedback is very important to us as it helps us improve future webinars for Parkinson’s care in the community, and we welcome suggestions for future topics.

Once again, this webinar has been recorded and will be available for on-demand viewing within 48 hours. You’ll be notified via email as soon as it is up for viewing. Thank you once again for being with us today. We look forward to connecting with you again in the fall.

Take care, everyone.

Tricia Sandiego is the Senior Advisor for AARP’s Caregiving & Health team and a Certified Health Education Specialist (CHES) experienced in health communication and promotion and public health research and practice. Her current work focuses on strategy for educating the 50+ and their families on caregiving and healthcare through programs, online tools and resources. She serves as a spokesperson on caregiving topics for multicultural Asian American Pacific Islander outreach and live events like webinars and teletown halls. Tricia leads caregiving employer outreach work for AARP, equipping employers with practical tips, guidance, and free resources on how to offer supports for working family caregivers.

Prior to joining AARP, she held positions working at the National Cancer Institute and on Federal contracts for the U.S. Department of Health and Human Services and the National Institutes of Health. She has a background in health disparities and behavioral health. She holds an MHS in public health from Johns Hopkins University, a BA and post-graduate certificate in Healthcare Management from McGill University, and is PMP certified by the Project Management Institute.

Lance M. Wilson is a Neuroscience Medical Social Worker who works with patients diagnosed with movement disorders, such as Parkinson’s disease. He provides education to people with PD and helps them navigate the healthcare system. Lance has the skill set to assess and facilitate interventions, make referrals to community/national resources, and conduct brief therapy while offering support and guidance throughout the course of the disease.

Lance has professionally worked in the medical, mental health, and public health field for over five years and is often asked to speak on a variety of topics in both academia and the community.

Lance is a Licensed Social Worker (LSW) in the State of Pennsylvania, having attended Lincoln University of PA and Bryn Mawr College’s Graduate School of Social Work and Social Research. He holds C-SWHC (Certified Social Worker in Health Care) and ASW-G (Advanced Social Worker in Gerontology) certifications from the National Association of Social Workers. Currently, Lance is pursuing his PhD in Social Work from Widener University’s College of Health & Human Services as well as working on completing supervision to obtain his clinical social work licensure.

Adolfo Diaz is the Associate Vice President of Information & Resources at the Parkinson's Foundation. Adolfo developed, launched and oversees the Foundation’s Helpline, a virtual contact center handling approximately 20,000 cases a year. The Helpline provides people living with Parkinson's disease with accurate and up-to-date information, resources, and referrals to care and support services in their community. Additionally, he is responsible for the ongoing development and the production of conferences and webcasts, operational components of the Aware in Care Hospitalization program, publications, Centers of Excellence, Chapters, Young Onset and many other Foundation initiatives.

Prior to joining the Parkinson’s Foundation and providing physical therapy, his professional in both the clinic and hospital setting includes the sales and marketing of advanced wound care dressings and ostomy supplies, implants for reconstructive and traumatic orthopedic surgery, and diagnostic devices used in gynecology. Adolfo has degrees in Business Administration and in Physical Therapy, and has treated children, young adults and elderly patients in both the hospital and home settings, including several patients with Parkinson’s disease.